I am new to this page and wish I had known of this support years ago. My original surgery was 2002, a result of an over 30 year battle with UC. I am 60 and have a family history of colon cancer. I had a less than successful original surgery where I was released from the hospital with a huge abscess in my gut.
I had a total of 13 surgeries in the following 2 years and have been dealing with Chronic Pouchitus for the last 7 years. I have been treated by some outstanding doctors and surgeons as I have access to very good university hospitals. I agree the the treatment for Pouchitis is whatever works best for the individual. I have Neuropathy as a result of prolonged use if Flagyl.
My fear is that I will have to have Ostomy unless I find something that works for me. I have been told my original surgeon left me with a "Short Gut" and I would have to have Ostomy placed in same area. Problem with that is I was unable to process my food and had to be nourished with TPN.
I appreciate reading everyone's stories in hope I will be able find a treatment that work for me. Thank you for sharing.