Well after 3+ years of having my BCIR, and what I initially thought was severe pouchitis, apparently turned out to be Crohn's. I'm really bummed. My valve has been leaking all over the place. My symptoms are severe cramping, very frequent intubation (12-15 per day), blood in output, some nausea.
Went for flex scope and my gastro said it's Crohn's. Biopsies suggest pouchitis, but he said it's Crohn's. There's ulceration at the valve entrance, which causes the leakage. I have to go see Dr. Rehnke in a week for surgery.
Has as anyone been diagnosed with Crohn's post pouch creation? I don't want to ever have to go back to an osteomy bag. I want to keep my BCIR.