Scott F posted:
Some folks have had smoldering, untreated pouchitis for many years.
I should note that I have had “smoldering” Pouchitis WITH treatment for around 25 years. Remicade and rotating antibiotics have kept me in this state and one can have a good quality of life in this state so long as the inflammation is reasonably kept in check.
My most recent scope done on May 22, 2019 showed what has been a recurring pattern of inflammation in 3 areas- the rectal cuff, the Pouch inlet and the neoterminal ileum. I think a pattern of inflammation at the Pouch inlet is fairly common due to backsplash stool as a result of there being no backsplash valve at the inlet, as there is in the colon. My actual J Pouch interior looks really good- it’s just the above 3 hot zones that have inflammation that is mild and scattered.
My doctor noted the strength of my anal sphincter. He said a lot of people have leakage issues as they get older with pouches but that’s not happened to me so far. It got 20 years of great exercise with ulcerative colitis and I believed I really toned it up during that period, having to constantly stave off the wild urge to defecate.