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Reply to "Pouchitis or cuffitis?"

I can speak to this topic, but I don't want anyone posting on this topic concerned that my experience will become their situation after takedown. Everyone is different and I am just passing along my experience.

I had diversionary pouchitis prior to takedown and had all the symptoms you are describing vstRN. My surgeon felt it would correct itself after I started using my pouch. It has been a year since takedown and I just had a scope last week and I still have pouchitis and cuffitis.

I was on antibiotics for over a year and just stopped taking them. I have also struggled with cuffitis since my takedown on and off and I am currently being treated for that with rectal meds.

I was bummed at my recent scope report, but as Jan has indicated, along with both my surgeon and GI, there is often some level of inflammation in everyone's pouch. My GI is treating based upon symptoms and thankfully, my pouch seems to function pretty well even with chronic pouchitis.

The cuffitis is bothersome and usually after a few weeks on rectal meds it improves, however it is likely I will always have some level of cuffitis (as will other pouchers) that can be asymptomatic. My cuffitis was recently asymptomatic until the GI scoped me and did biopsies, hence irritated my cuff.

As a result of my UC history and my pouchitis/cuffitis history, my GI has recommended I have annual surveillance with biopsies....something I was not thrilled about as I really thought most of my troubles would be over with by having this surgery. In my case it seems I have had more issues with my jpouch than I had with 23 years of chronic UC. This is not the norm for many jpouchers.

I would not worry about chronic pouchitis as it may never happen to you and even if it does, it can usually be successfully treated. Although I would prefer not to be on long term antibiotics, if I need them to retain my pouch, I will take them again, even if needed on a long term basis.
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