Give Me The Knife

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

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

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

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

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?

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:

1. surgery: a resection of 10-15cm of my terminal ileum (small intestine).
2. powerful drugs: my GI suggests Remicade (Infliximab).
3. 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.

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.