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Reply to "what meds work best?"

I used antibiotics (many) for over 20 years to treat pouchitis, mostly successfully as far as dialing back symptoms. Entocort also helped when I got really bad flares. What was observed over the course of 20 years was that while the antibiotics consistently dialed back the symptoms, I was gradually losing the battle against inflammation. And you can't think everything is fine if antibiotics dial back your symptoms and the inflammation isn't being controlled. Because what will happen eventually is you will end up with a stricture, or a fistula or some other issue. It usually happens at the J Pouch inlet because there is no backsplash valve and fecal pooling can happen right above the inlet as a result.

Because I was losing the battle against inflammation as shown on my scopes demonstrating attritional changes, I went on Remicade. Remicade cleared up the inflammation in the J Pouch. More resistant to treatment, but at least being held in check, is the stricture at the inlet and the inflammation in the neoterminal ileum above the J Pouch. I think my course of treating pouchitis is a common one. When antibiotics work they may work more on symptoms than on inflammation. Watch the scopes year to year for the attritional changes. It's really important for the long term to monitor how your inflammation responds to the treatment. If you think your symptoms being better/cleared up that means game is over, then you are wrong. It's a long term battle. Scope every year for chronic inflammation and keep an eye on the pattern and location of the inflammation.

Last edited by CTBarrister
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