Badplumbing,
All my scopes and symptoms over the years showed UC, as well as the promethius blood test. I had times where the scopes showed the ilieum was fine (most often) and a few times where there was inflammation.
What concerned me was the last colectomy path that showed an area in the transverse that was disease free and maybe one other area also. The scope prior to my booking surgery showed ileitis and I questioned my surgeon on this and he did not seem concerned (same thing backwash ileitus). The final surgery showed no inflammation in the ileim and again a UC dianosis. I have however, had pouchitis pretty much since takedown, although it is not severe.
My biggest concerns since my takedown are the anal issues (last two centimeters of anal anal). I have and the constant inflammation and ulceration in the cuff and ATZ which I never had with UC. The pain from this is worse than the pain I had with UC as I never had really bad anal involvement when I had my colon. I have been recommended for pouch advancement surgery, but I am trying to fight this as best as I can, but some days the pain is unbearable.
There is no guarantee that my case will in any way be anything that you would have to deal with. I will tell you if I knew I was going to have all these complications, in hindsight I would have opted for the ostomy at the start. I am at a point now where I am very fearful of additional surgery due to my experience so that is why I am not running to the OR despite the issues I have been dealing with. Also,another part of me wants to believe this will eventually improve, but after two years I am sure it is not likely.