The Bright Side of Crohn's

Time For A Hiatus

2012-01-30T14:57:00.001-05:00

With my due date only 2 weeks away, I am now on maternity leave and awaiting the big event. I've been slowing down my work load and banking up lots of rest and quality relaxation time. Feeling great and having reached the official 'full term' mark is a big relief. Luckily I haven't had any Crohn's related pregnancy complications other than a bit of tugging and slight pain with the scar tissue in my abdomen.

So, taking it easy and pending motherhood means that I will be taking a brief hiatus from regular posting here on the Bright Side blog. So, good luck to everyone - but stay subscribed, as I will return when things calm down and I get back into the adult world!

Sincerely,

Bright Side

IBD Trigger Food Survey Results

2012-01-06T07:37:00.000-05:00

In a previous post I asked visitors to fill out a survey about their experiences with trigger foods related to their Inflammatory Bowel Disease (http://www.surveymonkey.com/s/7HDTNFK). I set this up mostly for my own curiosity and to encourage people to keep an eye on the effect that food can have on their disease.

The interesting results I've observed are some things such as, most resondents are in their twenties or thirties. The most common trigger foods are greasy or deep friend foods, and alcohol. All respondents have made at least some attempt to avoid their trigger foods, and almost half have had to bring their own meal to an event. On the positive side, the majority of respondents who have tried to avoid trigger foods, have noticed a positive result from doing so.

Here are the results so far (Updated Jan 30, 2012):

1. Disease Diagnosis:

Crohn's Disease	79%
Ulcerative Colitis	7%
Undetermined Inflammatory Bowel Disease	14%

2. Gender:

Female	79%
Male	21%

3. Age:

16 and younger	7%
17-22	7%
23-30	43%
31-40	29%
41-50	7%
51-65	7%
66-80	0%
80 +	0%

4. Which methods have you used to identify your trigger foods? (multi-response)

Sometimes noticing what happens after I eat something.	86%
A food or symptom journal.	36%
Eliminate a food then test re-introducing it.	43%
Medical testing for food intolerance or allergies.	21%
I have not tried to identify any trigger foods.	14%
Other	0%

5. Indicate the types of foods which tend to cause problems for you. (multi-response)

Spicy food.	57%
High fiber foods.	43%
Dairy foods (milk, cheese, etc).	50%
Deep fried or greasy foods.	71%
Eggs.	7%
Acidic foods like juice, tomatoes or vinegar.	50%
Caffeinated foods and beverages.	50%
Alcohol.	64%
Red meat.	21%
High sugar foods.	29%
Foods with a lot of preservatives.	43%
Other	Salty Foods. Processed Corn. Wild Rice. Waxy coatings. Gluten.

6. Have you actively tried to avoid your trigger foods?

Yes, I have kept to a strict diet.	43%
I have made some attempt to avoid trigger foods.	57%
I rarely or never avoid my trigger foods.	0%

7. Have you ever had to bring your own meal to an event or location so that you would have food to eat which would not trigger your symptoms?

Yes.	43%
No.	57%

8. If you have tried to avoid your trigger foods, have you noticed any benefits from doing so?

Yes.	79%
No.	7%
Not applicable.	14%

Total: 14 responses.

The Thing About Trigger Foods

2011-11-11T07:00:00.000-05:00

I have frequently advocated the value and benefit of keeping a symptom journal to help identify your personal set of trigger foods. These are specific foods or types of foods which cause your IBD symptoms to worsen. During the height of my flare up, I could not eat any spicy, acidic, dairy, fried, gassy, fibrous or caffeinated foods. The list of things I couldn't eat was longer than than the list of things I could eat. It was very difficult. Now, while I am in remission I can eat most things other than very spicy foods or much dairy.

Your list of trigger foods will be very personal to you and your form of the disease. No one can tell you which foods will cause you problems, you have to test it out yourself.

I have spoken often to other IBD sufferers and read many of their stories. I've also received several comments on this blog about food. Over time I've realized that many people have no idea what their trigger foods are. Worse, even more people know what they are, but continue eating them anyway. I find this very surprising and a bit sad.

I personally feel that most doctors and patients don't realize what a drastic impact trigger foods have on IBD and the quality of life for those who suffer with it. While a special diet will not cure your disease, it can greatly help with your quality of life. Avoiding your trigger foods can reduce your trips to the bathroom, ease your fatigue caused by frequent bouts of diarrhea, reduce gas and abdominal pain, and possibly reduce the irritation to your digestive tract. With all these benefits, why keep eating them?

Removing trigger foods from your diet requires extra work. I ended up having to cook a lot of things from scratch in order to avoid the ingredients in many store-bought packaged foods. I also had to pay extra attention to ways of getting the nutrients I might be missing due to a restricted diet. I took a multi-vitamin and consulted with my doctor about what I was doing. It was also recommended to talk to a registered dietitian about helping me to build nutritious meals around my restrictions.

I strongly believe that my strict attention to what I ate, allowed me to continue to live an uninterrupted life even while suffering undiagnosed with Crohn's Disease for 10 years. I did have frequent struggles with multiple daily washroom visits, but it never became an overwhelming number of washrooms visits and didn't interfere with my career or life very much. Sadly I wish I had been diagnosed sooner, because my digestive tract was being damaged over those years because I was not being treated, resulting in needing surgery. However, combining active treatment for your disease plus a careful diet is probably better than treatment alone.

So, next time you reach for a piece of pizza or cup of strong coffee... consider whether the short term benefit of it will be outweighed by the symptoms you'll get. Consider if there is something you can eat instead. What about some decaf tea, or baked chicken casserole? I see you're still reaching for that spicy taco... don't say I didn't warn you!

Take the IBD Trigger Foods Survey: http://www.surveymonkey.com/s/7HDTNFK so we can see what other people with IBD have learned about their trigger foods. Thank you!

Small Bowel Resection - 1.5 Years Later

2011-09-10T18:05:00.001-04:00

A year and a half ago I had about 30cm of my terminal ileum (small intestine near where it attaches to your colon) removed due to severe inflammation and damage from my Crohn's disease. This section was causing me pain, chronic diarrhea and had started developing fistulas. After discussions with doctors and weighing the options I decided on surgery rather than stronger drugs, because I wanted to be drug free and feeling well when I started a family.

Well here I am a year and a half later. I feel wonderful, energy level is up and I can eat almost anything except dairy and very spicy foods. I'm currently on no medications. I consider the surgery to have been a success and I'm happy with my decision.

I am left with a "C" shaped scar hugging around my belly button and two other tiny ones due to the insertion of the cameras - the surgery was done laproscopically. I also have a separate scar where an abscess was repaired. These have healed well and while my stomach will never look as nice as it once did, I consider my scars to be badges of honour, reminding me of what I've been through and how lucky I am. I'm not ashamed of them at all.

I don't experience any daily pain related to my Crohn's. I sometimes have little twinges that spark old worries but that's usually when I've been eating a ton of high-fiber foods (or beef). I seem to be extra sensitive to the goings on in my abdomen - though I think all of us with IBD are much more aware of what's happening in that zone. With my current pregnancy things are stretching and shifting causing all kinds of new sensations so it is now hard to tell if a twinge of pain is from Crohn's or the growing baby and the muscles surrounding it. I'm leaning toward the latter since it occurs on both sides.

I'm happy with my decision because in the last 18 months I've done so much without needing drugs - went on a cruise, got engaged, bought a house, got married, and became pregnant. whew! This would have been a much less fun journey if I was still in pain or on a restricted diet. I have also left the infusion type drugs as an ace in my back pocket if my IBD comes back. My doctor and I are now aware of what's going on (instead of shrugging it off as IBS) and I can get right in for the appropriate tests if I notice any new diarrhea, pain, or other symptoms I know so well. My hope is that if and when another flare-up arrives I will be able to catch it before it does as much damage as the last one did.

It's not recommended to take drugs like Remicade while pregnant, and if you stop taking it you can develop an immunity to it. So I'm glad I chose surgery and saved this option for the future, ideally after I am done having children. Hopefully I'll never need it, but the option is still there.

The experience of the surgery and recovery was intense and sometimes difficult. There was also no guarantee that the inflammation would not return immediately after surgery in the same location. However my last colonoscopy showed everything looking pretty good so I am going to live life to the fullest, eat healthy foods and stay positive.

If you are considering surgery for your IBD, talk to your doctor and to a surgeon before making the decision.

Crohn's Disease and Considering Pregnancy

2011-08-28T09:37:00.004-04:00

The decision to have a child is a big one, huge actually, and when you have a chronic illness such as Inflammatory Bowel Disease your decision can be clouded with extra uncertainty. Here I present some advice and tips to help get you thinking.

When I mentioned wanting to be sure "everything was ok" before trying to get pregnant, both my family and my doctor thought I was being too worried and their advice was that "when you and your husband feel ready, then you're ready." That caps off everything I'm going to say today and is the most important advice. Only you can decide when you're ready so follow your heart, talk it over together and make sure the decision is right for you.

If you're like me however, you might smile at the touchy-feely advice and then look for something a bit more helpful. I'm laughing as I type this but, yes indeed I'm geeky enough to want to put some logic to such an emotional decision. Here are some tips and suggestions you might consider.

- Try to wait until you are in a remission period. If your Crohn's Disease is newly diagnosed or tends to come and go periodically, it might be a good idea to see if your doctor can help you achieve remission before you start trying for a baby. Don't wait forever though, if you are still in a flare up but your doctor advises you are safe, then go for it.

- Women who are in a flare up before getting pregnant tend to stay in a flare up or get worse during pregnancy. Women who are in remission tend to stay that way during pregnancy. Many women report feeling their best ever during their pregnancy. Either way there are always exceptions.

- Try to achieve a healthy weight before conceiving. If you are underweight due to a recent flare up, try to gain back up to your ideal weight. Being over or underweight can adversely affect your fertility. Being underweight often goes with malnourishment which can affect your baby.

- Quit smoking as soon before becoming pregnant as possible to ensure those urges are well behind you. Quit drinking shortly before you start trying to ensure you don't inadvertently drink while pregnant.

- Ask your doctor if any medications you are taking are safe for pregnant women. If not, see if your doctor can put you on an alternative therapy or pause a drug during your pregnancy.

- Begin taking pre-natal vitamins with Folic Acid at least one month before you start trying. Dispose of any old or unused medications at the pharmacy because these can be dangerous for you and for children.

- A bad flare up can result in malnourishment. Start eating a well rounded nutritious diet of healthy foods. Consider asking your doctor to do a blood test to ensure you are not low on any nutrients. A dietitian can help you work out a menu that will be nutritious and won't trigger your symptoms (as much).

- Ensure that you are fully healed from any recent surgeries and that you get the all-clear from your doctor or surgeon.

- If you've had abdominal surgery or a large number of x-rays, ask your doctor for advice on whether you should be concerned with that. Ask your doctor if he or she recommends an Ob-Gyn who is familiar with the added risks that IBD can involve.

- Get some exercise. A flare up can cause you to limit your physical activity. Now is the time to get back into it and improve your over-all health.

- Clean out your life. Get rid of junk, simplify the demands on your time, and streamline everything you can. The less stress and strain on you the better you will do during your pregnancy.

- And finally, the best advice is that no one can tell you when the time is right. You and your partner need to make this decision together. Don't let hurdles or fears get in your way of trying to have a family if that is what you want for your life.

Good luck!

Web MD Article on Crohn's Disease and Pregnancy

Life Is Beautiful

2011-08-23T14:13:00.004-04:00

There are some moments which stand out as particularly wonderful, like when your Gastroenterologist releases you as a patient back to your family doctor because you're doing so well (happened yesterday).

And then there are moments which make the sun moon and stars look dull and uninteresting in comparison. Such as... when you and your husband both look at the ultrasound monitor and see your baby for the first time. Yes, I'm excited to announce that I'm 3 and a half months pregnant!! I was going to wait longer to post the news here, but I've been repeatedly moved by my fellow blogger Kathryn's inspiring and beautiful posts on her journey. I also figured it would be valuable to write future posts covering Crohn's Disease and pregnancy. Everything has gone smoothly so far so I'm losing some of my what-if-something-goes-wrong fears. Some. So I just can't hold it in any longer!

I'm feeling very good so far and everything up till now has checked out. I am not on any medications other than vitamins and already my belly has out grown almost all of my pants. I'm currently in dress-pants for work which have the button held closed with a hair elastic because I can no longer do them up! Apparently when you have been the same size for 15 years... you don't have much flex in your wardrobe. I might have to switch to maternity pants by month 4! *laughs*

So, that's my news... more personal stories and informative posts to come.

People Are Disgusting

2011-07-25T07:04:00.002-04:00

I recently arrived home from a week long vacation to Florida. We had a lovely time in Disney World (it was our Honeymoon) and we visited several parks, saw some great shows and ate at some fantastic restaurants. We had a blast. The trip gave me the opportunity to visit more public washrooms within a 7 day stretch than ever before. My long planned rant on the failure of public washroom design will be a forthcoming post, but today I've decided I just can't keep silent about the horrific habits of people.

Disney does its best to keep its facilities clean. I often saw employees cleaning, sweeping and checking on restrooms and some of them it seemed had a permanently stationed employee cleaning all day long. It's still not enough to keep up with the pigs out there, and they must - I've determined - exist in frightening numbers.

Un-flushed bowls, sprayed seats, garbage on the floor and pure filth were some of the treats I experienced. It's not just at Disney, it's everywhere I go, but this week I experienced so much of it that I've pretty much snapped. I estimate that when I use a public restroom, there is a 70% chance that I will have to wipe off the seat as the first action when I arrive in the stall. Who are these women who do not look back after 'hovering' to see if they've left a mess for the next person?? I'm utterly shocked that I am in the minority that I always make sure to leave the stall tidy for the next person. Manners and hygiene are qualities of LESS than half of us!? Insane. I wonder if this happens in the mens' washrooms too?

I really think that if you belong to this group of people you should be ashamed. Thank you for leaving your mess behind for me to clean up. Would you do this in your own home? Just because a restroom is public, it's not a license to turn your brain off and act like a pig. My work place struggles with this problem as well. Countless memos have been circulated and notes posted in the women's washrooms pleading for considerate behaviour and yet I have a number of co-workers who intentionally clog the toilets, fail to flush, drop entire rolls of toilet paper on the ground and generally make a mess. If you hate your job so much, please just quit. Sometimes I dream about identifying these people by their shoes and coming to the defence of my employer- I work for a company which treats their employees well, is flexible, offers benefits and throws staff lunches and events for fun. The disrespect shown is baffling.

Sadly I know this won't change, but I had to vent. It is frustrating for the rest of us, especially when you suffer from a condition like IBD where sometimes in an emergency the extra time to clean up after others can feel like an eternity. It's such a shame.

While on the topic of washrooms and people, can someone explain to me the purpose of a washroom valet. An employee stationed in the restroom who hands you towels or little perfumes then expects a tip. To me it just feels like an intrusive witness to my private restroom activities. Nor will I ever dig out money while in a washroom just because you happen to stick an employee there. It also seems like a terrible job. Free these people- it's time to do away with the antiquated tradition.

The Truth About Soy

2011-05-29T12:10:00.001-04:00

I pride myself on being somewhat of a scientific thinker. I try not to jump to conclusions or believe every little thing I hear. However, even I have started to fall for the persistent rumors about the 'dangers' of eating soy. Well, little did I know... there is absolutely no scientific proof about the so-called risks of eating soy. No peer reviewed studies. No body of factual evidence. Just rumors started by an organization which just happens to have many members who are meat and dairy farmers. Hmm.

Read this article about the issue here: http://zenhabits.net/soy/ which has a lot of links to further info and studies and decide for yourself. But as far as I'm concerned, Soy is perfectly safe.

This is important for people who are on restricted diets, because soy is often a good tasting replacement for many problem foods.

Crohn's Disease Tips For People In Remission

2011-05-03T20:08:00.001-04:00

There are many articles and strategies geared toward achieving remission when you are in a flare-up, however there is not much information to be found on what we should do when we are currently in remission. How do we take care of ourselves aiming to maximize the length and quality of our remission period, and how to make the most of it. I've been doing some research into this topic and here is my list of suggested tips and strategies.

The number one suggestion is and should always be to talk to your doctor and find out what he or she suggests. Are there maintenance medications you should take? Vitamins you should be taking to augment absorption problems? Ask a professional first and foremost.

Avoid alcohol and tobacco. These substances irritate the intestinal lining and can degrade your overall health.

Try to attain a healthy body weight. If you are thin, it might help to have a few extra 'insurance' pounds. If you're overweight, try to focus on a healthier lifestyle to help your physical and emotional health.

Eat healthy, fresh, and nutritious foods. Remember that restricted diet you were on for so long? You missed out on so much. Go for the nutritious foods and a few of the treats you missed out on. Pack on the vitamins and minerals you may have been lacking. Your doctor may advise the value of taking probiotics as a supplement. You'll feel better and your immune system will thank you.

Tackle large or important projects or goals. Remember all the things you wanted to do when you were in a flare-up and unable to contemplate getting off the couch? Now that you feel well it is too easy to push things that you recognized as important onto the 'later' pile. Don't! Grab those projects and goals and throw yourself into them. Create! You'll regret it if you don't. It will also give you a needed sense of well-being and accomplishment to achieve your goals; even if it's as simple as putting up that bird house that's been in the garage for a year.

Detoxify your life. We don't know the cause of Crohn's Disease or Ulcerative colitis, but the medical community is starting to suspect genetics combined with environmental factors. We can control our environment so it can't hurt to give that some attention. Try to incorporate more wholesome, fresh, organic foods, and natural cleaning products and cosmetics.

Simplify your schedule and your relationships. You don't have to say yes to everything, and due to the cyclical nature of IBD, you need to streamline your life to get rid of any un-needed or un-wanted obligations, tasks, meetings, etc. Do you have friends or family members who are always negative and toxic? Reduce your time spent with them and focus on the people who enrich your life and create happiness around them.

Minimize your stuff. Extra belongings and junk can clutter up our homes and offices and create a burden on us for cleaning, organizing and just living. Begin a thorough sifting of your belongings and get rid of things that you don't need. If your IBD flares up again it can be a blessing to have fewer things to clean and think about. In the future when we pass, it will be a blessing to our families if they don't have to process room upon room of cutter. Simple surroundings help us have time, energy and focus for what's important.

Get some exercise. While there may not be a link between IBD and lack of exercise, exercise does contribute to your overall health. Months or years of being inactive can take a drastic and hidden toll on your body. Now that you are physically feeling well, treat yourself to some movement! Run, dance, kick-box, take the stairs, hike, play a sport, wrestle the kids, walk the dog, anything at all is better than nothing.

Create awareness of IBD. Consider volunteering or donating to support IBD awareness and the search for a cure.

Remember that you're in remission. Let that thought remind you to appreciate this blessing. Squeeze the most out of every moment in life, and don't sweat the small stuff. Make the most of your current situation. Live fully and with enthusiasm.

Starting A New Married Life

2011-03-30T07:30:00.001-04:00

Last Saturday something awesome happened. I got married! We had a beautiful day full of love and friendship, and I married the man of my dreams. DH is fun, handsome, smart, creative and amazingly supportive. He stood by me during my bad flare up that happened last year and was by my side through surgery and hospitalization. He takes some of the stress out of having Crohn's Disease by joking about it with me and making up teasing puns based on digestive terms. Having the right person in your life can make all the difference.

My life is slowly evolving and I am trying to move from a goal and to-do list obsessed busy person, toward pursuing a life style and outlook that is healthier and happier. I am kicking off a long term adventure of learning how to garden, since our new house has a lot of gardens and lawn, and I love working outside. I am also moving a little bit (baby steps) toward Minimalism and trying to simplify my possessions, obligations and tasks.

Hopefully children are in my future and we are looking forward to experiencing our house when the weather warms up - opening the windows and enjoying our sun-room and pool. Now if only the weather would co-operate. It's at the freezing mark today.

On the IBD front, I have an appointment next week with my GI to get the results of my colonoscopy. I've been having some pains so I am looking forward to getting some answers.

Simplification Changes Everything

2011-02-24T07:08:00.000-05:00

I received a comment from a new reader and as I sometimes do I followed her profile to her own blog. There I read a familiar story. Someone struggling to take care of kids, family, social obligations, a relationship, pets, errands, chores and more, all while dealing with the pain and fatigue of Crohn's Disease.

As I wrestle with the emotions brought on by my own resurgence of faint Crohns-y pains (it's been one year since my surgery and I had a follow up colonoscopy last week; I should get results in a few weeks) and remember how drained I felt during my flare up a year ago, I ask myself what the solution is to lives that need us to be active and busy, but bodies that need extra rest and care. I've struggled with this question for a while.

I haven't found The Solution, but I have found a solution. Taking the first steps on this path has already started changing my life.

I don't normally endorse products, services or programs on this blog, so when I do, I take it seriously. Today, I am talking about a book, even better, a free book, a blog by the author and a philosophy about a way of life.

I started by stumbling upon this blog: http://mnmlist.com which contains posts about Minimalism. I then found the author - Leo Babauta's other blog: http://zenhabits.net/ and then his book: Focus, which you can read and download for free without restrictions here: http://focusmanifesto.com/.

I have read the whole book and am making my way through his blog posts. The man has a point. A good one.

While I'm not saying we should all get rid of all of our belongings and live in empty rooms, I am saying that we pile way too much 'stuff' onto ourselves. Too many junk belongings, too many obligations, too much work, too much TV, too much stuff on our plates. What happened to saying 'no'? What happened to actual living?

What if you didn't have so much junk to clean and organize? What if you didn't have obligations every evening? What if you said 'no' to working on the weekend? One step at a time.

I've started on this path already. I am gathering bags of belongings to donate or sell. I'm starting by setting the bar very low. If something has not been touched, used, or looked at in over a year AND if it does not evoke any memories or actual emotional connections then I want to get rid of it. This is very hard but I'm starting with one step at a time. I'm also simplifying my projects and learning to say no to things I know I won't enjoy. It's a process but it's making a difference.

What if you had less to worry about, less to do, less debt, and less to clean? What would you do instead? Have fun? Rest? Spend time with family? More is crushing us, less is better. Simple is good.

Washroom Access Laws and Resources

2011-02-07T20:18:00.001-05:00

When 1,400 people were asked to answer the CCFC's bathroom access survey, the results revealed that about three-quarters of IBD sufferers avoid leaving their homes during a flare up due to unpredictable access to washroom facilities. (Source: CCFC.ca) These numbers throw a spotlight on the number of lives being restricted or limited due to something which seems so fixable - washroom access.

In both Canada and the USA this issue is being addressed and people are finding solutions. The CCFC has released a new web and mobile phone application called Can't Wait (http://www.cantwait.ca/) which helps people to find and report on public washroom available across Canada. In Washington, bill HB1138 has passed which mandates that businesses provide emergency washroom access to people with bowel disorders. That's a start!

While I have never been denied washroom access when I needed it, I've also never had to explain my condition or state that it's "an emergency" in order to get access to a washroom that's not otherwise available to the public. I'm not sure if I could really get past the shyness enough to do so. Could you? I find it alarming that people are staying home and missing out on life due to fears around washroom access. Let's encourage each other to get out there, be brave, and insist on using the washroom if necessary. After all, in many places the law is on our side, and in others, society is moving in that direction.

A New Year, A New Life

2011-01-04T17:42:00.000-05:00

I say farewell to 2010 with some mixed emotions. I'm saying goodbye to a huge flare-up, major surgery, pain and sadness. However, I'm also saying goodbye to the year that saw me go on a cruise, get engaged and buy my (our) first house. 2010 was very transformative for me.

2011 promises to be a big one. My wedding shower is this month, and the wedding is in the spring. We're also taking a small trip to New York with my soon to be husband's job, and then a honeymoon possibly to France in the summer. Whew! I'm excited and impatient, and stressed! I can't help praying that my remission remains long enough for us to do all these things unencumbered. I can’t believe how much work goes into planning a wedding. It’s insane. It will almost be a relief to have it all done. I don’t want to wish away a time in my life that will only happen once, so I’m trying to relax and take it all in.

I will be planning to have another Crohn’s / IBD online chat soon. Let me know if you are interested and I’ll add you to my list of people who get emailed about them.

It’s been a while since I’ve made an actual informative post about Crohn’s Disease, so I’ll be working on that next.

Happy New Year to All!

Good Luck in 2011!

CCFA Adds Community Section to Website

2010-11-15T17:05:00.002-05:00

The Crohn's and Colitis Foundation of America has added a new Community section to their website. A rep from the CCFA contacted me through this blog to tell me about it. Obviously in hopes that I would mention it. Well, I do get contacted once in a while about things like this, but I refuse to mention something on this blog unless I've reviewed it myself and think it's valuable and free of "agenda". In this case it's coming from the official CCF foundation, so I took a look and it does have some useful features such as a forum and personal stories of people with IBD. The information resources aren't much more expansive than what you'd usually find online but it's well organized and from an authoritative source. You'll find the website here: http://www.ccfacommunity.org.

Sadly, I find that at least with the CCFC here in Canada, they are very focused on research and not so much on support. So anything that adds a support element to these foundations on either side of the border is great in my book.

Don't Lose Sight

2010-10-27T18:01:00.004-04:00

When I think about it, just 8 months ago I was fresh out of my surgery and not doing so great. Both in the physical sense with my massive Crohn's flare-up, but also emotionally. I was approaching 30 and wondering where my life was going. In just those few 8 months I did turn 30 (horror), but I also went on a cruise, got engaged and bought a house. My life is now radically different than it was such a short time ago. I'm busy with all sorts of plans and running myself almost ragged with everything going on and everything to be done.

But what's it all for? Who am I?

Life can sometimes be a bit like a powerful train. It gets set on a certain track and just gains more an more momentum in that direction. Sometimes we're so busy shovelling coal into the furnace that we forget to climb up on top and watch the mountains go by and feel the wind in our hair. And ask ourselves if this is even the track we want to be on.

It's the journey, not the destination.

A trite statement for sure, but one that is jam packed with real wisdom. Where are you heading so furiously? What's all your busy-ness accomplishing? What is going on in your life and what do you want? What's important and meaningful to you?

The other day I was sitting down to a plate full of watermelon. I was relishing the slurpy feast of fresh natural goodness. I was even exaggerating my munching sounds just for the fun of it. I realized that the restricted diet I was on for almost 10 years left me utterly lacking fresh foods. I also realized that I love fresh foods like fruit and vegetables way more than I thought I did. I almost don't know where to start to incorporate them into my diet more (Maybe I'll start by trying one of Kathryn's Recipes). It's an aspect of who I am that I'm just discovering.

I'm realizing that I have to put down the endless To-Do lists more often and just breathe. Just be myself. Just discover myself. Who is this new person who owns a home and is getting married? Who will she be? What are my new priorities and what are the new areas of my life that I want to focus on? Let the journey begin.

Update Nov 11:

I just started reading this free ebook called "Focus". It's quite eye-opening. Check it out here: http://focusmanifesto.com/.

CCFA - WebCast Update on Crohn's Treatments

2010-09-19T18:24:00.002-04:00

On Wednesday, October 6 at 1 pm EST the Crohn's & Colitis Foundation of America will host an educational program on emerging advances in Crohn's disease treatments for patients, family members and caregivers living with Crohn's disease, a chronic and often debilitating digestive disease affecting over 700,000 Americans. This interactive webcast/ teleconference, Progress in CD: An Update On the Advances In Crohn's Disease, which is supported by an educational grant from Centocor Ortho Biotech Inc, is now open for registration at www.ccfa.org/webcasts/CrohnsUpdate.

The program will be led by Dr. Jonathan Braun, M.D., Ph.D., Professor of Pathology and Laboratory Medicine, and Molecular and Medical Pharmacology, at the David Geffen School of Medicine at UCLA. He will discuss the emerging advances and progress in treating and understanding Crohn's disease and answer audience questions during an interactive question-and-answer session.

"New discoveries and therapies for Crohn's disease are emerging and through the Crohn's disease update event on October 6, patients nationwide can tune in and hear more about recent discoveries and the latest treatments," explains Dr. Braun. "I highly encourage all Crohn's patients and their caregivers nationwide to take advantage of this opportunity and tune in to the event."

This educational event is available at no cost to participants. It will answer important questions about Crohn's disease, including:
• What are the current and emerging therapies for Crohn's disease?
• How is research targeting and utilizing genetics?
• What is new in pediatric research?

Source: http://www.ccfa.org/about/press/pressreleases/crohnsteleconference

Advocating For Your Medical Care

2010-09-08T17:29:00.003-04:00

Many of us who have had to make 'generous' use of the medical system - in any country - have found that sometimes we have to be our own medical managers - keeping everything organized, following up with doctors who don't get back to you, asking about treatment options or insisting on tests. Like any field, the medical community has it's shinning stars, and it's... well... other guys. Here are some suggestions and strategies for advocating on your own behalf and being pro-active with your medical care.

In a notebook, write down a list of questions for your doctor in advance of appointments. Bring this with you and actually refer to it during the appointment. Do not let yourself be rushed out before all your questions have been answered. I have found that once I get in there my mind goes almost blank- so this list is a life saver!

As soon as you leave the appointment (maybe in the waiting room or your car), jot down notes about what the doctor told you. Here's where bringing a notebook is doubly useful. If you wait too long, complicated instructions and opinions can be forgotten.

Research the tests or treatments that your doctor is recommending. Call your doctor or the lab where you are heading if you think of questions prior to a test or treatment appointment.

Ask your doctor about treatment options that he has not mentioned or suggested. Ask him or her whether they are a good fit for you.

Always ask about possible side effects and costs related to new treatments or tests you are being prescribed. A pharmacist is an excellent resource for all kinds of drug information.

If your doctor or pharmacist is not familiar with something you mention, ask him or her to look into it and phone you back at a later date.

Always ask for the results of your tests. Even if it's a "if we don't call you, everything is fine" type of situation.

Seek out people who are suffering from the same condition and ask them if they would be willing to discuss their experiences with you. (Ps- ask me about Crohn's!)

If you do not feel that your doctor is doing everything possible to help you or if you do not feel like you can trust your doctor, it is time for a second opinion or new doctor. Ask your primary doctor to refer you to a different specialist.

Be prepared to travel to find the best doctors and medical facilities. It is cost effective to localize expensive equipment and facilities in large cities. Discuss with your employer the possibility of being able to move your work schedule a bit to accommodate appointments that often fall into the difficult M-F, 9-5 time of day. Ask if your doctor has office hours on the weekend.

If there is something you do not understand, ask for clarification. Most doctors do not talk "over our heads" on purpose. These terms are commonplace to them, and they may need a reminder that you don't know what the "normal range" is for that number they just gave you.

Do you have more tips on this subject? Let me know!

Bought A House! Stress Explosion!

2010-08-17T07:13:00.001-04:00

As if getting engaged isn't exciting enough, my darling man and I are also in the middle of buying a house. This is the first house purchase for both of us, and let me tell you- I am sick of apartment living! The house is in the town where I grew up, the 'commuter town' outside of the 'big' city. In the last week it has been a whirlwind of open houses, then making an offer on the one we fell in love with, waiting for our offer to be accepted (agony!), getting mortgage approvals (credit unions are awesome), getting home insurance, etc. Yesterday was the home inspection and the inspector checked it out top to bottom including the in-ground pool (oh yeah) and it's a gem! We are signing the final documents tonight and contacting the lawyer to finalize it all this week. We will be able to move in on the 31st of this month. So soon!

On top of all that has been wedding planning which is slowly gathering steam. I have been a stressball which is wrecking havoc on my poor Crohnsy guts. I am acutely aware that I feel my emotions physically - my stomach has been alternately in knots and full of butterflies. Sometimes 5 or more trips to the washroom. It's crazy. I really do need to calm down, and not let the excitement allow me to lose focus on my health. I am appreciating being in remission, but that doesn't make me totally symptom or risk free. It's the best time of my life these last couple months, I need to enjoy it, and take care of myself at the same time.

Engaged!

2010-08-03T18:00:00.001-04:00

I had a fantastic cruise vacation. Even more fantastic because my wonderful boyfriend proposed! I'm engaged! We are also starting to house shop this month. Woo - exciting times, I hope I continue to feel well. :)

New News - A New Design And A Cruise!

2010-07-21T17:30:00.002-04:00

Blogger recently introduced new template designer tools which are just fantastic. Hence the new design! I hope it's sufficiently cheery.

I'm feeling cheery because in a few days I'm leaving on a week long Caribbean cruise. There are three couples going- we've all been friends for years and years (plus my boyfriend of 2 and a half years). This is especially exciting for me because since my surgery I have been able to eat almost anything. Prior to surgery the prospect of a cruise was a scary "what am I going to eat!?!" proposition. Now, I'm completely excited knowing that I will not be burdened with extreme diet restrictions.

I am also aware that Crohn's free vacations may be few and far between for me. Who knows how I'll be feeling in the years to come? That said, I am determined to make the most of this trip no matter what. We have snorkeling, para-sailing and a jet-boat ride all booked. Fun in the sun (or rain) here I come!

Many readers might be in a different boat right now. If you are feeling bad and struggling with your IBD symptoms - don't be discouraged! Whether it's a big trip, or even just dinner or a movie with loved ones, we can always remember to appreciate the positive opportunities that come our way. No matter how tough it seems, there is always a little (tame if necessary) fun to be had. It also helps to remember that there may be a treatment out there that will work for you. Never give up!

Have Crohn's? No Donating Blood in Canada

2010-07-15T17:53:00.001-04:00

Last Wednesday I did something that took me years to work up the courage to do. I went to the Canadian Blood Services clinic to donate blood. I figured that after a PICC Line and an NG Tube, I could handle this no problem. After filling out the paper work and getting my finger pricked to test my iron levels I was denied based on having slightly low iron. However, the nurse still brings you into a private interview room to explain how to get your iron levels up. During that conversation I discovered that if you are on iron supplements due to your doctor's orders, they won't take your blood because they don't want to counteract what your doctor is doing (building up your blood levels).

Then when I mentioned that the iron supplements were related to my Crohn's disease, she then looked up Crohn's in her binder and discovered that people with Crohn's are 'indefinitely" barred from donating because it would be a danger to the individual. If you had a flare-up or intestinal bleeding, they don't want you to be weakened by giving blood. Too dangerous.

So, there you have it. Got Crohn's? No donating blood for you - at least not in Canada.

A New Lease on Life

2010-06-22T18:08:00.002-04:00

It has now been about four months since my surgery. For new readers- I had about 30 cm of badly damaged terminal ileum removed back in February. A week later I had an obstruction and was back in the hospital but it resolved itself. All in all I had about 3 weeks of hospital time and 5 weeks total off work. So, inquiring minds want to know... how am I doing now?

Fan-frickin-tastic that's how! I am totally off of all Crohn's related medications, pain free, and nearly diarrhea free. The best part is... (drum roll)... I can eat almost anything I want! It's like being freed from 7 years of prison. I went through about 2 months of eating all the junky crap I thought I was missing. I'm now over that phase, and discovering all the healthy stuff like fruit, juice, fresh veggies, whole grains, cheese, salad, yogurt, etc. It's awesome!! I find that un-healthy foods leave me feeling kind of sick and blah.

My boyfriend and I are working on eating healthier and getting more exercise. I find that I now have more energy; whether it's because of my healthier eating habits or the fact that intestinal inflammation is no longer sapping my energy, I don't know. Maybe both. We are having a competition each month to see who can go up the 8 flights of stairs to our apartment the most times. Nothing like a little healthy competition!

Over all I feel like I have a whole new me. A new lease on life. Sadly, I realize that this likely won't last forever. IBD could return in a few months or a few years. I'm just hoping to make the most of this- and bank up as many cancer-fighting foods, and awesome experiences as possible in the meantime. Starting with a cruise this summer, and learning to roller-blade. I also hope that if and when it comes back, I can catch it earlier this time.

Overall, my post surgical resection experience has been a fantastic one. Here's hoping it lasts as long as possible!

Foods That Fight Diarrhea

2010-05-30T17:53:00.001-04:00

Since diarrhea is a big part of having Crohn's Disease, I get a lot of traffic to this blog from people looking for foods that are ok for IBD, and specifically combat diarrhea. This information is all over the web but I thought I would reproduce it here.

The BRATTY Diet - Foods That Fight Diarrhea

Bananas - Healthy and rich in soluble fiber.
Rice - Plain cooked rice helps soothe the digestive system. Also acts as a bulking agent.
Applesauce - Make it without the peel. Unsweetened is best.
Toast - Easier to digest than bread. Helps neutralize stomach acid. Try eating it plain.
Tea - Green tea is best. Unsweetened decaf.
Yogurt - Plain yogurt is the best for this. It also helps replenish healthy gut bacteria.

And there you have it. Foods rich in soluble fiber are generally a good bet. I have also found Cream of Wheat to be a good option when my stomach is troubled. Also switching to rice milk rather than dairy can also help. Keep in mind you don't want to eat only these foods for a long period of time - you will not be getting proper nutrition.

Anyone have foods that they have found helpful?

Helminthic Therapy Follow-Up

2010-05-08T17:09:00.003-04:00

For I while I've been wondering what ever happened to the research that I read in Mental Floss magazine about which was being done by Dr. J. Weinstock. This therapy uses Helminthic worms introduced into the gut which give the immune system something else to attack, rather than your digestive tract. The research sounded promising and I was hoping that it did not drop off of the medical world's radar. I tracked down Dr. Weinstock's contact information and wrote him a (regular mail) letter asking about the current status of his research.

Recently, he kindly replied to me by email:

Dear ******,

I am sorry to hear about your Crohn's disease. Thank you for writing. The agent that we developed is working its way through both the US and European food and drug administrations. The agent is made by one of the pharmaceutical companies making the agent for the various clinical studies under way or planned for the near future. Ovamed is this company. Their web site could contain more information. I wish I could help you more. Best wishes to you and your family.

Regards,
Joel Weinstock

So there you have it, you can find out more about this research at: Ovamed.org, they even have a forum although it's kind of empty.

Here is another website with information about this therapy: http://opensourcehelminththerapy.org

Prednisone Vs Entocort

2010-04-22T17:42:00.002-04:00

If you have IBD then you have probably had to take, or been offered corticosteroids by your doctor. The most common one I've seen prescribed is Prednisone. Drugs like this are majorly effective at reducing inflammation. Unfortunately, while it is pummelling the inflammation, it's wreaking havoc across the rest of your body too. Several months ago when my doctor suggested that I go on Prednisone for the second time, I asked about another related drug called Entocort (generic name: Budesonide). I had heard that Entocort has fewer side effects versus Prednisone. My doctor was in favour of trying it. So I have the benefit of being able to compare them. Predisone comes in tablets while Entocort comes in a capsule which is more targeted to your small intestine. Unfortunately I can't compare their effectiveness because my flare ups were very different situations. But here at least is a list of the side-effects which I experienced. Both drugs were only taken for a couple of months then tapered off.

Prednisone (max dose 40mg - 8 x 5mg tablets)

- Increased appetite
- Insomnia / increased energy
- Thinning hair / hair loss
- Acne
- Sweats
- Fluttering / irregular heart beats*
- Oral thrush
- Joint pain (moderate)

* This one really worried me and was the main reason I did not want to take it again.

Entocort (max dose 9mg - 3 x 3mg capsules)

- Increased appetite (slight)
- Insomnia / increased energy
- Acne (minor)
- Sweats
- Oral thrush
- Joint pain (minor)

Ultimately the main difference is that Entocort did not make my hair thin or my heart beat irregular. Also, Entocort required fewer pills to be taken, although the Entocort capsules did float which made them tricky to swallow. In the end, I much preferred Entocort. My doctor even told me that Entocort is known to cause fewer side effects.

Each person is different and you might have a totally opposite experience, but I thought this might be helpful to someone. If you have taken either of these drugs, please share your feedback too!

Questions and Answers: CCFC Donations and Research Funding

2010-04-07T18:06:00.004-04:00

A few days ago I sent an email to 3 different people within the CCFC (Crohn's and Colitis Foundation of Canada) asking two questions about how donation dollars are spent and how it translates into actual results. Recently as I was making a donation, I wondered whether my donation dollars were funding research that might later lead to a treatment that would cost me a small fortune to access for myself. I also wondered whether promising but potentially non-profitable treatments were funded.... such as the Helminthic Therapy which I had previously mentioned on this blog.

Pleasantly, I received a full reply to my questions only one day later from Dr. Tolomiczenko, the Executive Director of Research & Scientific Liaison for the CCFC. In a nutshell the response is about what I expected. Patents for treatments are held by whoever applies for them, regardless of who funded the research. I can only assume the CCFC does not apply for patents themselves, and why would they? The doctors and companies connected with the research are solely responsible for getting a treatment to market and bear those costs themselves and therefore can charge whatever they want for it. It would be impossible for the CCFC to go the next step of translating research results into actual treatment products, and this is not their mission, nor should it be.

As for which research they fund, this is totally open as long as there is scientific merit to the research and it has a chance of advancing toward a cure for IBD. This is regardless of whether it would lead to a profitable treatment or not. They also focus on research that increases our understanding of IBD and it's causes- and that's a good thing.

So, ultimately it's not the "I funded it, so I should get free access to it" answer that I dreamed of but didn't seriously expect. It's just not feasible. Bringing a treatment from research to actual product (or service) is a lengthy process involving many individuals and organizations. I myself guess that most doctors and scientists working on this research are doing so in the employ of a large company who actually owns the results and would determine it's cost to patients. Companies like this would be unlikely to pursue research that does not lead to a profitable product. I assume that this corresponds to the types of research proposals sent to the CCFC. I think this leads to the question: how do we get companies and scientists to pursue research that is promising but maybe not as profitable? Government grants? Social pressure/encouragement? I'm open to ideas.

I think the CCFC is an important ally in our struggle to find a cure for our disease. I hope we continue to hear good news about advancements in our understanding of IBD and more treatment options - hopefully some that don't involve powerful drugs.

If you are interested in reading my actual email to the CCFC and the reply email I received, they are included below.

Dear Dr. George Tolomiczenko,

I am writing to you as a CCFC member, as someone who has Crohn's Disease, and as someone who makes additional donations to the CCFC. I have a couple of questions related to how the CCFC funds research projects and what happens to the results of this research.

I'm very excited by the projects that the CCFC currently supports, such as the Gem Project, and I think that projects like these are donations well spent. Recently however I was investigating treatment options for my Crohn's Disease and discovered that some treatment medications cost close to $1,000 per infusion! This got me to thinking about the research that the CCFC funds. I have two main questions regarding this.

1) Who owns the patents for, or who determines how much any treatments or cures discovered by CCFC funded research will cost? I find it disconcerting to think that my donation dollars might help to discover a cure or treatment that may later cost me a small fortune to access for myself. Who gets to profit off of treatments discovered by CCFC funding?

2) Does the CCFC also fund research that may lead to viable but possibly non-profitable treatments or cures? Some research on Helminthic Therapy by Dr. Weinstock (His Paper: http://www.newtreatments.org/loadlocal.php?hid=949) comes to mind. This therapy seemed to be showing promising results, and then research for it seems to have disappeared. Is this because it would not be a profitable treatment?

I want to stress that I am proud to be a CCFC supporter and am just curious to learn more about what happens with my donation dollars. Thank you for your time and for all the great work that the CCFC does on behalf of those of us with IBD.

Sincerely,
******* ********

Dear Ms. **********:

CCFC uses a peer-review approach to funding research across a broad variety of areas related to IBD. The majority of the research has been focused on basic science so that we can understand aspects of CD and UC that are necessary - though not sufficient - steps toward cures. The current strategic plan directs CCFC to steer more money toward supporting research that is more clinically focused through targeted initiatives such as the new Pediatric IBD Research Initiative currently in development. To answer your questions directly:

1. Patents are held by the individuals or institutions that file them. CCFC is currently developing an intellectual property policy to give the foundation more of role than it's had in steering research in the direction of development into new treatments and products. This is almost entirely in the domain of companies that have the resources to move ideas from the "bench to the bedside". This typically costs quite a bit and can lead to expensive medications that cost much to make. To recoup their investments, industry charges what payers are willing to pay. The profit incentive is very powerful and serves to drive drug development and other innovations.

2. CCFC is open to funding any and all proposals of scientific merit that have a chance of advancing toward a cure. The helminth exposure work connects with a wide range of "toll-like receptor" and "cell signaling" research that is ongoing among a number of different scientists across Canada. We are working with our scientists to ensure that they translate their science into hope for cures in plainer English but that's certainly not an easy task.

I hope this addresses your questions. I would be happy to talk with you at some point by phone if you would like. This would work best if you sent me a few times that would work for you and we could arrange an appointment.

Thanks for your questions!

George

George Tolomiczenko, Ph.D., M.P.H., M.B.A.
Executive Director of Research & Scientific Liaison
Crohn's & Colitis Foundation of Canada

Recovery and Fitness

2010-03-24T17:33:00.001-04:00

It is now one month since my surgery and I am starting from scratch in the fitness category. My eyes have been opened to how wonderful it is to feel good and how badly I want to re-invent my life and make fitness and active living a part of it. I thought I would share this part of my journey on my blog - since Crohn's Disease can wreak such havoc on our ability to be active, maintain a healthy weight, eat well, get rest and more. Also, watching Biggest Loser can be so motivational! So, here it is.

The Plan

- Gain at least 12 lbs to reach a healthy weight of at least 128 lbs.
- Increase cardio and weight training exercise slowly.
- Build some physical activities into my life. (Buy rollerblades!)
- Get better sleep. No more snooze button!
- Eat a well rounded, healthy diet.

The Status

I am truly starting from scratch. I can only do some stretches and a few very light exercises. The snooze button is my enemy. I have gone nuts on foods I haven't eaten in years - I need to ease up and introduce foods slowly.

Weight: 115 lbs
Energy: Low
Strength: Very Low
Cardio: Low

And thus begins a new adventure!

Signs & Symptoms To Watch For After Bowel Surgery

2010-03-21T18:18:00.005-04:00

I might have caught my obstruction sooner if my doctor had told me what to watch for after she discharged me following my small bowel(intestine) resection. Then I would not have thought it was the flu. Here's a list for anyone interested:

Vomiting (possibly with nausea) - make note if there is blood in the vomit, this usually looks like dark coffee grinds.
Fever.
Change in pain - cramping pain or sharp pains that are new.
Constipation or new diarrhea. If you are not passing any stool or gas call your doctor asap.
Blood in your stools (looks almost black).
Lightheadedness or dizziness.
Infection around the incision site: redness, pus, odour.

This is not an exhaustive list- there may be more things but these are the ones I know about. Hope this is helpful.

Rest. Lots of Rest

2010-03-20T13:29:00.003-04:00

I'm feeling better and better lately, the incisions on my abdomen are healing up nicely. I still have swelling right around my belly button, but it takes a long time for swelling to go down.

The main 'symptom' affecting me is fatigue. The slightest activity exhausts me. Going out to a friend's house leaves me utterly wiped out by the end of the evening. However my surgeon warned me of this so I'm trying to take it easy and not push myself too hard.

The other thing going on is my ravenous appetite. It's like I've been freed from 5 years of food prison and am suddenly on a food-gone-wild binge. Fruit, Subway, tomato sauce, juice, freezies, yogurt, cookies, you name it. Though I'm not sure how well I'm tolerating these things, because I've had mr. D constantly since the surgery. I think I need to take it a bit easier and just introduce new foods one at a time. I also need to gain weight. I'm still way under what I should be. Ensure Plus is helping with this.

All in all I can say that so far, I'm glad I had the surgery.

A Complication & Back Home Again

2010-03-09T09:23:00.006-05:00

Well, I haven't actually been home for the last week. A day after my last post, having only had a day and a half of relaxation at home, I woke up in the middle of the night and promptly vomited into my garbage can next to my bed. This led to me moaning to BF to "Get me a bucket! And some garbage bags! And a wash cloth! *Groan!*". A wonderful beginning to 48 hours of throwing up, nausea, weakness and unable to keep anything down. I would sip water for a few hours then throw it up. Repeat. Spent hours lying on the bathroom floor. It's the flu I said to myself.

After 2 nights and a day and a half of this, my home-care nurse arrived to change my bandage. She took one look and me and decided she couldn't leave me here in my apartment by myself. She called my surgeon to consult and then an ambulance was called and I was brought to the hospital. And admitted again. *sigh* I was there from Thursday till Monday.

Turns out I had a bowel obstruction. The solution to this (before resorting to surgery) is a new kind of torture called a Nasogastric Tube (http://www.youtube.com/watch?v=en5ctZInOyA). Don't be fooled by the calm video. It took them 4 freaking tries to get it into me. The first 3 were rammed down my nose at hyper speed and came out my mouth, leaving me with a bloody nose and the shakes. They then gave me a rest, some 'numbing gas' to breathe then a doctor came and inserted it slowly and nicely. Better.

An NG Tube is a torture device. You feel it constantly. Your body wants to gag on it, it's like a finger in the back of your throat as you talk, turn your head, breathe, swallow, etc. When you want to get up and go the washroom they unhook you from the pump that is emptying your stomach and you get to have a length of tube swaying from your nose. This made me walk like I was on eggshells trying to minimize the swaying of the tube. Luckily coming out it's much easier and a big relief.

I also was 'NPO' which means nothing to eat or drink. Thirst is a powerful motivation. I found myself raving madly in my head about how much I wanted water. That ice is a product of heaven, and why wouldn't the cruel, cruel nurses let me have some ice. Ice is the opposite of hell because hell is fire and water is salvation. On and on raving for hours. It was odd. I would even sneak a straw into the bathroom to take tiny sips of cool water from the sink. It was strange... but kinda funny.

If there's a bright side here, it is that after they pumped about 3 to 4 liters of junk out of me, it relieved the pressure on the blockage which resolved itself. Yay- no surgery required, so the NG torture Tube was worth it.

After a few more xrays (am I glowing yet?), some medications and the tube taken out I was sent home yesterday, now able to keep food down again. I'm taking it easy though, soft light meals, lots of liquids and soups. I also retained water while I was there so my feet, legs and abdomen are a bit swollen. I'm elevating my feet constantly and they are slowly getting better.

Whew- quite the adventure eh? I'm so glad to be home though. Maybe I'll go have a shower.... I think it's been a while. *laughs*

Surgery Success!

2010-03-02T17:08:00.007-05:00

Eight days after my surgery I am finally home from the hospital. I was there for about 18 days total. According to my surgeon it was a big success. No surprises, everything in the right place, 30cm of damaged small intestine removed along with the end of my colon and my appendix, as well as the fistula abscess area badness and even my previous scar was removed and re-stitched so it heals nicer this time. She was able to do it all laparoscopically so I have two small one cm long incisions, a 2 cm incision where my old scar/fistula was, and a 5-6 cm "C" shaped incision around my belly button where most of the work was performed. Each one is closed with disolvable stitches. The middle one around my belly button is the only one that still needs a bandage, it's very puffy and swollen and still draining a bit of blood. This is where the work was performed- apparently they can stretch a small incision like this quite wide as they work, but it is now very sore. She said she went along my entire small intestine and found no other signs of the disease. yay!

Prior to the operation I was on a TPN IV to gain weight and strength for about a week and a couple days. At the start of the operation, they gave me an epidural. I was a basket case of fear! Would the epidural hurt? Would I wake up with a massive incision? Complications? The epidural was not as bad going in as I expected. I had to sit on the table/bed in the OR and hunch my back and put my head down. A nurse was holding me in place with a big bear hug to keep me from straightening up. She had quite a comforting bosom for hugging lol. I tried to study her name tag to not focus on what was going on with my exposed spine. He sanitized the area, gave some small shots of freezing, then I just felt pressure as the epidural was put in. *shudder* It is a very long metal flexible wire. Then they taped it all the way up my back. I then laid down, and they starting giving me the 'good stuff'. My last thoughts were of my family and friends then out like a light.

I next woke up in the OR groggy and totally numb and was told that it was a success. My entire abdomen felt like someone else's body- utterly numb. I was confused and thirsty. I kept gasping for air. After about an hour and 45 minutes in the recovery room I was wheeled back to my room, my parents and boyfriend meeting me in the elevator. I don't remember much of the next few hours except asking repeatedly where my boyfriend was despite him being right beside me. I started coming around more in the evening and remember discovering the catheter that was now my new friend for the next few days (ug) and the oxygen tube in my nose, IV bags going into my PICC line (a more permanent type of IV line), epidural line coming out my back, and slowly creeping presence of pain. Whew I was a mess.

For the rest of that day and the next I was allowed nothing at all to eat or drink. Only a sponge on a stick that I could wet and wipe on my lips and tongue. I cheated and took little sips out of the sponge, but god I was sooooo thirsty. I remember my Mom preventing me from taking too much.

By far the most poignant memory is the first night after surgery. My epidural line turned out to not be in quite the right place. As a result it was numbing my left side and chest, but barely at all for my actual painful areas. You cannot have much in the way of extra pain meds when on an epidural without permission from the anesthesiologist, who had gone home by then. By 1am I was in agony. By 3 am I had passed my previous 10 out of 10 pain level by a mile and reached new levels of pain. I was nearly hyperventilating and gasping for breath. I couldn't even breathe enough to cry. My poor nurses were beside themselves. They gave me a low shot of Dilaudid which brought my 10+ pain down to a 9.5+ for only half an hour but was only allowed it every 2 hours. The poor nurses were not allowed to give me anything else, but there was no anesthesiologist on call who could authorize it. As a result, I went though an entire night of true torture. By the morning, if someone had said- give me all your money and secrets and I'll take away your pain.... I would not have hesitated. *shudder*. By 8 am or so my surgeon came in and took one look at my gasping, pale face and said "This girl has no pain control!" (clinically put but a sorry understatement) and swept out of the room.

She tracked down an anesthesiologist in short order who swept in with a shot of something heavenly into my epidural line and then rolled me onto my side (groan) and adjusted the epidural by pulling it out a few inches, lowering the position of the numbing effect. A few hours later and a shot of morphine on top of it all and I was finally able to put coherent thoughts together and then fall asleep a bit. Fortunately for other people this 'incident' with the badly placed epidural is not common... I don't want to freak out other people before their own surgeries. But whew, worst night of my whole entire life. Times 100.

For the next week I was slowly introduced to a liquid diet, and dealing with considerable but non torturous levels of pain, and helped to hobble to the washroom lugging my IV pole with me. Eventually the catheter was removed and the epidural line. After a day or two I didn't need the oxygen line anymore, and they unhooked my IV nutrition line after about 4 days. I was brought onto solid food but could only pick at it, and drink down Ensure drinks. Food seemed a battle, I was 'full' after a few bites, and crampy and nauseous. But I made myself eat what I could. The last 2 days I was taken off morphine shots and reduced to 2 percocets every 4 hours.

Yesterday I was discharged and I already feel the difference. I'm more rested, down to IBUProphen every 8 hours and 1 perc as needed. Eating is much easier now, I'm sticking to easy things like soups and Mac&Cheese (ate that for the first time in years! Woot!), and going to the washroom is much less arduous. Very gassy and lots of big D, but I feel things improving each day. I can now walk across the apartment with only a bit of a hunch and hobble, and can sit upright for long periods. woot!

So.... that's my whole story, whether you wanted it or not. All in all I'm still worn out and very sore, but getting better each day. Time to go eat some cream of potatoe soup my mom made for me. Mmmm. Calories! :)

Update From The Hospital

2010-02-17T21:08:00.003-05:00

With 2000 calories of nutrition being pumped into my uber IV plus being able to eat soups, jello, juice, Boost drinks, pudding, jello, ginger ale, broth, jello, and ice cream I think the weight is going to start coming back on quickly. I'm feeling much, much better. My doctor plans on trying to schedule my surgery for this weekend!!! Eep! Not sure whether I should keep my laptop at the hospital - it might get stolen. But just in case, I wanted to post a quick update. Thanks for all the well wishes guys!! :)

Going For It!

2010-02-11T20:00:00.004-05:00

Well I finally had an appointment with Dr. Surgeon today and she took one look at me and declared that I don't look good. She wants to do my surgery sooner (yay) but I need to gain weight (despite eating as much as I can I keep losing - 12 lbs under right now) so she is admitting me to the hospital tomorrow (yikes!) and putting me on TPN which is IV nutrition and when I'm a bit stronger she will do the surgery, hopefully in a week or so!

So - a shockingly sudden turn of events, but I am praying that afterwards I will be better than ever. So, here it goes- I will let you know if it's Bright on the other Side of this ordeal!

Heeeere Goes!

(Update: I think the comment form was broken. I believe I've fixed it!)

Give Me The Knife

2010-02-09T17:04:00.005-05:00

Now that I've made my pro-surgery decision I just want to get it over with. I can't stand living like this. I want it now. Gimme the knife!! :)

This will crack you up... at my last appointment with Dr. GI, I found out from his assistant/receptionist that he thinks surgery would be good for me! This from the doctor who sternly recommended Remicade and told me I should save surgery for a last resort! Does he realize what peace of mind he would have given me if he had told me this to my face?! Even if he didn't want to sway my decision he could have said it after I told him I had made my choice. Arg.

Knife! Now! Or should I say... scalpel, now!

I Know What IBD Stands For

2010-02-03T08:17:00.003-05:00

I realize that the official acronym is Inflammatory Bowel Disease. However, I have come up with a better definition:

Inevitable Bowel Destruction!

Anyone else have their own alternative interpretations?
(Yeah, I'm in a twisted mood today. *grim smile*)

PS - What do you think of the new blog design? Since I'm putting a lot into this blog, I figured I'd branch out from the default templates. That butterfly needs to be replaced though.... hm.

Sometimes It's Hard To Feel Bright

2010-01-31T19:46:00.001-05:00

When I write this blog I try to always stay positive, strong, and focused on my blessings. This is usually a fairly natural thing to do because it's who I am. However, even the most positive people can lose sight of those things when situations are hard and emotions go askew.

The last few days have been incredibly hard for me. The wound in my abdomen (a fistula from my ileum) was starting to feel better and heal slowly, but then the pain came back strongly, the nastiness draining out of the wound increased, and signs of infection are appearing. Not to mention how hard this is on your body and how tired it makes you. The nurses at the clinic I've been going to every other day were concerned enough that they switched me to in-home visits and faxed details of the situation to my doctor.

This is horrifying. Gross and embarrassing. Needless to say that my emotions went sideways too, complete with tears, despair, and questioning my boyfriend's ok-ness with all this. It's incredibly hard to feel like someone could still love you and think you're beautiful when you have the bandage equivalent of a mini diaper on your abdomen and walking is a chore. With surgery still 2 months away I felt like making it that long was an impossible ordeal.

But a few things happened that brought the sun back out. The main thing being the right mix of loving encouragement and snap-out-of-it pep talks from BF. The man is amazing. He never wavers; even facing a teary eyed, exhausted, yucky-bandaged girl in jogging pants. He'll say I'm beautiful even when I'm hobbling around in PJs, hair askew from just being washed in the sink and bent over cradling my abdomen. *sniff* The support of loved ones is priceless.

In addition to that, I also had a disgusted with myself moment- had I forgotten all the positive things in my life? The people who have it so much worse? To drive the positive things home, I had an amazing time with friends on Saturday when we finally celebrated our Christmas. Turkey and the works plus a game of capture the flag with Nerf guns! I got to guard the base with a big gun- so that I could remain stationary instead of running up and down the stairs. So even when feeling terrible- you can still have fun and enjoy time with friends. Yeah- I needed that. And if you think a bunch of people in their late twenties running around a house with Nerf guns sounds silly - well you don't know what you're missing! *grin*

So things are rough, but I am working hard not to let myself stay down. A little bit of sadness and tears is healthy and normal, but it's vital not to let it overwhelm you. Get it out and then move on. Always remember that whatever suffering you're dealing with, it's just one thing in your life, it is not your whole life. There is always a bright side, sometimes you just have to search for it.

Surgery, Here I come

2010-01-28T17:10:00.001-05:00

I met with the surgeon today to ask my last round of questions. I had already made up my mind, but she talked me through the whole thing start to finish. She's going to start off doing it laparoscopically first, and only open the whole abdomen if it becomes necessary. That's good! The whole process takes about 4 hours, and I will be in hospital for 4-7 days as they monitor the gradual reintroduction of liquids then food. The day before I'll have to be on clear fluids and some 'prep' called PicoSala to clean me out. She also tells me that one of our goals and a likely outcome is that I'll be able to eat normally again! Woot!

We also discussed risks. There's a 5-7% chance of the attached ends leaking their contents into my abdomen through the sutures. In that case I'll need another surgery and possibly a temporary external pouch as it heals. Terrifying to me but very low probability. Other possible complications are internal bleeding, infection and scar tissue. She said everyone who has surgery deals with scar tissue. But it's only an issue for me if it causes an obstruction. Either way, these complications will be dealt with if they come up.

Afterwards I'm looking at a couple of weeks of fatigue as I recover... and pain of course. She said that when I go to the pre-op clinic a week before, the anaesthesiologist will discuss with me the option of having an epidural to control pain immediately afterwards. Not sure whether that sounds like a good idea or not. We'll see. But after recovery I'm hoping to be a new me. Or rather... the old me of 10 years ago. That would be awesome! The surgery is at the end of March so I have two months to gain weight, exercise my heart, and prepare. I'm scared and anxious, but also hopeful and impatient to be rid of this aching stabbing pain that won't go away.

Surgery here I come, wish me luck!

IBD Flare-Up Friendly Recipe: Peanut Butter Cookies

2010-01-21T21:14:00.001-05:00

Inspired by Kathryn's oh so yummy recipes for Crohnies in remission, I though I would offer a recipe of my own that is flare-up friendly. This recipe has:

- No dairy.
- No spices.
- Nothing acidic.
- No fiber.
- Awesome taste!

Peanut Butter Cookies

Ingredients

Dry
1/2 cup granulated sugar
1 + 1/4 cup sifted all purpose flour (white)
3/4 tsp baking soda
1/4 tsp salt

Wet
1/2 cup margarine (try a dairy free one like Olivina) or butter
1/2 cup smooth peanut butter
1/2 cup brown sugar (gently packed)
1/2 tsp vanilla
1 egg

Instructions

1. Sift together dry ingredients in a bowl.
2. Thoroughly cream together wet ingredients in a big bowl.
3. Blend dry ingredients into wet a bit at a time with a spoon or fork. Switch to using your hands as it gets thicker. Knead well.
4. Roll into 1 inch balls in your hand.
5. Place on a very lightly greased baking sheet with 1 inch space around each one. You can fit about 12 on a standard sheet.
6. Press each ball down half way with a fork.
7. Bake at 375 degrees for 10-12 minutes. Watch for the edges to get a bit brown.
8. Remove from baking sheet immediately and place on a cooling rack. They will feel a bit flimsy when they are still hot.
9. Allow to cool for 10-15 minutes then store in an air-tight container.

Makes about 2-3 dozen.

These are a great comfort food. I like to eat them with my favourite milk-replacement beverage, like rice milk. They might be good with chocolate chips, but I've never tried it.

The Crohn's Dilemma: Surgery or Drugs?

2010-01-18T15:15:00.008-05:00

Do I cut my body, or poison my body?

I've reached the dreaded decision point that many IBD sufferers eventually reach, where your disease is causing you repeated complications whether it be obstructions, fistulas, abscesses, severe pain, etc (for me it's a repeated fistula/abscess in the same spot). Complications which cannot be treated with the milder maintenance drugs or a one time hit of something like Prednisone. It keeps coming back. The abscess bump in my last post actually ruptured through my scar (!) and is now open on my abdomen in all it's gross, packed and bandaged glory, with a round or two antibiotics to be safe. Add Entocort (Budesonide) on top of my Salofalk (5-ASA) to bring the inflammation under control, and as you can imagine I'm pretty messed up and fed up.

So, the wonderful options that lay on the table before me are:

surgery: a resection of 10-15cm of my terminal ileum (small intestine).
powerful drugs: my GI suggests Remicade (Infliximab).
live with it: let the fistula heal, stamp down the inflammation with short term Entocort or Prednisone and probably be in the same boat again soon. Maybe another year if I'm lucky. Continue to be a prisoner of a horridly restricted diet.

Option number 3 isn't even on my radar. I can't keep doing this every year or so. Even when I feel good, my lifestyle is limited by what I can't eat. I'm paranoid to travel. Something needs to be done. My GI recommends leaving surgery as a last resort. He wants me on the new and powerful drug Remicade. My surgeon who treated my abscess last year and looked after me this latest hospital stay thinks I'm an excellent candidate for surgery and would do well. I've also talked to several ladies who are feeling amazing after surgery.

To be frank, the pros and cons of each nearly balance each other out. This is the hardest decision I've had to make in my whole life, and the consequences of either choice could be huge. Huge. I'm sure I'm not the first to face this decision so I'll lay out the pros and cons I've gathered for each one, to help others and to gather some feedback from you readers. I can already say that I'm leaning toward surgery and my family is favouring that side too. It's the risks I know versus the unknown risks.

Surgery: Terminal Ileum Resection

PROS:

- I am a prime candidate for surgery. My Crohn's is localized to a single small, minimally important spot in my small intestine. It is not in my colon (knock on wood). I am thin, young and a non-smoker. My surgeon thinks I would do well.
- The section to be removed is in VERY bad shape. Possibly beyond the repair of drugs.
- I know several ppl who are doing excellent after surgery and can eat what they want. I want to eat normal food again. It's been almost 9 years since I had fruit.
- I can work from home as I recover after surgery.
- I plan to have kids in the next few years. This seems the best option in this respect. My surgeon says it will likely not impact my ability to have kids. The most likely of the unlikely results is one ovary could have a problem of being out of position. She would put it back in position during surgery but scar tissue could affect it.
- I could be drug free or on a low-power maintenance med afterward.
- If the Crohn's comes back, I could catch it early and hopefully not get to this bad condition again.

CONS:

- Scar tissue from surgery could cause problems. May lead to the need for follow up surgeries.
- I will end up with (another) lovely scar on my abdomen.
- A chance of complications like infection.
- Might still need a maintenance medication.
- Crohn's likely will come back again.
- Might only buy me a few years of remission. Then what?

Drugs: Remicade (Infliximab)

PROS:

- Does not involve surgery.
- Remicade has shown to be very effective.
- Some people experience some healing of the intestine while on Remicade.

CONS:

- Long term effects of this drug are unknown/unstudied.
- Effect on my ability to have kids is unknown/unstudied.
- How Remicade interacts with other drugs is unknown/unstudied.
- Cannot take while pregnant. If I go off it to have kids, I may become immune to it and not be able to go back on it. Do I want to save this for later if needed?
- May cause a slight increase in your chances of getting Lymphoma (a type of blood cancer).
- Very expensive and hard to get grants to get on it.
- It is an infusion drug (by IV) and I would have to go every 8 weeks or less to get an infusion (a lovely reminder of how 'sick' you are).
- I likely would still need to restrict my diet like I do now.
- This drug is an immune system suppressant and puts me at higher risk for other types of infections.
- Some patients on Remicade develop an auto-immune disease called lupus-like syndrome.

(source for Remicade info is a Remicade pamphlet and my doctor).

Conclusion

At first blush the choice seems clear because surgery has lots of pros and Remicade has lots of cons. However the surgery cons are major, and the Remicade cons are mostly unknowns and low probability. Surgery is also a very emotionally scary step to take. So the two choices are very close to being even, making this a very hard and stressful decision. I still have to meet with the surgeon to ask my final round of questions before making my decision, in the meantime, any comments or feedback or personal stories would help so much!!

Update: Jan 19 - fixed spelling of Remicade.

Addendum: I just came across this wonderful article which illustrates what it's like for people who have to live with an 'invisible' disease. Please read and share: The Spoon Theory.

Alarmed. And New IBD Support Chat.

2010-01-10T17:23:00.013-05:00

New IBD Online Support Chat

UPDATE: Jan 14: Got out of the hospital in the nick of time. The chat is still on!

I'm organizing the second online IBD support chat. For those who didn't join the first one, the chat is open to those with Crohn's or Ulcerative Colitis. I set up a chat window on a webpage where we can all discuss our experiences, ask questions and offer support. If you would like to join, please let me know either via comments to this blog, or via email (see at right) so I can get a feel for how many people will be attending. I am planning it for this Thursday, January 14 at 7:00pm EST (that's GMT-5:00). It will be here at this webpage: http://www.ofitall.com/discussion/

There is a bit of a warning about this scheduled chat. Since I am in the midst of a big flare up, the chat is dependent on me not being in the hospital and feeling well enough to set it up and host it. So if you visit that page at the scheduled time and don't find a chat window there, you'll know why and I will reschedule. *knocks on wood* Hope to see you there!

Alarmed

Well, the ticking bomb in my abdomen has decided to go off again. Over the Christmas holidays I started feeling the return of pain in my abdomen. I shrugged it off as just holiday stress and food. And more food. By boxing day however it was dramatic and the day after I went to the hospital. To make a long story short I've been back 2 more times since then, and after an abdominal Xray, CT scan, and ultrasound it was pronounced that I have a trivial sounding 'micro' abscess. Micro?!? As the picture here will show, I think 'micro' is some kind of sick joke.

I figured since so many of my fellow bloggers like to share various pictures (often disturbing) I would try for my own disturbing Crohn's picture of the week award. As the picture shows, my new abscess is right behind the scar from the surgery to treat my previous one. The scar which is normally recessed a few millimetres into my skin, is now puffed out and sitting on top of a red little hill about an inch and a half long (the pen in the photo is for scale).

I was given two antibiotics and beefy pain killers. According to the hospital and my G.I. the antibiotics will solve the abscess problem. Really? It seems absurd. As for the painful flare up of inflammation in my ileum my G.I. and I discussed options. Humira and Remicaid came up but I was leary. Nothing will repair the damage already done, but we need to get this inflammation under control. Then, the dreaded P word came up. That's right- Prednisone! I vehemently said that I would not take it again. Not after the fluttering heart beats, fear that I would fall asleep and have a heart attack, hair falling out, and many more side effects. He then suggested Entocort. It is also a corticosteroid but in a capsule form which targets the intestine rather than blanket your entire body with it. He said it generally has much fewer side effects. It's generic name is Budesonide. I know what you're thinking - why didn't he give me that the first time around? Why prescribe Prednisone at all anymore? Who knows. So... I reluctantly agreed.

I've also been referred to a surgeon, the woman who did my surgery a year and a half ago. I'll ask her whether the lump will actually be taken care of just by drugs. However, we will likely be discussing surgical treatment options for the root problem. I must admit, the thought of removing this 'dead' piece of ileum (10cm my doctor tells me) is attractive at this point. Extreme pain, a very restricted diet, these episodes.... a resection is seeming more and more tempting. I just want to live normally for a change. It's a scary option though.

So, in the meantime, I'm taking a bucket load of drugs each day, suffering alarming pains and strange sensations, and waiting for the surgeon's office to call me. Alarmed is the word.

Holiday Food Tips

2009-12-21T12:29:00.002-05:00

The holidays can bring with them a bit of dread for people with active IBD. Food becomes more tempting, less controllable, and more painful. Here are a few tips to make holiday foods less stressful this Christmas season.

- Take your cuts of turkey or ham from the inside of the bird / ham spiral to avoid the seasoned outside skins if seasonings bother you.

- Make your gravy from drippings off the turkey and set some aside for your own non-seasoned gravy. Let everyone else have the flavour-packet enhanced gravy. Yours will be a little blander, but mild on your system. All you need is the drippings, a little water, cornstarch and a pinch of salt.

- Make mashed potatoes with water, a little salt and some non-dairy margarine if milk bothers you.

- Cooked squash or sweat potatoes with a little brown sugar are tasty.

- You can make pumpkin pie without any spices or with reduced spices. Pecan pie is a mild alternative that is usually ok for me.

- Avoid the stuffing if seasonings give you problems.

- Avoid salad if fibrous veggies are one of your triggers.

- Don't forget to take your maintenance medications and to relax a bit during all the hectic holiday bustle.

- Avoid alcohol. Drink lots of water.

- Eat moderately. Regardless of how tempting it can be, don't stuff yourself till you're bursting. A massive meal is hard on your digestive system.

It all boils down to making dishes that are safe for you to eat. If you are having a lot of guests, set aside a separate portion for your own blander versions of the dishes. If you are going to someone else's house, offer to head over there early to help with the cooking so you can make your own separate portions, or bring your own.

You don't have to miss out on the holiday feasting - it just takes a little more care and effort.

Merry Christmas and Happy Holidays to you!

New Crohn's Forum

2009-11-22T11:17:00.004-05:00

A fellow Crohn's Blogger named William has set up a brand spanking new forum for Crohn's discussion. It's a real challenge to try and get a new community like a forum up and running, so if you're interested, head on over and check it out. Join, post a message or two. Come talk to some of us other bloggers.

http://crohnsdisease.forumotion.com/

I'm there under the name "BrightSide" (of course).

CCFC Video

2009-10-31T10:28:00.004-04:00

The Crohn's and Colitis Foundation of Canada has created a new awareness video featuring 2 people suffering IBD. A little boy, and an NHL hockey player.

New/Old Research On Treating Crohn's With Worms

2009-10-26T18:25:00.007-04:00

In the recent issue of Mental Floss Magazine (Nov 2009) there is an article about a potential treatment for Crohn's Disease using safe worms and bacteria called Helminths that used to be prevalent in our bodies in the past. The research is/was being conducted by Dr. Weinstock of the Tufts New England Medical Center. The article claims that most of the Crohn's patients who tried the treatment went into remission!

There is also an article about this research at Web MD which says that 72% of people who used the treatment went into remission. These are amazing findings, however the research appears to be several years old. (Here's another medical article about Dr. Weinstock's research.)

Since I'm curious to learn whether this research is ongoing and if anything has come from it, I wrote to Dr. Weinstock asking about the status of his research. I haven't heard back yet, but I will post it here if I do.

I find this to be an amazing sounding treatment and I'm flabbergasted as to why I haven't heard about it before. Why are we only being given the option of expensive and dangerous drug therapies or invasive surgeries? I urge all my readers to look into this research and ask your doctor about it.

Here is an article on Wikipedia about it, it is called Helminthic Therapy.

UPDATE - April 7, 2010
I received a tidbit of information about this research from the CCFC:

The helminth exposure work connects with a wide range of "toll-like receptor" and "cell signaling" research that is ongoing among a number of different scientists across Canada. -Dr. George Tolomiczenko

Wait And See

2009-10-13T20:13:00.000-04:00

The phrase "let's wait and see" is as old as the medical profession itself. This pronouncement evokes a strange mix of emotions in any patient; disappointment that no definite answers are forthcoming, and relief that nothing serious was immediately identified. Frustration at the process, impatience and worry.

This was my doctor's response at the end of my recent appointment. The appointment by the way that I desperately tried to get into as early as possible. The receptionist managed to squeeze me into a cancellation that opened up a full 2 weeks before my scheduled appointment.

Fortunately (or unfortunately depending on your outlook), the pains I described in my last blog post had lasted for two weeks and then slowly subsided. Which means my appointment consisted of me saying essentially something to the effect of "Well, I was having pains..." to my doctor who scribbled notes about the description and duration of the pains. In the end however he suggested it may have been something acute (read: temporary) and said "let's wait and see" if it returns.

So, I'm back to my old situation. Feeling pretty good though a bit tender, and wondering what in the heck that was.

Thanks to everyone who wrote comments about their experiences on the last post- that really helped me to not be so scared!

When Pain Comes Back

2009-09-23T17:14:00.003-04:00

There's a reason why I say my Crohn's Disease is like a ticking time bomb in my abdomen.

For many months I have been feeling nearly perfect. I was even starting to introduce foods I have not eaten for years- like grape jelly (joy!). I was regularly working out again. But the time bomb never goes away and 2 weeks ago I started getting pains again. Aching pain and tenderness with occasional stabs of pain during the day. At first I thought this was a direct result of stress + fatigue + a huge meal of Chinese food + a tenacious cold. But now, a couple weeks later most of those possible causes have been resolved and I'm left with no excuses.

I have an appointment with my GI scheduled in mid-October, but after a verbal flogging by my loving boyfriend and a reminder that I need to be a vigilant general overseeing my "troops" (you gotta love the dorky-sweet analogies of someone who loves you and is desperate to talk some sense into your stubborn brain any way he can), I called the GI today and got on the waiting list for a sooner appointment should someone cancel. BF was right of course... if it's bad enough that I'm in tears of fear about it- then I should darn well call the doctor and try to get in sooner.

Funny how you start to believe you are just fine and you've put this disease behind you... and then bam! The return of pains can reduce you to a terrified ball of misery. I should not have been blindsided by this. When I had my abscess surgery a year ago, the surgeon (a wonderful woman with a fantastic bedside manner), told me that my section of small intestine had major fibrosis (hardening of scar tissue) and would have to come out "sooner rather than later". My Mom and I had exchanged scared glances and asked what she meant by "sooner". She said something like "a year or so". At the time I sighed in relief that I was not getting a resection then and there, but my my my how fast a year goes by. I now wonder whether these pains are the harbingers of that fateful prediction the surgeon made. Am I headed down the road of a resection surgery?

I pray that option is not in my future, but since I can feel the 3-4 inches of hardened small intestine by lying on my back and feeling along the path of it - like a piece of garden hose in my abdomen - I will not be surprised if that's my only choice. It's just frightening.

Have any of you readers had a resection? How do you feel now?

Crohn's Disease, Food, And Travel

2009-08-17T17:15:00.002-04:00

I recently returned from a one week trip to the west coast of Canada and this got me thinking about how my Crohn's Disease has settled into one particular area of my life: food.

My disease is currently managed. I feel fantastic, bathroom trips are normal, pains are practically gone, I have a lot to be thankful for. I credit my blessings with two main things: the anti-inflammatory drug 5-ASA, and my complex and tightly controlled diet.

To briefly summarize, I kept a food journal for months and went through a lengthy elimination diet process and I now eat zero: dairy, spices, acidic foods (fruit, vinegar, tomato, citric acid, ascorbic acid, lactic acid, etc), gassy veggies, fried or fatty foods, caffeine, whole grains, fibery foods or alcohol. There might be other things I eliminated but I can't remember right now. It's a long list.

This means that I have to cook or prepare most of my food from scratch. Nearly every prepared or pre-packaged food product is spiced, seasoned, covered in sauce or preserved with citric acid or some such. Or contains dairy. Ug. Over a longer period of time I've found a few replacement products at my grocery store like soy cream cheese that tastes good, rice milk, soy cheese slices, un-spiced bacon, egg whites, milk-less bread, margarine etc.

As you can imagine, nearly all restaurants are a no-go for me. You may THINK you are getting a cooked from scratch meal at your favourite expensive restaurant, but no. Most foods are prepared ahead of time or from a box. (But I want PLAIN mashed potatoes! Sorry ma'am they are all pre-mixed with garlic and butter. But can't you just mash me up a fresh potato? Nope.) Which means I am often left with a compromise of plain pasta noodles (brushed with olive oil) which they charge me usually $10 for (!) and some deep fried shrimp appetizer. I realize deep fried is bad, but if I just eat a little bit I'm usually ok. I can eat at sushi places b/c that is fresh, plain and made to order as well as some stir fry places like Mongolian Grill.

However travelling makes me feel a bit panicky. Even with half my suitcase stuffed with food, I still need to make a bee-line for the nearest grocery store upon arrival and cook most of my own meals, so I need access to a kitchen. We went out to restaurants a couple times and the fantastic sushi place we went to was to die for. But the rest of the time I just got noodles and shrimp.

Not knowing where you are going to get your next meal... or being trapped in the airport system with nothing but a few peanut butter sandwiches stuffed in your carry-on can be nerve wracking. It's almost like being reduced to your survival instincts. Food is no longer a given guarantee.

If you are in the same boat as me- I sympathize. I possibly have a cruise coming up next year which is even scarier: no grocery stores!

Here are a few travel food tips:

- Most airlines pressurize their luggage cabins. You can transport food in your luggage except for fruit and meat. Actually anything that needs refrigeration is out of the question. Seal things in zipper bags in case they leak.
- Most restaurants will have a small number of un-spiced things you can get. Plain pasta, baked potatoes, rice, veggies etc. Ask about any un-marinated meats like steaks, seafood etc.
- Sushi places are great for controlling what goes into your food. You CAN get cooked sushi like shrimp and crab, and you can even get vegetarian. Basically veggies wrapped in rice. If you don't like the seaweed wrap you can ask for it to be made without it: wrapped in rice only. Betcha didn't know that!
- If you are travelling in a foreign language country, ask someone to write out your list of food issues in the local language for you, so you are not stuck trying to explain.
- If acid-y things are a problem- ask for no lemon in your water.
- Some accommodations come with a kitchen area- check out bed and breakfasts, cottages and vacation homes instead of hotels.
- Some restaurants or hotel kitchens will warm up your food for you if you bring your own.
- You can bring your own non-liquid food onto a plane in your carry on. Avoid meat or anything that can spoil. Fruit is often not allowed to cross borders, nor can several meats.

On the up side of life, I seem to be growing more tolerant of 'risky' foods and can eat some of them in small amounts. I hope this trend continues!

Busyness and Life

2009-07-05T21:45:00.001-04:00

I imagine that fellow blogger Alicia found herself in much the same situation that I currently do. My life is at a critical crossroads- I'm feeling well enough that I don't need the therapeutic effects of writing this blog, and I'm juggling a ton of exciting personal and professional projects as well as a lively family life and a growing relationship. I find that I need to start giving the most important of these things priority in my life. My time, my energy and my attention. A day long trip to the beach with family (along with a business related talk with my brother) reminded me of what is really important- what I really want in my life. A family and the opportunity to grow my professional projects into something successful.

I tend to be a bit like a kid in a candy store. Every interesting thing that comes my way- I jump on board sampling a little here and a little there until I have a mountain of hobbies, activities and projects. Jack of all trades and master of none. Which is why I've been in a process of streamlining. Cutting out the things that provide the least reward for the most energy expended. Among the things on the cutting floor will be, I think, my poor guinea pig. A fun, small pet who has become a bit nippy due to the fact that I don't have time to give her the attention she deserves. I think I will be putting her up for adoption soon.

Also cut is this blog. Don't worry readers- I won't be taking this blog down or abandoning it all together as I still enjoy writing here. But it does mean that my posts will be less frequent. No fluffy updates on daily life- I will try to just write when I have something meaningful to add on the topic of Crohn's Disease. I'm not gone- just less frequent.

My advice is underlined here: remember that browsing the web can give you a skewed feeling of how bad this or any disease is. Those of us who are feeling good, have less of a tendency to post online. It also means hope for you- nothing is permanent- including suffering!

Thank you for reading and commenting- and please continue to follow this blog because I will continue to write from time to time. Meanwhile- don't forget that my Free Crohn's Tips E-Guide is available for download.

Thank you and best wishes!
~Bright Side

Meditation and Crohn's Disease

2009-06-22T13:19:00.007-04:00

What Is Meditation?

Meditation is the process of training your mind to be calm and focused on a single thing. That's it! I bet you were expecting something exotic and complicated. Actually, meditation doesn't have to involve chanting or bowing or any kinds of rituals or anything like that. In fact all you need is yourself and a comfortable place to sit. During meditation, we are learning how to prevent the random, often unhelpful chatter that goes on in our minds: memories, day-dreams, opinions, criticisms, worries, ideas, complaints, etc. A mind that has been training in Mindfulness Meditation for a while is able to remain focused on a single task or thought without becoming distracted, or lost in thought. This helps us to be more effective in our daily lives, less distracted, and more mindful and present in each moment. Just like an athlete trains his or her body to get very good at given activity, we have to exercise our minds to be clear and focused.

How Does Meditation Help With Crohn's Disease?

As we know, many physical conditions are aggravated by stress, anxiety and worry. Digestive tract ailments are even more sensitive to these mental states. In addition, suffering with a chronic illness can wreak havoc on our thoughts and emotions. We can begin to start falling into unhealthy and unrealistic thoughts such as worrying that we will never feel better, fearing the unknown future, and even sinking into a woe-is-me pattern. In addition, we can sometimes lose focus on what's positive in our lives- our blessings, and sometime we might not notice that we are taking out our frustrations and fears on those around us- maybe being critical, snippy or jealous. Practising meditation can help us increase our awareness of our own thoughts and behaviour at any given moment, and train ourselves to think logically and positively. We can also help ourselves to avoid thinking about our illness constantly- and to be aware of all the beauty and joy around us.

How To Start Practising Mindfulness Meditation

Just like learning any new skill (like how to play piano), meditation takes practise. Be prepared to to practise regularly and to have trouble at the beginning. That said, meditating is very easy- especially if you don't put any pressure on yourself. Try to dedicate a minimum of 15 minutes per day. If you can't find that much time, even every-other day or just whatever time you can find, will be helpful.

Find a comfortable place to sit. Some people may find sitting cross-legged on the floor or on a cushion to be hard on their back or knees, so try sitting either on the floor with your back against the couch, on the couch with your legs crossed, or on a chair with your feet flat on the floor. The key is to be comfortable so that you are not waging a war against physical aches and pains- but not so comfortable that you feel sleepy. The goal of meditation is to remain alert and aware- so sit up straight with your back and neck aligned vertically- use back support if you need to, but do not sink your whole weight back into a sofa-chair or you may get sleepy. If you feel sleepy during meditation, try meditating during a more alert time of day, or this may be a sign that you need more sleep.

For the purposes of this tutorial we will use one of the most common objects to meditate on. Your breathing. The in and out of your breath is a natural and rhythmic thing to focus on. Don't try to control your breathing or to breathe in any kind of purposeful or special way. Just breathe naturally and follow it with your mind. As your breath goes in and out you might focus on various aspects of it- the sound, the feeling in your chest, the breeze at your nose- it doesn't matter- focus on what ever aspect of the breath is most noticeable for you. Beginners might also find it easier to stay focused if you count the breaths. Count to 10 then start back over at 1. We aren't keeping score here.

Here's how it goes. Turn off all sources of noise like TV or radio. Find a quiet room. You take your seat, close your eyes, and say to yourself (silently if you want) that you are going to meditate now. Mentally put all other worries, thoughts and tasks aside for later. Take a few deep calming breaths and physically relax your body - especially points of tension like neck, jaw, back, shoulders and stomach. But don't get so relaxed that you aren't sitting up straight.

Now that you're ready, allow your breathing to return to it's normal pattern. Place your mind gently but firmly onto the breath. This means you are focusing on the breathing and not thinking about anything else. You aren't even thinking about meditating or wondering if you are doing it right. Your only thought is the in and out of your breath. Completely clear of all other thoughts or emotions. Keep your mind there firmly but without force. This isn't a wrestling match with your mind.

Since you're a beginner, the first thing you'll notice is that your mind is a spoiled child. It absolutely does not want to remain in one spot. Other thoughts are going to sneak in as subtle thoughts behind the breath, or even full blown distractions where you totally forget about the breath. What am I going to make for dinner? Did I check the mail? Am I doing this right? My leg is itchy, my butt is sore, my throat is dry. Tomorrow I'm going to the movies and that will be fun. Did I pay the phone bill? Remember that time we went to the beach? I like the beach. etc, etc, etc.

Your child-like mind will try to convince you that all these thoughts are suddenly so very important. Your mind is tricky. It will do anything to avoid sitting still. It will even try to snooze if all else fails. The untrained mind does not like to be held in one place on one single mundane, uninteresting thought. But that is the whole point!! Shouldn't we be able to expect our mind to do what we tell it to do? Aren't we in control? What's with all this spoiled-brat chatter? Part of Mindfulness Meditation is training our mind to do what we tell it to do.

Each time you realize your mind has wondered, don't chastise yourself or be disappointed. You haven't failed. The mere act of catching your mind wandering is what we are going for here. Catching your mind wandering means that some tiny corner of your mind was disciplined enough to notice the wandering. That corner is what we want to build on. So when you catch yourself wandering- be happy that you have succeeded in noticing the chatter. Then, gently let go of the current thought, put it on a shelf for later, then place the mind back on the breath. In and out. Clear. Focused. Wandering...... hey! Let go of the chatter. Re-focus. In and out. And so on!

Each time we catch our minds wandering, we make that tiny mindful corner of our mind stronger and more aware of what's going on. Over time, with regular meditation practise we get better and better at staying on the breath. The length of time that we are distracted shortens. The amount of subtle background thoughts lessens. We learn that holding too tight or too loose to the breath causes the mind to slip out like a wet bar of soap. Our ability to remain focused and mindful strengthens.

As we continue to practise we see benefits in our daily lives. We can remain more focused on a task, activity or project. We become less easily distracted. We are more mindful of what's going on around us and what we are thinking. We catch ourselves being too critical or depressed. We notice when we have been thinking about our Crohn's Disease too much and need to let go of those thoughts and have some fun. We develop a more realistic outlook on life and our stress is reduced as we find solutions to our problems or realize that our troubles are not as insurmountable as we thought. We become more compassionate because we realize that just like us, all of our fellow human beings are suffering with their own troubles and worries that we probably can't even see- just like our invisible IBD.

Meditation is used by millions of people around the world. Us westerners are late to the realization of what a powerful tool it can be. Even science has begun quantifying proof of the benefits of meditation. Practise your meditation regularly for the best results, and be patient with yourself. Just like learning piano, it will take time to see results- but it's more than worth it!

Further Resources

Free guided meditations and audio lessons: Audio Dharma
Message Board (friendly to beginners): E-Sangha Meditation Section
Introduction to Meditation (PDFs and Audio) Introduction to Meditation Free eCourse
Book: Turning the Mind into an Ally by Sakyong Mipham

Bloggers Be Aware of Wellsphere & HealthBlogger Network

2009-06-08T17:44:00.002-04:00

I recently received a comment to my blog inviting me to syndicate my blog through WellSphere (Health Blogger Network) - a website which offer health and wellness information which from what I can tell is mostly made up of other people's blog posts.

I completed the first step but then decided to do some digging. I found some disturbing articles such as:

http://e-patients.net/archives/2009/01/the-wellsphere-blogging-controversy.html

and

http://www.getbetterhealth.com/how-the-health-blogosphere-was-scammed/2009.01.28

And so, I decided NOT to syndicate my blog on Wellsphere. I don't agree with these kinds of practises. Each of my fellow bloggers will have to review Wellsphere for themselves, all I have to say is- search engines are your friend. Research any offer that seems too good to be true.

Hmm. I guess they weren't counting on one of their automated invites to land on the blog of an Internet-savvy IT professional. Online advertisements are cheap and easy to set up and if you have a website full of content with high traffic you can make a bundle of money. If you don't have to create that content yourself- it's almost pure profit minus hosting and bandwidth costs which are minimal. Luckily info about practises like this tends to get out and is easy to find.

A Birthday, Crohn's, and Food

2009-06-08T17:34:00.001-04:00

My birthday came and went recently and I was reminded once again of how Crohn's Disease has settled into my life. It's not all bad actually, but rather.... inconvenient.

A birthday is always a good time to take stock of your life. I find myself sometimes looking at all the things I haven't done or the things I don't have. I have to mentally shake myself and start looking at all my blessings. One of the big ones being that my Crohn's Disease, is for now, being managed with 3 pills of Salofalk (5ASA) with breakfast and 3 with dinner. All in all I feel pretty good, meaning that if I stayed like this for my entire life, I'd be ok.

The main trouble is that I have to be very, very disciplined with what I eat. It was my birthday though, so I thought I could be daring. We went out for sushi and I got my typical shrimp, cucumber and lettuce rolls. I for ask them to be made without spices or wasabi so it's great. But there was other tasty stuff on the table. Some kind of tofu soup that was delicious but also had onions soaking in it. As well as some kind of meat filled dumplings with various tasty seasoned fillings. Don't forget the salad. Raw, fibrous greens. Oy! The next day I was not feeling well at all, though I had to spend the whole day outdoors helping with a huge arts & crafts show. Funny how angry bowels can sap your energy and make walking around feel like a strenuous activity.

I'm feeling better today, but it's still a toss up whether my food fling was worth it. Those were some darn good dumplings. Maybe next time I'll stick to my shrimp and spice-free, cooked, sushi.

Speaking of trouble foods, have you experimented with any common recipes to make them more Crohn's friendly? I recently read that traditionally, teriyaki sauce was just sweetened soy sauce. Here in the west we've been adding garlic and other spices. (yeah we like to cover up our food here). So I'm going to try making my own version of a teriyaki sauce by mixing soy sauce and brown sugar. I wonder how that will taste? I like experimenting with new recipes - tonight I'm going to try making a pork and potato stew on a bed of rice. Good thing I bought a new apron at the art show!

Do you have any good food substitution tips to share?

Here are my favourites:

-Cream cheese >> Yoso brand soy cream cheese
-BBQ Sause on chicken or fish >> honey or olive oil
-Milk on cereal >> President's Choice brand original fortified rice milk
-Butter >> Olivina brand margarine
-Lettuce on a sandwich >> thin slices of cucumber
-Store bought broth/gravy >> home made broth w/ fat skimmed off. Added salt.
-Milk in pancakes or porridge >> water or rice milk
-Milk in boxed mashed potatoes >> water and a tsp of margarine
-Various potatoe chips >> reduced salt Lays
-Whole eggs >> liquid egg whites
-Pudding snacks >> Belsoy brand soy puddings
-Ascorbic acid (Vitamin C) >> Ester C supplements (non-acidic/buffered)

Your Life For One Billion Dollars?

2009-05-19T17:00:00.000-04:00

I love hypothetical questions, so here's one that made me really think, and then made me thankful:

One billion dollars is a lot of money. Enough to buy any darn thing you want, travel or live anywhere you desire and to be whoever you want to be. It's enough money to fund exactly the kind of life you want. What would YOU do for a billion dollars?

What if someone offered you that money in exchange for your life? Your whole life. Hold on now- that means everything. Every item you own from your car to your house to your photographs. Your job. All your friends and family. Even your memories, skills, and experiences that you've accumulated throughout your life. You'd get one billion and your memory would be wiped and you'd be placed in a random city. But you're a billionaire and you could start over from scratch.

Think about it. That's a LOT of money. But it's a high price.

If your answer is "No Way!", that you would never trade your life for that or any amount of money, then you should think about that for a moment. That means that what you currently have is worth more than a billion dollars. That's right, in essence you are already a billionaire. Pretty cool eh?

If you would seriously consider making the trade, perhaps you're still young and unattached, or perhaps you're missing out on making the kind of connections or having the kind of experiences that provide true value to one's life.

What about you? Would you trade your life for One Billion Dollars??

Introducing: The FREE Crohn's Tips E-Guide!

2009-05-08T13:33:00.005-04:00

Those of you familiar with my blog will likely have seen my series of posts with tips for coping with Crohn's Disease. The tips are divided into the main areas of your life: physical, intellectual, emotional, and spiritual. I have now aggregated and improved these posts into a single PDF document, and I'm publishing this as an e-guide (like an e-book but shorter), free for the whole world! You can download it, print it, read it, and share it.

http://www.brightsky.org/crohns-tips-guide.php

When I was first diagnosed, I went searching for a book or anything really to help me with coping with crohn's disease, but I found that most of the books and resources are focused on the medical issues. What is IBD, what are the surgeries, drugs, and tests like. I haven't found much regarding tips for just living day to day with this disease. Now, with a little help from some fellow bloggers I've put together a 15 page booklet with these kinds of tips. I will be revising and updating the document, so if you want to share it, please share this link so that people will always get the latest version.

Share and enjoy! And please, let me know what you think!

My Wordle

2009-05-06T18:21:00.000-04:00

Hehe. Neat!

http://www.wordle.net/

Whew!

2009-05-04T19:56:00.002-04:00

My little sister got married last Saturday. I was her maid of honour. It was an absolutely beautiful wonderful wedding. I got to wear a fabulous dark red, sleeveless dress with elbow length gloves. It was wonderful.

I'm busy. Too busy. The day to day tasks of making a lunch for work, cooking dinner from scratch/from frozen bulk-cooked, dishes, etc, combined with all my little projects I've got going on has be stretched thin. I can't remember the last time I dusted my apartment. I'm feeling the clenched jaw, twitchy eye of stress creeping up.

This added to the fact that I have a bite on my knuckle. Either the fleas which I waged a full-scale war against last year (and won) are back, or I might have bed bugs. I hate this apartment building beyond words. I don't have cats but the area around the place is swarming with them outside. And I know bed bugs are in the building b/c when my sister had an apartment in this building too, she and her boyfriend had to deal with getting rid of them. The thought of another bug battle has me nearly in tears. I'm fed up with this dump - I can afford much better and I think I will start looking for a new place. It's just SO MUCH WORK to move- all my stuff, plus moving all my mail over, etc. *sigh* I'm almost on the edge of a breakdown at the thought of more bugs.

What ever happened to my free time? After I post this, I'll go have my shower. Then I have about 1 and a half hours before bed to myself. I'm exhausted. How did I let it get to this point? I need to figure out how to simplify. Easier said than done when you have a full time job, PLUS a side business.

I need a vacation. From my whole life. *sigh*

Pizza Bad

2009-04-28T17:21:00.002-04:00

Pizza is bad. Soo bad. Pizza is evil.

*groan*

But, but, it's so delicious! But, but, I only had 3 bites!

*whimper*

The almost exact words of my brother's girlfriend standing next to me: "You know that's going to be good for like 20 minutes tops, then you'll be in pain for what, 2 days?". She sounded like my conscience.

I ignored her. And my conscience.

"Hello washroom my old friend... I've come to live in you again..."

Pizza bad.

*beep* *beep*

Cream of wheat is ready. Cream of wheat good. Good recovery food.

*sigh*

Yesterday's Online IBD/Crohn's Support Chat

2009-04-21T15:47:00.001-04:00

The first ever Online IBD/Crohn's Support Chat was yesterday evening, and I think the feeling was that it was a success! We introduced ourselves, told our stories, and asked lots and lots of questions. It was VERY encouraging to get feedback from people who are going through the same thing. Those of us feeling well tried to provide support and encouragement to those who are battling bad flare ups right now. There was certainly a positive mood of friendship. We all agreed that we should do it again!

So, set a bookmark! Here is the location that the chats will take place, the next date and time will be announced here on this blog (and probably echoed by some of my fellow bloggers!). You'll no longer need to request to participate by email.

http://www.ofitall.com/discussion/

Thanks to everyone who participated last night!

~Bright Side

Online Crohn's/IBD Support Chat

2009-04-17T13:44:00.003-04:00

Myself and a couple other Crohn's bloggers, namely Kathryn (http://thegutsygirl.com) and Jenni (http://jennisguts.blogspot.com) are participating in an online support chat for people with IBD/Crohn's disease. We were musing about the lack of support groups in our cities, so I figured, why not just get together online from the comfort of our homes. Ah the beauty of the Internet. *laughs*

The First Ever Online Scheduled Crohn's/IBD Support Chat

When: Monday, April 20, 7:30pm EDT

How To Join: Use email to get in touch with me: brightsideblogger at gmail and I will send you a link and information.

If you can't make it to this Monday's chat, you can still email me and I will let you know about the next one.

Please note: the chat is to be a family-friendly event, it will be moderated.

See you there!

Crohn's Tips - Part 4: The Emotional Side of Crohn's

2009-04-07T16:13:00.005-04:00

Contents
Crohn's Tips Part 1: Introduction
Part 2: Physical
Part 3: Intellectual
»Part 4: Emotional
Part 5: Spiritual
Appendix: Crohn's Tips: Food

Download the latest edition of the full guide as a PDF: http://www.brightsky.org/crohns-tips-guide.php

The emotional effects of Crohn's can often be just as devastating as the physical ones, and a diagnosis is scary and confusing for many people. Fear about treatments and outlook, uncertainty about what your future will hold and embarrassment about the effects and symptoms all jumble together and can hit a new Crohn's sufferer hard. This is a challenging disease, made harder by a stigma surrounding bowel diseases that is thankfully starting to be lifted. People are becoming more open and honest about the conditions they suffer with and those around us are becoming more understanding of the various ailments and disabilities that affect their friends, coworkers and neighbours. While Crohn's Disease can hit you emotionally like a ton of bricks, there is good news and hope- starting with the fact that Crohn's is not a terminal disease, it is treatable and manageable and you can still live a happy, productive life.

The first step to dealing emotionally with Crohn's is to gather a support network of loved ones and professionals around you. Step two is to take charge of your situation by learning and following treatment plans. Step three is to make sure you are viewing your situation realistically and not losing sight of all your blessings under the shadow of this new looming problem.

You can do it. There are many people living dynamic and happy lives even with a diagnosis of Crohn's Disease. Take football player David Garrard, he was diagnosed with Crohn's Disease in 2004 and it has not put a stop to his career as quarterback for the NFL Jacksonville Jaguars. You can't get much more active and challenging than football. Stories like his are everywhere. Ask around and you'll often find stories of friends of friends who have Crohn's Disease or Ulcerative Colitis and more often than not, these people made it through their treatments and are doing well. The number one tip for the emotional side of coping with Crohn's is that you are in control of your own frame of mind. You can choose to be dire and depressed or you can choose to be positive and determined. Staying positive also reduces stress and anxiety- big aggravators of the disease.

Here is a list of specific tips and things to think about.

Turn To Loved Ones. The people you love are an enormous source of help, support, encouragement and even distraction. Make sure your friends and family know what you are going through and don't be afraid to be frank about your need for a shoulder to cry on, an ear to vent to, or just a encouraging presence. You would be surprised how willing people will be to help you. Helping others feels good and strengthens relationships. You can also stay alert for opportunities when you can return the favour by helping someone during their time of need. Many studies show that individuals with good support networks have shorter recovery times and report less severe symptoms.

Socialize. It's so deceptively easy to become a recluse when you aren't feeling well. You try to hide your suffering, fearing the opinions of others, or maybe you're trying to protect loved ones from worrying about you. Maybe you don't want to be a bother or don't want to request that the group eats at a restaurant that you can handle. Maybe you're just miserable and want to be left alone. Shutting the world out is a bad idea. The support of friends and family is vital, and a lot can be said for the welcome distraction and lift that a casual social engagement can involve. Suggest something appropriate to how well you feel, even if it's just a low key gathering at someone's house. At the very least, get on the phone and keep in touch. You don't have to go into details when people ask how you're doing, a short answer will suffice and you can politely avoid any personal questions you don't want to answer. The point is, stay connected. Loved ones are a life-line, in more ways than one.

Observe Yourself. Keeping an eye on your own emotions can be a source of encouragement and also help you catch yourself if you start to sink into a depression. I have found that keeping a personal journal is very therapeutic- it allows me to see how far I've come, recall things I've vowed to do when I feel better, catch myself being too self critical, and recall times when I had a lot of fun. It can be very helpful to pour out your feelings, raw and uncensored, to a journal which won't judge you. It can also help you emotionally prepare for things like surgeries or to hash out what's been bothering you. If journaling doesn't appeal to you, try setting aside a few minutes each day or each week for some self reflection. Make sure you aren't losing site of the big picture and all the great things you also have in your life.

Live When You Can. One of the most emotionally difficult things to deal with when going through a Crohn's flare up, is how it changes your life. You become physically unable to do the things you want to do or are used to doing, and you lose a lot of your independence and have to lean on loved ones for physical and emotional support. One of the most important things you can do for yourself, is to remember to do all those things you couldn't do, now that you feel well. Repay the kindness others have shown you, get out and move, exercise, vacation, make the most of the times when your disease is in remission or being managed. It's too easy to lament your inability to go outside for a bike ride when you aren't feeling well, and then get too busy or distracted to do it when you're well. Have no regrets, so you aren't cursing yourself during your next flare. This doubles as a physical tip, but the emotional benefits can't be overstated.

NOTICE: My full Crohn's Tips series will be updated and released as a free PDF e-guide soon. Check back to this blog for a post about it's release.

Creative Commons License.
You may only copy, share and distribute this work under these terms.

Donation Challenge !!

2009-03-30T11:42:00.003-04:00

I've once again got the donation bug after listening to some great audio webcasts at Everyday Health about the research being done and upcomming treatments for Crohn's Disease. It's so exciting to hear about the work being done to help people like us and the potential for further breakthroughs.

So, I'm issuing a DONATION CHALLENGE to everyone reading this. Here's how it works.

Someone (like you!) makes a new donation to either the CCFC (Canada) or CCFA(America). Whatever amount you want, small or large it doesn't matter.

Let me know about your donation via my charitable site (BrightSky.org) or via a comment here. (Let me know if you are ok with me posting your name/donation on BrightSky.org, or I will just post it as Anonymous).

Here's the kicker: for the first 10 people who do so... I will match your donation with a donation of my own to CCFC. A donation of $10 for each person (for the first 10 people). So your donation is even bigger!

So, let's help out with the great research being done by the Crohn's and Colitis Foundations. Even a tiny amount makes a difference. You can easily donate online on the foundations' websites or off-line via donation forms they provide.

Request to my fellow bloggers: please help spread the word about my initiative by mentioning this post on your own blogs. Thanks!

Crohn's Update and Crohn's Webcasts

2009-03-29T12:36:00.006-04:00

I'm feeling better today which is awesome! I also got my lactose tolerance test results back- no, I am NOT lactose intolerant. Yippee. I already knew that, but oh well, now my doctor knows it too. It doesn't change anything b/c milk still sends me running to the washroom the next day. Oh well. I also asked my doctor what the plan is and he wants to keep me on the Salofalk (5ASA) for the foreseeable future since it seems to be keeping my IBD under control. My next question was, what are the long term side effects of Salofalk? He said it's an old drug and the medical community has gathered a lot of research about it's long term effects. There are almost no long term issues, except for a very small chance of kidney problems- which is why we monitor my blood work regularly. So, that sounds pretty good to me.

I also asked him about the random, maybe once a week periods of about 2-5 minutes of sharp pain right around the spot of my ileum. I said it feels like a big gas bubble passing through my bad section of ileum. He said there's no way to know for sure, but it could indeed be that. And to let him know if it happens more often or for longer stretches. So, all in all an informative appointment and some of my concerns have been alleviated. The trick, my readers, is to bring a list of your questions- and don't let the doctor leave until you've asked them all!

On a more interesting note... Crohn's sufferers may be interested to check out this link. I followed a link on Kathryn's Blog (thegutsygirl.blogspot.com) and browsing around there found this page. It is a wonderfully extensive list of many, many audio webcasts about Crohn's Disease. I love audio- I can listen to it while I work.

A List of Crohn's Disease Information Audio Webcasts:

http://www.everydayhealth.com/crohns-disease/webcasts/index.aspx

Scared

2009-03-25T11:15:00.004-04:00

For the last few days I've been feeling ghosts of pains which I was hoping was due to a recent re-start of my working out. But today I noticed myself holding my side and I nearly broke out into tears. I'm terrified of my Crohn's getting bad again. I know I'm not in remission but I was hoping the 5ASA would hold it at bay for a while. I know I'm over reacting to what amounts to a twinge, but it's hard not to be afraid when you're reminded of your time-bomb when you hear it ticking.

Come to think of it I have been pretty stressed for a few weeks. *sigh* well that's not helping. At least I know what to start with. And I have an apt with Dr. GI Friday.

Saw this on Kathryn's Blog:

Explained: Lactose Tolerance Test

2009-03-18T17:13:00.001-04:00

It's a nice treat when a test involves absolutely no pain or fear, and this is one of those tests. But the Lactose Tolerance Test is balanced out by the fact that it's a huge inconvenience. Expect to be sitting in the waiting room for around 3 hours- bring a book, or an mp3 player. Or both.

You start off by having to eat a special diet 24 hours before the test. Your doctor should provide you with an information sheet about what you can and can't eat. You also can't eat or drink ANYTHING from 12 hours prior to the test. Stick to this carefully or you may be told you can't do the test. Expect to get thirsty. When you arrive you'll be asked to do an initial blow-test. You take a deep breath and blow into a plastic tube which inflates a plastic bag. The lab technician draws a sample of your breath out of the bag via a kind of syringe thing. That's it. Easy as pie.

You then wait while they test to see if your 'levels' whatever that means are low enough for you to take the test. No sense testing you I suppose if you were eating dairy the day before. I was fine so they brought me a glass of some lemon flavoured water stuff. Doesn't taste bad and it's easy to drink. I just don't like lemon so that was a bummer but no big deal. I assume this liquid contains lactose to test you with.

You then wait around the waiting room for 3 hours (!) doing the blow-test every half hour. Expect to have some little burps while waiting around. My hunger and thirst was also growing so that was annoying. But after the 3 hours and your final blow-test you're out of there. Simple, just very inconvenient- especially if the waiting room has uncomfortable chairs.

For myself, I'm not sure what is accomplished by having me take this test. Maybe my Doctor was just curious, because if it comes back positive then I'll have to avoid dairy- but I've already been doing that for years. If it comes back negative, then in theory milk is ok... but I already know SOMETHING in dairy bothers my stomach and I can't have it. So either way I still have to avoid dairy. For me... the test results won't really tell me much. It'll be odd if I do turn out to be lactose intolerant because for the first 20 years of my life I drank almost nothing but milk and ate tons of cheese with no problems. Can you develop lactose intolerance later in life? Can it be related to Crohn's? Questions to ask the doc.

Crohn's Tips - Part 5: The Spiritual Side of Crohn's

2009-03-09T14:27:00.007-04:00

Contents
Crohn's Tips Part 1: Introduction
Part 2: Physical
Part 3: Intellectual
Part 4: Emotional
»Part 5: Spiritual
Appendix: Crohn's Tips: Food

Download the latest edition of the full guide as a PDF: http://www.brightsky.org/crohns-tips-guide.php

I'm betting there are a number of readers who are either wondering what this section will say, or doubting that it will be relevant to them. Especially those who are not religious such as Atheists might think they can skip this section completely. Instead, I ask you to give this a read, because religion and faith are only a small part of what this section will discuss. The spiritual side of your life also includes an examination of your values, your morals, and your overall philosophy of what's important and meaningful to you and what you want for yourself, your family and your future.

What does this have to do with Crohn's Disease specifically? Being diagnosed with a chronic illness can throw our outlook and priorities for a loop. We might feel like what used to be important no longer is, or the looming threat of a flare up or complication might be giving us a sense of urgency regarding finding a direction for our lives and living it to the fullest. Some of us might even be feeling scared and lost, no longer knowing what to hold on to or where our lives are headed. A chronic illness is a reminder of our mortality which can be a frightening, or an enlightening messenger. Here are some tips and things to consider.

Know what's important. Examine your life and yourself and figure out what is most important to you. What do you value and what do you enjoy? What gives your life meaning? Make sure you are living a life that is in line with these things. Whether you are a businesswoman who wants to start a family, or an accountant who'd rather work with his hands there are many people who's lives are not in line with their values and this can cause stress, depression, and anxiety. If you are coping with Crohn's Disease, wouldn't it be better to do so within a life that brings you happiness?

Understand Crohn's Disease's role in your life. You have Crohn's Disease, nothing can change that. However, the role that it has in your life is totally up to you. It can be a tragedy that brings you down, or a challenge that you face and overcome. You can be a victim or a survivor. You can merely cope, or you can shine. While the varying degree to which your particular case affects your life via pain, complications, surgeries and more is something you have very little control over, your own reactions and outlook regarding your situation is 100% up to you. It's not easy, but maintaining a positive frame of mind, focusing on your blessings, and living the best life you can are things you can find deep within yourself.

Don't neglect your faith. Whether or not you attend church or practise at home, whether you believe in God or are unsure what's "out there", if religious faith is a part of your life it can be an enormous source of strength for you and your family. Now is the time to turn to a faith-community for support and guidance. Even if you don't believe in these things at all, the faith and beliefs of a friend or family member can be a source of comfort and encouragement. Even just learning about another faith can help you determine what you personally believe.

Create a positive environment. Make sure that the people and environment you are surrounding yourself with is one that is positive and helpful. We have all experienced the toxic attitudes of miserable people, or a crushing work or home environment. Learn to say no to people who are a physical or emotional drain on you and don't feel guilty for refusing to visit places or situations that make you uncomfortable or upset. These things can physically and emotionally aggravate an already sensitive Crohn's flare up.

Observe yourself. When we are suffering intense pain and fear it can easily be reflected in our own behaviour and interactions with others. Keep an eye on yourself and make sure you aren't taking out your troubles on those around you. Asking for help and turning to friends and family for a shoulder to cry on or an ear to vent to is not the same as being critical or snippy to those around us. Acting with compassion and kindness can also relieve your own tension and can show appreciation to helpful loved ones. Even the nurses in the hospital will appreciate a kind word and sincere thanks.

Get Involved. Volunteering and charity work can be rewarding by itself. Add to that, the fact that you now have at least one cause that affects you directly. The CCFC and CCFA are frequently organizing bike-a-thons, walk-a-thons, pasta dinners, fundraising drives and other activities to raise money for Crohn's and Colitis research. I personally find it kind of fun to donate in the name of trying to help cure myself! In addition there are many other organizations that could use the help, and getting involved will help keep your mind off of your chronic illness concerns, and help you feel less powerless.

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Crohn's Tips: Food

2009-02-01T13:33:00.009-05:00

Contents
Crohn's Tips Part 1: Introduction
Part 2: Physical
Part 3: Intellectual
Part 4: Emotional
Part 5: Spiritual
»Appendix: Crohn's Tips: Food

Download the latest edition of the full guide as a PDF: http://www.brightsky.org/crohns-tips-guide.php

Food can be a nightmarish struggle for people with Crohn's Disease, Ulcerative Colitis, Irritable Bowel Syndrome, Ulcers and more. Often, trying to find pre-made food in the store like soup is a struggle. I for example can't have anything acidic or with spices in it. That rules out ALL canned soups which contain seasonings, onion, MSG, you name it. Even the tins of broth are a problem. I also can't have any dairy which also rules out a lot of things too. So, I've learned to be creative. Here are some tips I've learned over the years:

Rice milk can be a good alternative to real milk for cereal, cooking and baking. The vanilla variety may be too sweet for you, if so try the original. Other variations you can try are soy milk (higher in protein), oat milk and almond milk. Try your alternative or organic food section in the grocery store to find these products. You can even get alternative milk shakes in flavours like chocolate and strawberry.

There are a lot of soy products which are tasty in their own right. I've been enjoying Belsoy vanilla puddings and Yoso brand soy cream cheese.

Always try substitutions. For example, if you can't stomach the spices or the fiber in the seaweed of sushi rolls, make them without spices and with rice-paper instead of seaweed wrapping.

Experiment! Take a tasty looking recipe and substitute or remove ingredients that you can't have. You have nothing to lose but a little time, and in my experience it usually turns out great.

Cook in bulk. Have food (especially meat) pre-cooked and frozen for days when you are feeling awful. For example, cook a dozen pork-chops in the oven. Let cool a bit then freeze them. You can then take one out as needed, add about a teaspoon of water on it, and microwave. Add some canned veggies and pasta, rice, bread or potato for a well rounded, healthy and easy meal.

It's relatively easy to make your own broth as a base for soups, stews and gravy. Simply boil chicken breasts for about an hour till the chicken is fully cooked and the broth is clear-yellow. Strain out the chicken and freeze the broth in ice-cube trays to save for later use. Season to your own taste when you're ready to use it. Lots of salt will reproduce the taste of store-broth. Cook a roast beef in your crock-pot (slow-cooker) and save the juices for broth. Keep in mind that you will want to let both chicken and beef broth sit in your fridge overnight so the grease hardens and floats to the top, then you can skim it off before using or freezing.

Keep an eye on ingredients. Store bought items sometimes change their ingredient list, so always double check. Also if your stomach is bothered by acidic ingredients, keep in mind that many foods have citric acid as a preservative.

If fibre causes you a problem, boiling or steaming your vegetables like carrots will soften them and make them easier to digest, but don't over boil or you'll lose all the nutrients. Also, red-meats are more fibrous than others.

For your worst days, the following foods are very bland and easy on your system: white rice and pasta, cream of wheat, unseasoned chicken broth with grease removed, cucumber without skin, rice milk, weak caffeine free tea like green or peppermint. And always drink lots of water.

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Small Bowel Follow Through Results

2009-01-28T17:11:00.001-05:00

Well, a week ago I finally got the results of my Small Bowel Follow Through. Yeah, the one I got months ago! Turns out that Dr. GI had sent it to my surgeon for some feedback and then both offices promptly forgot about me. Since I had been feeling pretty good I wasn't in a big rush to call about it... but I started to run out of 5ASA and so I had to call Dr. GI and make an apt.

So, it turns out I have Crohn's Disease!! No kidding! *laughs* Well, it did again confirm Crohn's in my ileum, and it also showed the abdominal fistula that gave birth to my abscess that started this whole adventure last summer. So, the doctor wanted to confirm with my surgeon that it was the same one. It was. And it's slowly healing up which is good.

I told Dr. GI that I was feeling quite excellent except for some faint pains once in a while. So he said we would hold off on the more powerful drugs like Remicaide and continue with the 5ASA and see if we can learn the pattern that my Crohn's will take. I mentioned my ongoing food sensitivities (half of a bland single-serving cup of canned-pears sent me to the washroom for 3 days when I experimented with them 3 weeks ago). He said it's probably my Crohn's causing the sensitivity or it could be that I have IBS (Irritable Bowel Syndrome) too! Oh no, I thought I had trumped IBS when I was diagnosed with Crohn's! Anyway, I also can't eat anything with a hint of spice or acid or any dairy at all, so he is sending me for a lactose tolerance test in about 2 months.

So, I came out of there feeling pretty happy, but wouldn't you know it... I'm getting stronger-than-faint pains again which is NOT cool. This is exacerbated by the fact that I've been a bit stressed and very sick with the neverending-cold for TWO FREAKIN MONTHS! That's right, even a dose of antibiotics didn't get rid of this horrid infection that seems to fade till I'm almost perfect then comes back at me with a sore throat, or coughing or runny nose. Or all of the above. Yeah, coughing repeatedly doesn't feel so good on the abdomen. I've also been eating risky foods lately as my friends and I celebrated our Christmas last weekend. So... I'm not really helping the situation. Time to smarten up and observe these pains and see what's going on.

So, that's what's new. I've been keeping busy too so that's great. Sick of this snow.

Also I'm still trying to organize an online Chat with fellow IBD sufferers, but you have to contact me if you're interested so I can let you know the info. So far, I only have one person interested (fellow Crohn's blogger Jenni), so let me know if you're interested too otherwise I won't go to the trouble.

Thanks for reading!

My Ticking Time Bomb

2009-01-06T07:59:00.000-05:00

One of the strange things about having IBD that has been on my mind a lot lately, is that even when you are feeling well, you are always accompanied by a ghost. A ticking time-bomb in your abdomen that could go off any day without warning. A bomb that could hit you with pain, and complications that can side-line your life or put it completely on hold. Complications that can even be life-threatening.

By all estimations, this is not a friendly ghost that provides comic relief and makes for good movies. Instead it's a shadow hovering out of the corner of your eye. A faint twinge in your abdomen today. A few extra trips to the washroom or some unexpected fatigue tomorrow. A gurgle or a whisper of almost-pain. A constant, constant, constant reminder that you are not perfectly well. You're not cured. And more problems are probably coming sooner or later.

No, my time-bomb is not a friendly ghost, but it can be an invisible teacher. It is talking to me every day, whispering and sometimes yelling an all-important lesson: Life is precious. Health is precious. Time is short. Time is our most valuable posession. Make the most of it, right now, while you can. This teacher's message is sometimes a scary one. The worry that I'm wasting my time or running out of time can sometimes be frightening, but I remind myself that I don't have to live a perfect life, just a mindful one. Mindful of my blessings. Mindful of what I'm doing at any given moment. Mindful of what and who is around me. A life lived well is a life appreciated. A life not taken for granted. It means knowing what's important to you- and going for it.

This ghost is never gone it seems, even when I'm feeling great, the faint time-bomb can still be felt deep inside. Perhaps it's a good thing- so I don't forget completely about my Crohn's and I can always be reminded to live in each moment. It sure would be nice though, to have that ghost take a vacation once in a while.

Merry Christmas From Bright Side

2008-12-23T07:55:00.004-05:00

I try to keep this blog slanted toward a positive outlook, and try to give encouragement and hope to my readers. So let me share a little of my copious Christmas spirit with you today.

Christmas is my favourite holiday. By far. I love spending time with my family and friends. I love the lights and the music. I love the traditions like decorating the tree, putting up the Christmas village, and making chestnuts. Over all of these heart warming events is the general feeling that fills the people throughout the city. People give generously to fundraisers and charities. They wish you a Happy Holidays with genuine feeling. They smile more. There's a hint of what humanity could be, if we could figure out how to carry this good will in our hearts the whole year through.

I like giving gifts to people. I put a lot of thought into the gifts, and wrap them carefully. I'm always so excited to watch someone open a gift that I picked out. I also try to carry a few extra $5 bills in my wallet for the various charity collections around. Giving is just fun.

During the holidays I like to sit back sometimes and just become a quiet observer during the Christmas drama: the debates, arguments, jokes and laughter. While I sit quietly watching the whirlwind around me I remember how thankful I am to have such a supportive family. This year, I have an extra reason to be thankful. Just a few months ago I was in an agony of pain. I had just learned I have Crohn's Disease and was going through a surgery, a course of dreaded Prednisone, and more pain than I have ever experienced. But today, I'm feeling great. I can feel deep inside that things are still not 'right', but my pain is gone, my surgery wound is closed, and I can physically live my life as I choose. See, there is always hope!

Life is fleeting. For those with a chronic illness, we also know that periods of feeling well can also be fleeting. This fact only makes them more valuable, and underscores the need to make the most of what we are capable of doing right now. I know many of my readers are in pain at this very moment; but do you feel well enough to sit carefully on the couch and visit with family? Can you snuggle up with a hot-water-bottle and a loved one and watch a Christmas movie? Even if it is limited- the things that you can do now are precious and worth being thankful for.

The Holiday Season is exactly what you make it. So, this Christmas, I challenge you to ignore the materialism and stay in your budget, avoid family drama and just enjoy the presence of those you love. Remember your blessings, share what you can, and hug the most crotchety person in the room. Make your Christmas this year, the best one yet.

Merry Christmas and Happy Holidays to You! Thank you for reading!

Specific Carbohydrate Diet: Facts

2008-12-18T16:20:00.004-05:00

Ok, if you have Crohn's Disease, you can't avoid hearing about The Specific Carbohydrate Diet, mostly because the proponents of this diet are anything but quiet about it. I personally have strong feelings about this diet, but I've decided to post the facts, followed by my opinion and let you decide for yourself:

The Facts

"There's little scientific evidence to show whether it is truly effective or which patient population it helps."
"It's getting mixed reviews from both patients and physicians."
Some people are actually helped by this diet, and are vocal supporters. But the percentage of people it helps versus people it does not help is unknown.
There is the potential for nutritional deficiencies on this diet.
You should never stop current treatments and replace them with trying a new diet plan.
You should always consult your doctor and continue regular monitoring when trying a new diet plan.

Source: http://www.ccfa.org/about/news/scd

My Opinion

This blog receives frequent comment-spam and emails trying to blatantly push the Specific Carbohydrate Diet, as well as some that are vague and friendly, but if you follow their links or suggestions far enough it leads to SCD websites. This makes me suspicious. And annoyed. *
Different diet plans help or bother people differently. Two people with Crohn's Disease may have totally different food sensitivities. The SCD may in fact just happen to coincide with what helps some people. Just like my diet of no dairy, fibre, spice, acid, caffeine, or gassy vegetables helps me.
Keeping a food and symptom journal will help you determine foods that worsen or improve your symptoms. Take this journal to your doctor for help analyzing it.

So, to be clear, I do NOT recommend the Specific Carbohydrate Diet. I tend to be practical and if there's no science behind it, and the people running the websites for it have to resort to spamming blogs and forums to get recognition, then I just can't see it as credible. That being said, if you're curious about it or any other diet plan, or curious to study your own food tolerances, talking to your doctor should be priority number one.

Now, all you SCD fans out there, feel free to post your stories here, but DO NOT include links. Note that I will NOT publish SCD slanted comments in other posts on this blog, so you can stop spamming this blog already.

* Let the comment flaming begin. Note that I will NOT publish comments that contain SCD links. Period.

Oh come on!

2008-12-17T17:33:00.002-05:00

Really, sometimes I think the universe has a sick sense of humour. I finally start feeling better from the Crohn's madness of the last few months, only to be cursed with two flu/colds in a row. I'm back to huddling on the couch nursing a sore throat, fever and headache, at just the moment when I want to be living it up and appreciating the easing of my Crohn's symptoms. Outside my window is about 4 inches of freshly fallen snow, just begging me to come out and play in it. Yeah, yeah I'm not a kid, but I still love a walk in the woods after a fresh snowfall. I love how the snow pads the sound and makes everything quiet and muffled. My goal of 5,000 jumping jacks before Christmas is also much more difficult now. *sigh* However, I want to use this as an opportunity to remind my readers, and myself- that when you're feeling good- take advantage of it! Appreciate it! Get out and do something- anything! Because you never know when the next flare-up or even just the flu, is around the corner!

Woman with a Plan!

2008-12-06T12:33:00.004-05:00

Well, this week I've been in agony of a terrible cold that has hit me like a ton of bricks. Just when I was starting to feel pretty good too! Arg! But... at least this will pass (hopefully soon), so in anticipation of that, I've been working on a plan. A get healthy plan. A take control of my life plan. I like to have a plan. I'm a list maker and a bit of a brainy nerd so this is my bread and butter. However, no matter who you are, taking a proactive approach to your life is hundreds of times better than just being a passive witness to your life, or being at the mercy of your circumstances.

I was reading Alicia's blog (I'd Like To Buy a Bowel) and I've been just utterly amazed and inspired by the fact that she's feeling great and doing all kinds of running and marathon training and... wow. That girl rocks. I was thinking that, when I have periods when I feel well, I don't want to just take them for granted and let them pass me by like I have in the past. I'm going on about 15 years now of on and off resolutions to get in shape. And this is it! While running is not an option right now (I'm looking out at 4 inches of snow on the ground) and I'm not really a fan of running, but I wanted something easy that I could do throughout the day and keep track of. So, December 1st I set myself a goal of doing 5,000 jumping jacks before Christmas. Now... when I set that goal I didn't have a cold, so it's now become more challenging. But basically I have to average 200 per day till Christmas. Since I've been sick, I now need to step up my game. However, the great thing is that I can do a few at a time in the morning, sneak them in the washroom at work, in the evening and spread it out so it's doable. I have a dry-erase marker keeping track of my progress on a big mirror by my front door. I'm currently at 700! Yeah, that's actually not so good, I'm behind, with only 18 days to go, I now need to average 240 per day! Yikes!

But anyway, this is just a fun little way of motivating myself and maybe others around me to join in. I hope to set a new goal for January. And the Christmas gift to myself will be to feel better, have more energy and to be proud of myself for sticking with it. With a chronic illness you have to make the absolute most out of the good days as you possibly can. We can do it!

Oh, and all this snow, Christmas lights, wrapping paper, music and more has got me in a festive mood! So, I just want to say Merry Christmas and Happy Holidays to everyone! Get out there and give generously of yourself, and share as much joy, laughter, and friendship as you can!

Scheduled Group Online Crohn-ies Chat

2008-11-30T17:12:00.005-05:00

Hello everyone!

*** Calling All Crohn's Sufferers! ***

After being disappointed to learn that my local CCFC chapter does fund raising meetings, but not support meetings, and since I've recently 'met' several other Crohn's bloggers who all have their own unique experiences but are all supportive and awesome people, I've decided to organize a scheduled online chat, open to people with Crohn's Disease or who know someone with Crohn's. The chat will be at a scheduled time and will be through a website with a chat room set up. It will be invitation only though, so we don't have the general public stumbling in. I would like to create a positive and supportive event where we can all share stories, provide encouragement and answer each-other's questions.

I'm hoping that we will have these periodically if all goes well, so even if the date/time of the first one isn't convenient for you, there will be other chances. If you're interested in receiving an invite (a link / password), please send me your email address by emailing me (brightsideblogger at gmail). Tell me a little bit about who you are (are you a fellow Crohnie or do you know someone with Crohn's?). I will collect the email addresses of interested people and will send out the info once it's set up. I'll post the date and time here once it's decided on, and I've received enough interested people.

Please note, that family-friendly language is to be used at all times and I will ask that people stay on topic, and do not post advertisements in the chat. There is a certain diet that claims to "cure Crohn's", this is not scientifically proven and linking to sites about this diet or "pushing" this diet during the chat will not be tolerated. I'm hoping to create a friendly and safe atmosphere where we can share our experiences. Thank you for understanding.

Again- if you're interested in being notified about the location when it happens, please email me.

Crohn's Tips - Part 3: The Intellectual Side of Crohn's

2008-11-27T16:56:00.014-05:00

Contents
Crohn's Tips Part 1: Introduction
Part 2: Physical
»Part 3: Intellectual
Part 4: Emotional
Part 5: Spiritual
Appendix: Crohn's Tips: Food

Download the latest edition of the full guide as a PDF: http://www.brightsky.org/crohns-tips-guide.php

Taking a smart approach to your chronic illness can have real benefits for you, both mentally and physically. The bad news is that you can't cure yourself, but the good news is that you can turn having Crohn's from a scary confusing situation, to a manageable bump in the road. You can go from being a victim, to living a full, happy life. This section contains tips for things you can do from an intellectual perspective, including learning, organizing and acceptance.

Learn the facts: the very first thing you should do is eliminate any confusion or general questions you might have, and take away some of the ominous mystery of your diagnosis by learning everything you can from reputable sources. Go to your local library or bookstore and pick up some factual books about Crohn's Disease such as Crohn's and Colitis: Understanding the Facts About IBD by Hillary Steinhart. Knowing what it is, the treatment options, and what is ahead of you can help you face and accept your situation. It's probably not as scary as you thought, and will keep your imagination from inflating your worries.

Avoid sketchy information: There are a lot of websites out there that claim to know how to cure you. Special diets, miracle vitamins and other unproven 'solutions'; but there is currently no real cure. Make sure you know the difference between reliable websites and books, and those which are pushing an agenda or product. Always get your information from multiple sources to be sure about it, and then check with your doctor before taking any action, trying any diet, or taking any vitamins or medication. Also be aware that spending too much time on forums and blogs can leave you with the impression that there is no light at the end of the tunnel. Remember: people who feel awful may want to post on forums, but people who feel great might be too busy to post their success stories; so online, Crohn's Disease may seem worse than it is.

Keep a personal medical binder: In this binder keep all the information sheets from the pharmacy about your medications, a list of your doctors and their contact information. Your current medications and vitamins. Information sheets about hospital stays and surgeries. Write down a list of questions for your next doctor visit. When you get home from a doctor visit, record everything you remember that he or she told you (or bring your binder to the appointment and jot down notes while you're there). Keep a symptom journal and record what you eat, how you feel, your pain level, temperature, washroom trips and irregular medications you had to take. This may seem silly, but having it all together in one binder or folder will be a lifesaver when you're trying to remember whether some feeling is a symptom of one of your medications and whether it's serious or not. It also helps to recall the advice of your doctors long after you would have forgotten, or to watch for a pattern of symptoms or worsening pain. Once I was brought to the hospital in an ambulance and had the sense to bring the binder with me. It helped to speed up my admission to the ER because the admitting nurse could fill out my paperwork quickly from my binder notes, rather than ask me questions through the morphine haze.

Keep your medical information in your wallet: Keep a folded sheet of paper in a visible spot in your wallet that says Medical Alert on the outside. Inside record your emergency contacts, doctors, medications and allergies. Also record your diagnosis of Crohn's Disease and any recent surgeries. Consider purchasing a Medical Alert bracelet or necklace. Also give this information to a loved one in case it's needed.

Keep your medical receipts: You may be able to claim medical expenses on your income taxes.

Watch your state of mind: Keep an eye on your thoughts. Are you making problems seem bigger than they are, or are you ignoring serious issues? Are you following the advice of your doctor? Are you sadder than usual or possibly depressed? Are you avoiding the situation or refusing to ask for help?

Remember to be thankful: Every single person (that includes you!) has something to be thankful for. In the thick of a Crohn's flare up it can be hard to remember that there is more to life than pain, washrooms and food you can't eat. Stop for a moment to make a list of all the good things and people in your life. Compliment yourself. Try not to let your Crohn's Disease taint the rest of your life too.

Accept yourself: You have Crohn's Disease. That is a part of you, but it's not all there is to you. Accept what you can't change and gather the determination to make the best of the precious life you have. Mental attitude can mean the difference between misery and happiness. Look in the mirror and vow to live life as fully as you are able, and to find joy where you can. When Crohn's gets in your way, take things one day at a time and you'll get through it.

Help find a cure: Check out the CCFA (www.ccfa.org) or CCFC (www.ccfc.ca) websites to learn how you can get involved with helping to fund research, raise awareness, or support others in your community. Every little bit helps.

Have fun: Make sure you aren't thinking about your disease all the time. It can gnaw at the back of your mind constantly. Don't let yourself get caught up in this pattern. Take a break and relax. Talk to friends. Do something you enjoy. Watch a movie. If your mind is constantly churning, try techniques like meditation or talk therapy to clear your thoughts and refocus yourself.

Having a chronic disease can be scary. But being smart, organized and accepting can clear the confusion and reduce or eliminate your fear.

If you have intellectual side tips to add, feel free to post your comments or feedback here. Stay tuned for the next part in this series.

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Wound Healed (ish) !!!!

2008-11-20T17:11:00.003-05:00

Today, the nurse discharged me from the home-care agency. My wound has healed over (woo!) though it is still tender and sore, at least it's now dry and light pink.

*dances a jig* WOO! YEAH!

I'm happy to reach this little milestone, it gives me more freedom to take care of myself and not have to be home on a given day waiting for the nurse. Not to mention the joy of being able to shower daily now! Yeah! Though a small part of me (ok, a big part) is going to miss my nurse, and is a little scared to no longer have someone looking out for me on a weekly basis and answering my questions. It was reassuring to have someone who I could turn to if I had a worry. Now I'm left with having to phone Dr. GI and get his receptionist, leave my question with her, then wait sometimes more than a day for a response. Bah! Oh well. Time to be brave!

I'm going to continue checking my temperature, weight, pain level and the look of the wound on a weekly basis- my little collection of medical papers and journal has become quite an interesting duo-tang of Crohn's-y goodness. *laughs*

Anyway, I want to tell my fellow Crohn's sufferers out there- don't lose hope! And take the small victories when you can get 'em!

Dear Crohn's Disease

2008-11-16T10:30:00.006-05:00

Dear Crohn's Disease,

You suck. And I mean that in the strongest sense of the word. You're painful, gross and embarrassing. If that wasn't bad enough, you're also incurable and difficult to treat. No one likes you. Really. Despite all that, you decided to take up residence in my beleaguered abdomen. Sometimes I look down at myself and imagine I can see you lurking around with shifty eyes, working your evil schemes. Sometimes when I'm alone and overwhelmed, I wonder 'why me?' and the tears come.

However, here's the thing, something you don't know. I have this amazing gift- life. It's precious beyond measure and I only get one. I have no idea how long or short my life will be. Where it will take me, or what's in store for me. But I do know that I have this life. It's mine, not yours. So guess what? I'm not afraid of you. I'm not your victim. I'm not at your mercy. I have this life, that is more valuable than anything, and I'm not going to waste it. You, as challenging and difficult as you are, cannot stop me from living my life to the best of my ability. Maybe you might slow me down, or affect my options and choices, but I am still going to live my life as fully as I can. I'm going to face you head on, deal with your schemes, and move forward. You will not be a shadow over my life. I have a choice, and I will always choose to live my life on the bright side; with hope, family, friends, love, joy and compassion. As long as I have those, you are powerless, and I am free.

Topsy Turvy

2008-11-14T16:58:00.001-05:00

A strange mood hangs over me today. A nurse came today (the head wound care nurse this time) and she assessed my wound and said it looks great and that it's almost closed. She reduced my nurse visits to once per week now. So I suspect my time of having regular home nurse visit is soon to come to an end. This should be excellent news- and it is. However, a small part of me doesn't want to lose the comfort of having a trained nurse come to my home a few times a week. Whenever I have odd pains or concerns, discussing it with my nurse has usually relieved my concerns.

For example, yesterday I was back up to a spike of pain around 6/10. I was feeling bloated, and wasn't making my usual 5 trips to the washroom. So naturally I was concerned. I took half a pain pill and used a hot water bottle and mild stool softener and today I feel a bit better. I also mentioned it to the nurse who reassured me that the Barium from my small bowel follow through could cause a bit of constipation. So it's nice to have that kind of access to someone with knowledge. It's also nice to be taken care of. She checks my vitals, asks about my symptoms and oohs and aahs over my slowly closing wound- telling me how well I'm doing. Maybe it's childish- but I'm going to miss that motherly attention. This is probably heightened by the fact that my nurse is such a sweet kind woman. But, I'm healing up, so it's time to move on and face the future bravely and nurse free (soon).

I think I know why I feel compelled to blog about my Crohn's. It's because no one really, truly wants to listen. And people really don't know how to console someone with a chronic and often gross disease. No one wants to hear about my bowel activities- and I don't really want to tell them. But when I go into generalities about feeling scared or sad, my family and friends, for the most part, don't know how to respond. Their response is often a generic: "don't worry, you'll be fine." or "It'll get better, you'll see.". As much as my loved ones are trying to help, they really aren't. And I don't blame them. I'm the sick one and even I wouldn't know what to say to myself. I think what I really want is someone to listen, without changing the subject to an unrelated topic, or to what's wrong with them, or whatever. Or to lecture about what they think I should be doing. I understand their discomfort... I bet it puts their own mortality in perspective, and, hell, who wants to hear about diarrhea and cramps even if I do put it in general, non descriptive terms. So, I'm not mad or disappointed in my support network, I just... hell, I don't know what I want. I do wish my local chapter of the CCFC had support group meetings, not just fundraiser planning meetings.

Anyway, obviously I'm feeling a little blue. I have always fought a personal tendency to wail against the unfairness of life, or to focus on the things I don't have rather than all the things I do have. I guess I just have to remember my own advice to count my blessings. And maybe explaining my need for a open ear to my family and friends would help them, to help me.

Explained: Small Bowel Follow Through

2008-11-12T16:38:00.005-05:00

Today I had my first Small Bowel Follow Through. This is a test that allows the doctor to see an x-ray of your small intestine as the Barium you swallow moves through and shows up very clearly on the x-ray. It wasn't too bad after all, and for me it took less than an hour.

The day before, I had to eat a light early supper and then no more food. Then, nothing to drink after midnight. When I was called out of the waiting room, I was initially told to change into a hospital gown, but when the technician saw I was wearing athletic pants (no metal) she let me leave my clothes on. I was brought 2 cups of thick, chalky white liquid Barium that looks a little like white paint. I'm not going to lie, it tastes gross and feels grosser. Even with the faint fruit flavouring. My body just does not want to swallow something of this bizarre consistency so I really had to concentrate to get it all down. That took me about 10 minutes of fighting the urge to gag and ignoring the rumble in my stomach.

Then I was brought into the x-ray room and asked to lay down on a platform. I had to hike up my bra so the metal in it wouldn't interfere and they lowered a camera arm over my abdomen. The tech took an x-ray of me lying flat on my back. When she looked at it she was surprised how far the Barium had moved already and she moved the camera down toward my mid stomach a few inches and took another shot.

Then I was returned to my chair in the hall outside the X-ray labs and waited around with my Mom for about 20 minutes. Then I was brought back in, this time to a different x-ray lab (just a coincidence I think) and two techs this time took images of me rolling over on either side, the tech had a little wand thing to press down on my stomach gently. I could even see the video of my insides on a monitor next to me and could see my insides squirming around (wish I had been wearing my glasses for a clearer view). I'm amazed how much your insides slosh around when you are laying still! The fact that I could see video however means to me, that I was being constantly bombarded with some level of radiation. Not cool.

After a few images were snapped and a bit of moving side to side- that was it. I was allowed to go home. I did ask the first technician how many x-ray tests like this it would take to affect my ability to have children some day. She looked at me with wide eyes and asked- "Are you pregnant??". I said no, but I want to know if all these tests I'm having will make me infertile. She said, "oh, you don't have to worry about that at all. How many x-ray tests have you had like this?" I said about 4, and she smiled and said "oh, you don't have to worry about that at all". So I feel better about that.

When I got home I started drinking tons of water as instructed... and a little over an hour after I first drank the Barium, it started leaving my body (ahem to put it nicely). It's pretty gross, but because your body does not absorb it... and it's a liquid (or maybe it's a fine powder mixed in a liquid- it IS a heavy metal after all) your body just passes it through without digesting or absorbing it. I'm not concerned about how fast it passed, b/c my breakfast didn't follow it in the same amount of time. So no worries here. Update: 48 hours later it's still not all out of my system. And I did get some bloating and a bit of pain a day after. My system did not like the Barium that's for sure. Found this quote:

"Following the examination, barium may cause constipation. The patient may be advised to drink plenty of fluids and eat foods high in fiber to expel the barium from the body." (mcghealth.org)

Overall the worst part is drinking the Barium. It's not a scary test after all- and it does give your doctor a good view of an otherwise difficult to access part of your digestive tract. So if you're scheduled for one- don't worry, it's not too bad.

Small Bowel Follow Through Tomorrow

2008-11-11T07:01:00.002-05:00

Today I'm feeling pretty nervous. I'm going for a Small Bowel Follow Through tomorrow morning. So no food for me after dinner today, and nothing to eat or drink after midnight. The test involves swallowing some stuff that is visible on an X-ray, usually Barium, and then having an X-ray picture taken every 15-30 minutes or so until it travels all the way through my small intestine. I've read that the test can take anywhere from 1-4 hours! I'm not worried so much about the test itself, other than how long is it going to take (and feeling bad for asking my Mom to come with me, before I knew she would be sitting around for hours!). Although I'm not really happy about all the radiation I've been getting lately (I hope it doesn't affect my ability to have children some day).

What I'm most worried about is what the results of the test will show. My doctor wants to use this test to see if I have other sections of inflammation, or if it is just the one short section. I've been clinging to the hope that it's only in one small spot... and I really don't want that hope to be shattered. These results will also determine what my future treatments will be. Oh boy.... deep breath! I'm scared.

Crohn's Tips - Part 2: The Physical Side of Crohn's

2008-11-02T10:54:00.028-05:00

Contents
Crohn's Tips Part 1: Introduction
»Part 2: Physical
Part 3: Intellectual
Part 4: Emotional
Part 5: Spiritual
Appendix: Crohn's Tips: Food

Download the latest edition of the full guide as a PDF: http://www.brightsky.org/crohns-tips-guide.php

Anyone suffering a physical illness can attest to the fact that physical problems and issues are first and foremost in their minds. Sometimes we can get so caught up in caring for our beleaguered bodies that we put the rest of our lives on the back burner. Pain is a hard thing to ignore. Crohn's pain is a complicated beast to tame, and since there is no cure for Crohn's, it can become a question of managing rather than eliminating it. This can be disheartening, but luckily there are options- both medical and otherwise. In this section of my Crohn's Tips series I will list some suggestions, tips and strategies for dealing with the physical effects of Crohn's. Some of these you have probably read countless times, but hopefully a few will be new and helpful.

Get a pit bull of a doctor: Make sure your gastroenterologist is giving you all the tests available to diagnose your condition, and is trying out the many therapies available to you: drugs, diet, surgery and more. "It's all in your head." and "You'll just have to live like this." are not acceptable answers. Discuss medications for pain and diarrhea. If your doctor is not a go-getter then get another one, or insist on the tests and treatments yourself. This point can make all the difference.

Take the pain meds: When I was first diagnosed and suffering with pain in the 8-9 out of 10 range I was rarely taking the pain medication I was prescribed. Somehow I thought that was giving in, or crossing an invisible line into being 'really' sick. My doctor, nurse, boyfriend and family all convinced me I was being a fool. Now I'm not afraid to take the pain-relievers if I need it. It's about quality of life. Be smart though: only take what you are prescribed and follow the directions carefully. Pain medication can be habit forming. Tell your doctor what you've been needing to take.

Ask about pain management: There's no reason to be suffering chronic pain without exhausting all your options. Your doctor can refer you to a Chronic Pain Specialist who can suggest more strategies than just pain medication. These include a beneficial diet, exercise, techniques like heating pads and more. You may also want to explore homoeopathic treatments like massage and aroma therapies, meditation, acupuncture/pressure, herbal remedies and more. Don't accept "live with it" as an answer. The website pain.com has a variety of information about dealing with pain and a search form for pain clinics in your area.

Eat: While eating can trigger your symptoms, avoiding food is not an option. Eat what you can as often as you can. Make maintaining your body weight a priority. You body is trying to do it's best to fight off the problems- it needs fuel to do so. Had surgery? Increase your protein intake to help heal your wounds. Talk to a dietitian to make sure you're getting the proper nutrients. Talk to your doctor about the possible need for supplements. During the times when you're feeling well, cook in bulk. You can cook a dozen pork chops or chicken breasts and freeze them after cooking; then take them out as needed, add some water and microwave. A healthier 'frozen dinner' than the boxed kind- and cheaper!

Keep a symptom journal: Buy a notebook and each day write down exactly what you eat, your symptoms, pain (intensity and location), describe your bowel movements and frequency and times. Record your stress levels and fatigue levels as these can have an effect. This journal can be vital in finding triggers for your worst symptoms. Bring it to your doctor too because this can help him/her to treat you. The value of this journal can't be underestimated- it's how I discovered that dairy was a primary trigger for me- but the symptoms didn't show up until 2 days AFTER eating dairy. I would never have clued in if I had not seen the pattern on paper.

Ask for help: Can't lift that big jug of water? Feeling too exhausted to grocery shop? Just need someone to hold your hand or make you some soup? Ask for help- you'd be surprised how quickly your friends and family step in. Someday you can return the favour.

Simplify your life: To much busyness can be exhausting and can worsen your symptoms. Know what is important and what isn't. Each day try to tackle the most important of tasks and don't stress about the rest. If the garden doesn't get weeded, or the Halloween decorations stay up a little longer, it is not the end of the world.

Take lots of me time: You may be a parent. Or a business person. Or a member of a team or club or other group. Don't let your obligations stop you from having a lot of down time. Just read a book or watch some TV. Take an extra nap. Fatigue and stress can amplify your Crohn's symptoms- so make sure you unwind- often. Learn to say no.

Get enough sleep: Your body is fighting a war, and you need sleep. Fatigue can amplify your symptoms and make you miserable. Make sure you're going to bed early enough- trust me... that TV show is not more important than your sleep. Make this a priority. It will improve your ability to function during your waking hours.

Buy a hot water bottle or heating pad: Warmth on your abdomen can soothe pain and discomfort. The rubber water bottles you fill from the tap are my personal favourite. They can relax muscles, calm your digestive system and help you fall asleep. A cheap, versatile tool. A warm bath can help too.

Make an ERPK: An Emergency Roadside Potty Kit. This tip was provided by Jenni at: Jenni's Guts. Keep a pail, some plastic bags, toilet paper and extra underwear in your car- it may not be a pleasant thought, but better safe than sorry.

Keep moving: Try to do what little exercise you can. Go for a short walk down the street or just around your room. Stretch gently. Keeping your body healthy overall will help speed your recovery time from surgeries and help your body fight infection. Our bodies were built to move so even if your digestive system is out of whack- at least the rest of your body can be in good shape. Take it easy and only do what you can physically handle. Check with your doctor before doing strenuous exercise.

Buy some comfortable clothes: Before I had Crohn's the only pants I owned were jeans, PJs and dress pants. That didn't give me very good options for the times I was in the hospital or recovering from surgery. Buying some soft, loose, comfortable athletic pants and some soft long sleeve shirts meant that at least my skin was feeling good, and I didn't look terrible either. Trust me- you deserve this. What other people think is irrelevant.

Buy the expensive toilet paper: Do not skimp. Get the ultra soft. Seriously, you deserve it. Oh, and a dab of petroleum jelly (Vasciline) used externally can help with rawness.

Discuss your Crohn's with your significant other: Pain, drug side effects, bathroom trips and more can all put a damper on intimacy. Make sure your partner is aware of your fears, concerns and self consciousness- so that he or she knows it's not their fault you feel less than eager. Hopefully together you can work through it and handle any bumps along the way.

Know where the washrooms are: Most Crohn's sufferers do this by instinct. Mentally map out the locations of washrooms when you go to a new place. Avoid places that have no washroom facilities, and bring some anti-diarrhea medication with you at all times.

Keep a couple personal travel wipes with you: You can often find these hygienic wipes marketed to women, but guys- trust me you'll love 'em too. It's nice to feel fresh when needed, especially before some impromptu intimacy.

Keep your medical information in your wallet: Write down your Crohn's diagnosis, current medications, recent surgeries, doctor and emergency contact numbers along with any allergies, and keep it in your wallet. You never know when it may be needed.

Keep your medical records organized: File the drug information printouts you get from the pharmacy. Write notes after each doctor visit and record everything they told you. Keep a little diary of your treatments, tests and symptoms. Write down all your doctor and drug information and a list of questions for your next doctor visit. Having all this information at hand can be so important- it's easy to forget what each doctor tells you- but having it written down can give you peace of mind.

When you are first diagnosed and in the middle of a painful flareup, it's easy to start asking "why is my body doing this to me?", and to start feeling like you're at war with yourself. Don't get trapped into this outlook. You body is your vehicle for your life and it's the only one you've got. It's trying it's best to fight off the problem, but just can't do it. Take care of your body as well as you can- if you smoke, get some help to quit. If you drink, cut back or stop completely. Get what little exercise you can manage, and eat healthy foods that don't trigger your symptoms.

Learn to listen to what your body is telling you. We get constant signals from our bodies telling us when we are thirsty, hungry, tired or sore. Telling us when certain foods disagree with us or when we feel the urge to get up and get moving. Our bodies tell us when they are full, and when they are hurting. Somehow, society has created a trend where we ignore what our bodies are telling us. We keep eating when we're full, we stay up when we're tired. You know what I'm talking about. Learn to pay attention to your body's signals, feelings and appearance; so you can know what's normal for you, so you can recognize symptoms earlier.

Our digestive systems might be having a rough time- but don't forget that the rest of your body needs to be taken care of too. In addition to treating your body right... don't forget to spoil yourself once in a while. Maybe that means a nice long bath or an extra nap. Or maybe a manicure or a massage. Whatever you're going through, don't let it become a battle with your body which can lead to a slippery slope of self-loathing. Remember that it's not all bad and that with careful attention to your physical well-being, your Crohn's can be managed and you can live a full life.

Do you have other tips to add to this list? Feel free to comment or send me your own tips. Stay tuned for the next segment in this series.

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You may only copy, share and distribute this work under these terms.

Question: How do you count visitors to your blog?

2008-11-02T10:30:00.001-05:00

Do any other bloggers out there know if there's a way to view how many visits you get to your blog? An add-on or setting or something? Just curious. Comments are a poor way to guesstimate.

Crohn's & Colitis Foundation Fundraiser!

2008-10-23T12:14:00.007-04:00

Today I am launching a fundraiser for the Crohn's & Colitis foundations of Canada and America. I have created a web page all about it, and I'm hoping to meet a target of $3,000. So, all you readers and sufferers out there, if you were thinking of donating... or maybe you just have some early Christmas giving spirit bubbling up... please join my little group fundraising effort. It is all through the secure donation pages on the CCF websites- so no worries, the money will not be going to me, some anonymous blogger! Thanks so much! Bloggers Unite!

http://www.brightsky.org/fundraiser-ccf.php

Crohn's Tips - Part 1: Introduction

2008-10-20T16:53:00.022-04:00

Contents
»Crohn's Tips Part 1: Introduction
Part 2: Physical
Part 3: Intellectual
Part 4: Emotional
Part 5: Spiritual
Appendix: Crohn's Tips: Food

Download the latest edition of the full guide as a PDF: http://www.brightsky.org/crohns-tips-guide.php

I've been living with Crohn's for many years, but only recently received an official diagnosis. When that happened, the first thing I did was try and hunt down some books which would provide helpful advice for dealing with Crohn's disease. So far I've found several books with medical information including treatments, as well as a few recipe books. But I haven't found much information on dealing with the day-to-day living with Crohn's that so many of us are facing. So, I thought I would share some of the things I've learned so far, here on my blog.

Knowing Yourself

It seems to me, that the first step to helping yourself, is to know yourself. Really know. That means recognizing your positive attributes and your negative ones. It means seeing how you live your life- what's important to you, and what is maybe being neglected. From what I've seen in myself and other people, including what I've read... there tends to be 4 main categories under which our various activities can be grouped. These are the often mentioned: physical, intellectual, emotional and spiritual. I've noticed that each person gives more or less attention and focus to certian groups over others. The great thing is that this is what makes us all unique- none of these groups are better than the others.

For example, my brother is definitely physically focused. He's a personal trainer and the condition of his body is very important to him. He enjoys exercise, is very careful about what he puts in his body and he always dresses very well. He loves to learn about nutrition, fitness and health. He's very knowledgeable about these topics and his career as a personal trainer is perfect for him. This area is what makes him happy.

On the other hand, I definitely put my intellectual side first. I read a lot and love to learn. I'm drawn toward activities that are interesting or informative. I tend to fill my spare time with activities that are mentally stimulating or interesting: like reading, and various projects. My most neglected side is physical. While I'm thin... I consider myself to be a bit out of shape - no endurance at all. Every time I try to start a new workout plan, I lose interest.

I imagine people live their lives with their various focuses in a sort of diamond shape. At the top is your primary focus, at the bottom is the least one and the two others are somewhat even around the middle. Or maybe one is higher than the other. Mine looks kind of like this:

This diagram also gives some points that fall under each category to give you more of an idea of how I imagine the categories are split up. Your diamond might be a totally different shape- you might have two primary focuses. It doesn't even have to look like a diamond.

The point of all this... if you're still with me... is to make sure that you are giving all four areas of your life some attention. For example, I almost always neglect my physical side, and my emotional side sometimes gets short changed. For example when I get so caught up in my own projects and busyness that I haven't seen my friends in a while. What I'm trying to say is that while various areas of your life may be more important to you, and may receive most of your attention... you must take care of all these aspects of yourself to be happy and healthy. Crohn's disease, or any chronic illness can affect all these areas of our lives, and we can sometimes become so focused on our disease, that the areas of our lives that were already at the bottom of the totem pole are neglected even more.

While my recent battles with Crohn's have brought me closer to my friends and loved ones, giving my emotional side a new increase in attention, my physical side is still left out in the cold. Which is why I'm starting a very light new work out routine consisting mainly of stretches and very light exercise just to get me moving again. I'm also planning on checking in with my family doctor to get some blood work to check my nutrient levels, and to also see a dietitian soon.

At the same time, I've been very focused on my slowly healing surgical wound, and my various Prednisone induced side effects... so physical problems have really been occupying my mind. With a chronic illness, we need to be very careful to find a balance between taking care of ourselves physically, and not becoming overly obsessed or depressed about our physical troubles or difficulties. When you're in pain or running to the washroom a dozen times a day, it can be frighteningly hard to think about anything else- but the key is to do it in small steps.

My future posts in this series will contain some tips grouped under each of the 4 categories I've discussed. Thanks for reading, and in the meantime... take a moment to think about the areas of your life diamond- write it down. What's important to you? What gets neglected? What do you enjoy and what do you avoid? Where do you know you want to improve? The answers to these questions are different for each person. My next posts will have tips related to Crohn's in each category, to help you manage this disease- so that you can get past having your life on pause due to Crohn's and you can instead give at least some of your attention to the rest of your life- and finding the right balance.

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You may only copy, share and distribute this work under these terms.

Book Review: Coping With Crohn's by Sonia Glover

2008-10-14T13:08:00.002-04:00

I just finished the short book: Coping With Crohn's by Sonia Glover. I bought it hoping it would have some practical advice on dealing with the emotional aspects of my diagnosis and maybe some lifestyle tips. Unfortunately this book was not really about helping the reader cope with Crohn's. Instead it is the story of the author's struggle with Crohn's, and while it is indeed an emotional and stirring story, it is not really what I was looking for. It reads more like a big long journal entry and while it does describe the tests and doctor hoop-jumping she went through... her actual method of coping seems to consist of struggling to go to work despite horrendous pain and running herself ragged, eating foods she was told not to, and on a positive note- receiving lots of support and comfort from her family. The only real tips in the book are the importance of going to your loved ones for support when you need it (don't be afraid to ask for help), and if you fail to get a diagnosis at one doctor- keep on trying.

I don't mean to knock the book- it was a good read. However it was a bit sad, and did not have the practical advice I was craving. Honestly, I think I could write a better guide to coping with Crohn's myself, and I'm toying with the idea of writing a short e-book and giving it away for free. Let me know what you think folks.

My Crohn's Status Update for October 2008

2008-10-10T16:48:00.001-04:00

I've read posts by other Crohn's bloggers about how they are feeling and what they are going through, and they are often tales of mind boggling pain and dozens of trips to the washroom. I'm so fortunate not to be having those particular problems, but rather am dealing with other 'fun' issues, so I figured that it would be worthwhile to write about my current situation.

It's about 7 weeks since my surgery to have an abscess which formed around a perforation (fistula) in my small bowel drained. The 5.5 cm abscess was drained, I was put on antibiotics for a couple weeks (done now) and my now empty abscess hole was packed with gauze and I was discharged under the care of a home nursing agency. Thank god the government pays for this service! Over the last 7 weeks, the wound has been packed with a smaller and smaller amount of gauze, Silvercell, Iodosorb and various other cool products which fight infection and promote healing. I'm also now applying for a new product called Prisma that contains collagen. Anyway, what once was a large wound into which about 2 feet of gauze was packed... is now a 1.5 cm deep hole as narrow as a tooth pick. Needless to say, packing this narrow hole is rather painful, but it's necessary to ensure it heals from the inside out. Luckily I'm down to having a nurse come only 3 times per week. Thanks to Iodosorb which fights infection and lets me keep the same gauze in there longer. Keeping a wound warm, moist, and un-bothered is the best way to help it heal. Frequent fussing is not good. It also allows me to go in to the office to work on days I don't have a nurse (I work from home on the days a nurse does come). Thankfully I've been able to continue to work full time.

While my wound is slowly healing... it still requires me to have a good size bandage on my abdomen which collects the blood and other oozing fluids. I'm struggling with the fact that this makes me feel hugely unattractive. Sometimes it even smells like stew for some reason (no, I don't eat stew), which compounds this problem 100-fold. I'm sure my wonderful boyfriend is noticing that I've been more distant, but I find it nearly impossible to feel attractive and affectionate with a big stinky bandage on my stomach covering a sore, gauze filled wound. I don't know what I would do if I ever needed an ileostomy or those other nightmarish procedures. That is my absolute biggest fear at this point. I try to think of it as being better than suffering pain or even dying... but it's still a horrible fear.

To make matters worse, my relationship is still on the new side... so I feel horrible that I can't be my normal outgoing, upbeat, and affectionate self. Especially since he's been so supportive and positive about this whole ordeal, and seems totally ok with having a Crohn's-y girlfriend. I feel like I'm just putting my life on hold, waiting for the wound to heal so I can move on with my life, the further medical tests I need, and the treatments my doctor wants to try. It's all riding on this wound, so it's become a hated nemesis. I just wish I knew if there was still any stool present in the drainage, like there was at first. Then I could at least know that the fistula had healed. But now with the blood, the brown Iodosorb and the yellowish natural wound fluids, it's too hard to tell if there's any stool present. Maybe that's the stew smell? I don't think so however, and my nurses say it looks good and that if there is any stool, it's a minuscule amount. So I guess that's good.

Besides my wound troubles, I'm still fighting with the side effects of the Prednisone despite having been off it for a few weeks now. My hair is still falling out in alarming amounts, I've got extra acne and fuzz on my cheeks. Not cool. So if I'm feeling unattractive- you can understand why. I'm obsessively wondering when these things will go away and if they will at all. Will my hair thicken back up? Will the peach-fuzz fall out or do I have to wax it out? Etc. It's maddening.

I've also been making a few trips to the washroom each day. Mild diarrhea has returned, but nothing like that described by other Crohn's sufferers. But enough so that it makes me dread having to use the restroom at someone else's house. Luckily it's about the same as it has been for the last 7 years of my life, so I'm not too put out by it.

Luckily my pain level has been about a 1 to 3 out of 10. So that's pretty darn good. I think most of the pain is coming from the wound and not the internal Crohn's thankfully. So pain is not a very big issue for me, but tiredness is. I've always had a problem with going to bed early enough. I tend to get deep into a book or something that makes me lose track of time. So, even though my recovery requires EXTRA sleep, I'm still probably not even getting enough for a normal situation. Part of my plans for the short term is to get to bed earlier. I'm yawning way too much.

Overall I think I've been feeling pretty good physically. It's the emotional things I'm struggling with. Feeling kind of ugly, and not knowing what my future holds with this disease are particularly hard. Luckily when I get too sad about it, I can look on the Bright Side at all the things I have to be thankful for, and that helps turn my mood around. From reading other blogs I also know that it could be much, much worse... so I'm thankful it's not.

Crohn's is hard, both physically and emotionally, but when I read stories of other sufferers, I am always inspired by their courage and determination. It's partly because of that inspiration as well as from a desire to be proactive and help find a cure... that I'm going to be organizing a fundraiser shortly. It will go through the official CCFC and CCFA websites, but I'm going to collect a tally of the donations that people make. I am setting up a web page all about it, and a form people can use to tell me about their donation so it can be added to the tally. Once I have this ready, I'll post it here. So if you're planning on making a donation soon... just hold off and you can join my little group donating event! Stay tuned!

And to everyone reading my blog- thanks for visiting- and stay tough! Your comments and messages mean a lot- thanks!

Silent Sufferers

2008-10-07T17:24:00.000-04:00

I recently started reading a book: Coping With Crohn's by Sonia Glover. Her story is a tough one, and her years of suffering without a diagnosis made me think of the people around me. A shocking percent of my female friends and family members are suffering with some kind of undiagnosed 'stomach problems'. Of my four close girl friends, one besides me also has Crohn's, and two others have stomach issues, one of which has MAJOR problems. One of my male friends has a sister with issues, and my own sister in law is suffering with IBS-like symptoms of her own. It's heart breaking to see the people I care about most suffering in silence.

Most of them have been to a doctor multiple times. In some cases the test showed up clean, in other cases they refused to go for the more unpleasant tests. Reminds me of myself a few years ago. While I'm feeling fairly good, and getting the treatments I need, my friends are suffering on and off without answers. So, I've put together a list of tips and things to tell your doctor about to help get a diagnosis.

• Go for all the tests your doctor needs. They aren't so bad- even the dreaded colonoscopy is a big nothing- I was knocked out the whole time. This is so important- these tests are the only way to get a firm diagnosis.

• Keep a symptom journal. Record everything you eat, your fatigue level, stress level, pain level, bowel movements and a description of them. In all the gross detail you can manage.

• Tell your doctor about how long you've been experiencing these symptoms -to rule out short term causes like the flu or food poisoning.

• Describe any other problems you may be having even if you think they are unrelated. Examples are: skin rashes, joint pain, muscle pain, headaches, dizziness, fatigue, trouble concentrating, etc.

• Describe your pain on a level of 1 to 10. One being barely noticeable, and 10 being the worst pain you've ever experienced in your life.

• Tell the doctor about all medications and vitamins or natural remedies you are taking.

• Insist that your doctor be proactive in sending you for tests and trying treatments. Don't let the doctor send you home feeling like you are just doing this to yourself with stress, or that it's a natural part of life, or that there is no answer. Get a second or third opinion if necessary.

Suffering in silence is no way to live. Our medical system, especially in Canada is open to everyone and despite occasional wait times, the quality of care is excellent. Even if you are diagnosed with a disease like Crohn's that has no cure, there are still a large number of therapies and treatments that can greatly improve your quality of life. Don't be afraid to stand up and demand the help you deserve.

Turbulent Times

2008-09-29T20:04:00.000-04:00

The last two days I've been fighting off rising panic as I've started to develop new pain about a centimetre below my abscess drainage surgery wound. A tender area that is very sensitive if I touch it. I'm also convinced I can see some slight swelling, but if I think back, I can't be sure it wasn't always there. What scares me is that it feels just like it did back when my first abscess was forming. Am I getting a second abscess? A new fistula, or complications with my current one (which continues to leak a bit)? Is the current fistula's leakage taking a new path way in my abdomen and forming a new abscess? Or, am I making a mountain out of nothing- it could just be tenderness from the rather vigorous packing on behalf of my nurse the last two days- trying to prevent the wound from closing quite yet. I don't know! I can feel the panic rising as I contemplate yet another abscess and what that would mean. Likely my doctors would recommend that my naughty section of ileum needs to be removed. Geez- I start to choke up just thinking about that.

Add on top of that, the fact that I'm suffering from some mild Prednisone withdrawal symptoms. Fatigue, sore muscles and joints, nausea. I feel 'off' the last few days. Just great.

My plan is to wait for my nurse to come today, which should be any minute now, and consult with her on what I should do. Call my GI and try to get an appointment in the next few days? Go back to the hospital ER? Do nothing and monitor my temperature and heart rate (signs from my first abscess)? I don't know!

I called one of my best friends last night in the middle of a full blown panic melt down, and she calmed me down and said there's no use getting worked up over what could be nothing. She advised that I gather as much info as possible and consult with those in the know. So I think talking to my nurse and GI will be the best ideas. I just need to avoid freaking out till then. In the end, it is what it is. Freaking out won't change my condition- I just need to meet each challenge head on, and deal with things as they come. Crohn's sucks, but letting it turn me into a blubbering basket case will mean the terrorists have won. *cough* I mean, the disease will have won. *small attempt at a grin*

[LATER]

Well, my nurse advises me to monitor my pain and temperature and if either gets worse, to call my doc for an appointment. It also occured to me that this might be my 'regular' Crohn's disease flare up pain returning now that the Prednisone is leaving my system. Either way, I think a trip to the GI sooner rather than later to discuss my options is in order.

By the way folks, there's another witty Crohn's blog in town: http://jennisguts.blogspot.com/. Check it out. What is it about us Crohn's girls that drives us to write nutty posts about our bowels for the world to read? Haha. Hopefully though, our blogging is helping someone in some small way.

I'm Prednisone Freeeee!!!!

2008-09-25T09:43:00.002-04:00

Today marks the first day that I don't have to take any Prednisone. Yay! I'm so glad to be off of this, and I'm really hoping some of the more... cosmetic... side effects reverse themselves soon! I also hope my symptoms don't get worse and that the 5-ASA is enough to keep things in check. *crossing my fingers*

This Ain't Going To Be Easy

2008-09-18T16:42:00.009-04:00

I'm feeling a little blue today. My old friend, diarrhea has returned. Just a bit. Now that I'm down to only 5mg of Prednisone per day. I guess it was the Prednisone all along that was keeping my guts calm. It was easy to tell myself that things were getting better. That I don't need surgery. That a temporary dose of Prednisone and the 5-ASA I'm now on would be enough. To dream of being able to re-introduce foods. A part of me still hopes that I have a 'mild' case of Crohn's. Maybe I do, maybe I don't. It's "Fistulizing Crohn's" according to my doctor appointment yesterday. Hence my lovely perforation leading to abscess leading to surgery a month ago to drain said abscess. Anyway, those are some scary words, and the sneaky return of big D combined with a general malaise about wanting my life back has me feeling a little down in the dumps. I know what I'll do... I'll go vacuum my apartment and take solace in the fact that I actually feel well enough to vacuum. That's something at least.

Actually, I was feeling agitated about all this enough last night that I went to the weekly meditation group meeting that I haven't been to in almost a year. It was nice to be surrounded by calm, content people. The woman who gave the initial talk also had a good point that was relevant to my current issues. She discussed the need to be objective when viewing our thoughts and emotions. To be able to SEE ourselves feeling bad, observe that, realize that "Hey, I'm really down today", accept that, let ourselves be down, but then let the emotion or negative thoughts pass. Don't cling to them. Don't hold on and throw yourself a pity party. So yeah, I'm blue today.... but tomorrow I'll be 'bright' yet again. In fact, I'm feeling a little sunnier already. Where's that vacuum?

NYTimes Special on Crohn's

2008-09-18T16:42:00.006-04:00

I have to repeat the links to this information that I found on Alicia's blog. The NYTimes has a great special on Crohn's Disease. There is also an NYTimes wellness blog section on Crohn's too. Check this stuff out. It helped me feel not so alone. Especially check out the voice diaries of people living with Crohn's.

Thank A Nurse

2008-09-16T17:03:00.000-04:00

For me, it was one of those occupations where I thought that I knew what it involved. Sure, nurses help patients and doctors. Simple. Or so I thought. If there's one thing I've learned in my two stays at the hospital, and my current use of home-care services… it's that nurses are awesome. They are heroes. The are the REAL caretakers of patients. If a doctor is the engineer of a skyscraper, nurses are the builders who get their hands dirty and do the real work.

For both of my stays I spent some time in the ER with the ER nurses, and then I was admitted and was under the care of the nurses assigned to my floor and wing. Two shifts- a night nurse and a day nurse. Then there were the nurses who came in for special reasons, like taking blood samples, and the nurses and technicians at the various test labs, like ultrasound, x-ray, etc.

Entirely across the board I was blown away with how hard these men and women work. How kind and patient they are. Being in a hospital is typically unpleasant, but they made it just a little more bearable. Nurses have to do the real dirty work. From bathing the woman in the bed next to me, and helping her use the toilet. To monitoring my bathroom outputs, and answering my endless questions about my IVs, drugs, bandages and more. Doctors may get all the glory (and they have my thanks as well) for pronouncing the diagnosis and prescribing the treatments, but it's the nurses who do the actual CARING for the patient.

My home-care nurses (one main nurse and a few who occasionally sub for her when it's her weekend) are equally kind. They are careful and precise, friendly and knowledgeable. In fact, I've grown quite fond of my primary home-care nurse.

I can't say thank-you enough. In fact, I'm always profuse in my thank-yous. I say please. I ask nicely. I say that I appreciate their help. I give compliments and ask about whether they enjoy their jobs. This in contrast to one woman in the bed next to mine during one of my stays who was outright rude and demanding. I was even told by one nurse who was wheeling me down the hall for yet another test, that she noticed that one nurse had written in my chart: “pleasant”. How sad that a pleasant patient is rare enough that the nurses make note of it.

Being sick sucks. Nothing will change that. But I ask all my readers to try and give a smile and a thank-you to the hard working nurses who are trying to help. I now know how much they deserve our appreciation, and I have a new found respect for the nursing profession. And to all the nurses who have taken care of me, what more can I say, but Thank You.

On Medication and Not Being a Hero

2008-09-13T11:46:00.008-04:00

A close friend of mine was diagnosed with Crohn's Disease several years ago. She tells me that back then they didn't have nearly as many drug options for treating Crohn's. I think it's wonderful that new treatments are being developed, and that we have options available to us.

My current regimen includes:

Prednisone: a corticosteroid which reduces inflammation. It has all kinds of nasty side effects and I'm happy to be down to 10mg per day from my initial 4 weeks of 40mg per day. This is commonly the first thing that people are prescribed because it's powerful and effective.

5-ASA (5-Aminosalicylic): An anti-inflammatory which targets the intestines. A common treatment for Crohn's which has much fewer side effects. 1500mg twice per day.

Iron (Ferrous Gluconate): My iron levels were low as of my last blood test. They must have been low for my whole life because I now feel more alert and less sensitive to the cold than I have in... as long as I can remember. 300mg twice per day.

Multi-vitamin with Ester-C: Important to make sure I'm getting proper nutrition. The Ester-C is a non-acidic vitamin C which doesn't irritate my stomach. One per day.

Calcium and Vitamin D: 1000mg per day. Prednisone leeches calcium out of your body so this is important. Plus I don't eat dairy, though I do drink fortified rice milk.

Vitamin B12: Makes me feel much more energetic. My inflamed section of bowel is where this is normally absorbed. So I want to make sure I'm getting enough.

Percocet (Oxycodone): As needed for pain. This leads me into the second part of this post... on not being a hero.

Not Being A Hero

There's one area in your life where you really shouldn't try to be a hero, and that's pain management. To understand where I'm coming from, let me explain that I was raised by parents who look upon any kind of medication as a last resort. I can take a single regular strength Tylenol and feel relief from a headache- that's how sensitive I am to it because I never take it. So, when I was prescribed Oxycodone for the pain of my Crohn's flare up, and later my surgery to drain an abscess... I was very reluctant to take it. My first experience with the pain meds they gave me - Tylenol 3s was that it caused constipation and just made me feel worse. And for some reason, in my head I felt that if I was taking medication for pain, somehow I was losing to the Crohn's or it was worse than it was. Like there was an invisible line that I was crossing by taking a pain pill.

Boy was I set straight. My boyfriend, family and friends all called me out on my nonsense. Even my home-care nurse looked at me dumbfounded when I told her, only a few days after my surgery, that I had only taken half of a pill in the last 24 hours. She looked at me all maternally and said "Dear, you just had surgery, take the pills so you can feel a little bit normal.".

So, I relented and when my pain was up, I took a pill and while it made me sing random songs... over all it had few side effects, and made me feel much better. Today, I'm pain pill free b/c my pain level is thankfully quite low.

So, my fellow sufferers, if you're at all like me- cut it out, and take the pain pill. You deserve to have whatever relief you can get.

Don't forget- only take medications as directed by your doctor!

I Forgot About Sleep

2008-09-12T17:06:00.006-04:00

It's been three weeks since the surgery to drain my abscess. Luckily my wound seems to be healing slowly but nicely (I'm sure I'm jinxing myself by typing that... cue the gurgling). Today however, I was struck by a real feeling of fatigue. I'm yawning. I'm stretching. I'm unfocused. At first I was like, hey, what's going on!?? However, even an amateur sleuth could deduce a whole load of reasons for this:

• I've been working from home, but maintaining full time hours at the computer.
• My new Xbox makes it very easy to stay up half an hour later. Ok, more like an hour.
• I've had about 2 months of Prednisone induced insomnia.
• Now that the Prednisone is down to 10mg per day, I'm not getting the artificial energy that comes from it.
• I haven't been napping or sleeping any extra for the last 3 weeks to aid my body's recovery.

So, yeah, it's my own fault. A smart person would be getting some extra sleep to help her body recover. Sleep more silly girl! Ok, I am now vowing to start getting some more sleep. No one will make fun of me for going to bed at 9:30pm instead of 10:30pm right? Right!

Why Bright Side?

2008-09-11T18:13:00.004-04:00

Readers might ask, what's the bright side of Crohn's? A strange name for a blog, I'm sure, and if anyone knows the real answer, I'm all ears. No... it's not about some wry attempt at making light of Crohn's -- "The weight-loss program that works!" ba dum ching! -- no, it's about the general philosophy I try to live by. I always try to look for the positives in my life. Count my blessings. It sounds trite, but it works.

Ok, if you, dear reader are suffering from Crohn's, some other illness, or just dealing with one of the many possible sources of suffering in our lives, I have a project for you. Go grab a piece of paper and a pen. Yes, real paper, don't use your computer- having a physical result helps. Now, at the top write a title like "My Blessings", or "Good Things In My Life". Next, write the numbers 1 to 20 down the margin. Now, I want you to fill that list with all the bright sides in your life. Your blessings. I know you have at least 20. If you fill 20, add 5 more. Keep doing that till you just can't rack your brain for more. Fold up the list and carry it with you, it might take a few days to complete it, and it will change with time. The items can be big and serious, or small and light-hearted. To help you out, here are a few random items from my list of over 50:

- Parents that love and support me.
- An amazing super-hero, dragon-slaying boyfriend.
- The most awesome group of friends.
- A close relationship with my siblings.
- Finally getting a diagnosis, and starting treatment.
- A country that is free, and has free health care.
- My intelligence and love of learning.
- My new Xbox360. Who needs mobility to have fun! :)
- Having a great job, and being able to work from home as needed.

You get the idea. Now you can jazz up your list with some coloured pens, and keep it with you. When things get bad, and the weight of your illness feels like it's tainting your soul... whip out that list, and remind yourself that it's not ALL bad. In fact, there's a lot to be thankful for.

Now, I'm not saying to just count your blessings and it will ease your suffering; there's nothing I hate more than the "Don't worry, be happy" advice (which I get from a surprising number of people). But I do believe that we sometimes lose ourselves mentally in our anguishes, and we can add to the suffering of our illness. Yes, my hair seems to be thinning, but fretting about it is making me into a basket case. There are so many positive things in my life to think about.

I hope this helps at least one person. Then I could count that as a Bright Side of this blog!

Mission: Gain Weight

2008-09-10T16:15:00.005-04:00

My current mission, which is proving to be a challenge is to gain weight back to my normal old 128 pounds. I'm currently hovering around 116/117 pounds. I've been eating 3 big meals per day and tons of snacks. But I'm fighting against a freakishly high metabolism that runs in my family. Who knew that blessing would end up being a curse!

I'm packing on the carbs - bread, pasta and rice to help gain weight, and eating lots of protein to help aid in my wound healing process. But it's just not cutting it. I'm almost wondering what more I can do. Plus trying to eat at least some non-fiber rich vegetables each day. Luckily eating the foods I am currently eating does not cause me any discomfort, but it is hard to eat when stool is leaking out of a hole in your abdomen. Like some cartoon character that gets stabbed with a sword then drinks some water and it squirts out the hole. Ok, not exactly like that, but you get the idea. It's horrifying. Luckily that has improved greatly in the last week, so I'm trying to eat even more. But really, when your diet is limited to rather bland foods, it's quite challenging. I haven't put on any weight in 2 weeks. Not good. I'm going to have to ratchet it up a notch. Time to boil even more pasta... sure wish I could stomach fatty foods- I'd love something deep fried right about now. No such luck.

The Story So Far

2008-09-10T13:03:00.002-04:00

This is my first post here on my new Crohn's blog, and let me preface it by saying that I'm creating this blog because I was inspired by another blog I came across: I'd Like to Buy a Bowel. Alicia's blog really cracked me up and it was inspiring to read how she can keep her sense of humour through all of the 'crap' that Crohn's throws at you. It made me feel like I wasn't so alone... to read someone else's honest story. So I figured if there was a chance that my story might help someone in a similar way, it's worth doing... that and the fact that I find writing to be highly therapeutic. As evidenced by my endless journals.

Anyway, my Crohn's saga (cue Star Wars music) began about two months ago, but prior to that I suffered for about 7 years under the un-diagnosis of IBS (Irritable Bowel Syndrome). Sometime in mid July I got what I thought was a flu. Fever, vomiting, felt horrible. I was barely keeping any food down, and watching my fever hit alarming new highs when I discovered a pain in my lower right abdomen, and a strange bump. Worried, I went into the hospital where I stayed for a few days and received all manner of tests including, the key diagnostic test- a colonoscopy (which by the way, wasn't so bad, I was unconscious the whole time). The on call GI doctor, who did the test, and asked me a bunch of questions about my 'IBS' history, informed me that I had Crohn's in a section of my small intestine. He couldn't get into it with the colonoscopy because it was so inflamed. He prescribed me 40mg of Prednisone once per day for 4 weeks, tapering off by 5 mg per week after that. The antibiotics given me at the hospital cured my fever, so they sent me home.

A few days later I was back in the hospital with sever pains... but I was given a new pain medication - Percocet - and told to give the Prednisone time, then sent home. Over the next couple weeks I started to feel slowly better and better. But by the middle of August the pain was getting quite bad, and I stared to notice a visible bump in my abdomen where the pain was. And I could feel something round and swollen in there. Then my fever started to rise and I noticed my heart rate was up. So it was back into the hospital for me.

Turns out that a perforation in my inflamed section of small bowel formed that when to the abdominal wall (skin). This is called a fistula. My body formed an abscess around it and that was the round ball. A big 'ole ball of pus. Lovely. My body was trying to wall off the hole and protect the rest of my body. I was told that it was about 5.5 cm in diameter and had to be drained. I was in agony.

An attempt to drain it via needle and ultrasound was a failure, it was infected and too thick to drain that way. A sample was sent for testing, and I was given lots more antibiotics, and told I would need surgery to drain it! My first surgery ever!

With the support of my wonderful boyfriend and my family... I went in for surgery and it was a pretty interesting experience. I was totally knocked out and woke up feeling sore and disorientated and my throat sore from the air tube. The next day I was given more anti-biotics and informed that I now had a bunch of gauze stuffed in a hole in my abdomen. This is to keep it open so that it heals from the inside out. I was sent home and they hooked me up with a home-care nursing service that now comes once a day to change the gauze packing, and my bandage.

My first day home was a big shock when I discovered (disclaimer- gross stuff coming up in this paragraph!) that there was not only blood, but stool coming out of my wound and leaking out the bandage. A call to the surgeon confirmed that this was normal, as the fistula was still there and it hard to heal those. The hope is that the leakage would get better and better. Gee- nice of them to warn me about this ahead of time. It was quite a shock, and really put a damper on my appetite. Not good, since I've lost 13 pounds, and need to gain it back.

It has now been about 3 weeks since the surgery. I was prescribed a new anti-inflammatory now that the Prednisone is almost tapered off (down to 10 mg this week!), called 5-ASA. I'm feeling pretty damn good. The pain is low, I'm eating. The bowels are moving regularly and solidly, and the wound appears to be healing and the leakage is getting less.

On the down side, it appears that the Prednisone is having horrifying side effects. Early on, when I was at the 40mg I was getting heart flutters and insomnia. Now those are gone but instead I've noticed my hair is thinning. It's frightening, and makes me even more sure that Prednisone is not as viable an option to me in the future. I'm just praying that the hair loss stops once the Prednisone is totally done, and that it comes back!! *cry*

Yesterday I had a different nurse fill in for my regular nurse (who I'm getting rather fond of and attached to- she so nice!). This new nurse is a wound care specialist and she said that gauze is like, so old school, and that she was going to pack me with a new product that contains silver in it and fights infection and encourages healing much better. It's called Silvercel. She said that with this stuff I'll only need a nurse every other day. She also said in 3 weeks I should have seen faster healing- so this will help. Today.... more than 24 hours later, I don't see the shadow of blood through the bandage like I have every other day, and didn't have to change the outer dressing myself. So maybe it has helped reduce the leakage. That would be great! I'm curious to see it when the nurse comes tomorrow.

So... that's my situation. My GI doc wants to send me for more tests once this wound has healed. And the 5-ASA is my medium-term treatment for now. It turns out I have some hardening of that section of bowel, so it may have to come out within a year or two. That's very scary! Thankfully, my boyfriend, family, and friends are all being so amazingly supportive. I couldn't do this without them!

Stay tuned... the saga continues...