I hope this is the appropriate place to address these questions- I am two weeks post takedown and although I will give this experience a few months, I am already considering going back to an ileostomy.
The surgeon I selected is very experienced (used to be a surgeon at Cleveland Clinic, and sold the J pouch fairly hard as being "just like before the colitis" with slightly more BMs and didn't really explain what issues might go along with it.
I had a two step procedure, with a loop ileostomy for three months until two weeks ago. I had difficulty adjusting to the ileostomy due to its high output, fear of leaks, and nighttime emptying. At first I felt like an alien, but since that time it became kind of normal to me. Due to the positioning of the stoma, right around my belt line, I also could not zip up my pants, and had to constantly loosen my pants to allow stool to pass down into the bag. It felt very awkward. However, I felt 100% better than the colitis, never spent much time in the bathroom anymore aside from changes (which took me 20-30 minutes every 4 days), and could live my life, albeit with the constant anxiety of touching the bag to see how full it was all the time. I assume the higher output is because it was a loop ileo and not an end ileo.
After getting the takedown procedure done, it almost feels like I have ulcerative colitis again, and I am wondering if it might not be better long-term to remove the pouch and stick with an end ileostomy. I am only going to the bathroom 4-7 times/day, but the experience so far is very unpleasant. I wanted to check with others for advice to see, in your experiences how much of my problems might subside, and which are permanent aspects of J pouch life. My thought on an end ileostomy is that it would have lower output than my loop ileostomy (Maybe emptying 4-6 times daily, whereas with my loop I was typically emptying 10-15 times daily and several times at night), but also eliminate all of the pain, burning and pressure sensations I am having with the J pouch, assuming these are permanent.
One of the main issues I am having is just the sensation of the pouch- it almost feels like I have the ileostomy bag wedged up my butt instead of on my hip, and there are uncomfortable feelings of rectal pressure, especially when sitting. Whenever I sit down, as soon as I stand up, there is rectal pressure and it feels like I may have to have a BM. I am a dentist, and have to sit all day, so the uncomfortable sensations from the J pouch, if permanent, are a dealbreaker for me.
When I do have to have a BM, it is like an endless stream of flaming stool, despite my using generous amounts of desitin or calmoseptin. Are J pouch bowel movements always burning like this? Do I have to live my life taking constant baths and lubing my bottom with creams? I rather liked not having to have the pains and sensations associated with bowel movements when I had the ileostomy, and right now, it feels like I am back to a milder form of ulcerative colitis but with flaming excrement. The pouch also is harder to produce stool with, and I already have given myself a hemorrhoid from straining. It almost feels like someone just moved the ileostomy to my rectum and exposed my skin to its burning contents.
At night, I get woken up several times each night with rectal pressure and gas pains. I get up, sit on the toilet, and nothing comes out. Back to bed, twenty minutes later, same idea. Under the surgeons' direction I have been taking metamucil which has not improved the condition. I had surgery to get out of the bathroom and feel healthy, but the J pouch feels anything but normal to me. I hated the ileostomy when I had it, but now that I realize a 'normal life' as it was before UC is not possible, I think it may be the lesser of the two evils.
Does anyone know if these issues subside over time? Alternatively, is it crazy of me to consider going back to an ileostomy? I am scared as heck of more surgery, but I also want to feel well and get on with my life in a comfortable manner. It is possible that I go back to an end ileo and never sleep a full night due to output, or have other complications as a result.
