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