Has anyone here had a redo and then had pouchitis which in turn had to have the redone pouch removed? I had a few bouts with pouchitis with my current pouch and 6 weeks out from having a redo for mechanical issues. I;m having a few doubts now that i will get a new pouch and then have pouchitis issues.

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pouchitis has lead to my needing the pouch removed.  happens in about 3% of the cases, so i was told by one doc.  have read it might be higher percentage.  have had chronic pouchitis for all 15 years and have cycled through every drug.  am either allergic to the drug or it is no longer effective.  just one example....  jlh

Fair enough, JLH - I may have overstated things. It's certainly true that if you are stuck with chronic pouchitis and run out of ways to keep it in check, you may indeed have no reasonable choice other than giving up on the pouch. So far I've benefited from reading Shen's pouchitis paper more carefully than my doc, but I guess if Cipro + Flagyl fails me I might not find an adequate alternative. I've alrerady started thinking that Xifaxan combinations could be something to try, if needed. Xifaxan alone did nothing for me, but the same was true of Flagyl, which nevertheless has been a perfect partner to Cipro in my body for a couple of years.

in addition to the antibiotics mentioned i have used augmentin, which i am refractory to, and levaquin (in the cipro family), which  caused systemic and extreme tendonitis.  also i use up to 3 1 g. canasa suppositories daily--for both cuffitis and pouchitis, and vsl#3 capsules directly into the pouch.  am also on entyvio infusions, but this summer that simply stopped working.  also, how could i forget, am on the lowFODMAP diet, which does help   that's enough!!  jlh

There are plenty of antibiotics to try, individually or in combination. Bad side effects from one (or several) of them really don't predict anything about how well a different one willl be tolerated. At a certain point we may just get exhausted, of course, but success is more likely for the persistent person. I think *anyone* struggling to find a pouchitis treatment should probably try Xifaxan, at least if they have health insurance (it's expensive).  Other options include Tindamax, Doxycycline, and Ampicillin.

New pouch here... was told pouchitis won't happen and if it will it will be easily controlled... here I am with ~15 BM's a day due to "mild" pouchitis.

 

I already said that I think getting a redo is crazy. I wish I had never heard of jpouch, but I know everyone is different.

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