I have always been diagnosed with UC. I've had an endoscopy and an MRE which have shown no inflammation above the colon. A few weeks ago, I had Step 1 of 3 for a j pouch. Unfortunately, the biopsy showed Crohn's instead of UC. I met with my surgeon and for now all future surgeries are postponed. He said that all of my inflammation indeed was only in the colon and rectum and my small intestine looked great. He straight up called my colon ugly though and had to do an extra incision to get it out because it was so inflammed. It would have definitely needed to go either way. So, with the biopsy results, there is potential that inflammation could pop up somewhere else. He has done successful j pouches in the past with patients like me that have never had any inflammation outside of the colon, but it would be a higher risk. So, I could either go through with the j pouch at a higher risk or commit to the end ileostomy that I have now.
So far, the ileostomy has been fantastic. All of my symptoms are gone. I have had no leaks or irritation. I only have to change my appliance once a week. I empty my bag 4-5 times a day. It is just so much better than what I have been dealing with for years. I have had trouble sleeping though, but I think my subconscious is just very confused about not having to wake up and rush to the toilet every couple of hours and just keeps waking me up thinking I'm going to have an accident. Hopefully that will get better with time. I guess my only reservations would be about having to carry around extra supplies everywhere, the general annoyance of having something glued to your belly 24/7, and some self-consciousness. I feel like with time I could overcome all of those things though. I'm planning on keeping my ileostomy for some months before making a final decision to see how the negatives would really affect me. I was also hoping to start having children with my husband in the next few years, so that's an important consideration.
This is probably a very personal decision, but I would be interested in what you all would do in my position or if anyone has been in this position before. Do you think a j pouch is worth the extra risk? Anything I'm not considering?