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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I can't see why you worry before actually having a pouchitis, moreover pouchitis is in most cases very treatable and manageable.
See this paper from the University of Bologna: http://www.ncbi.nlm.nih.gov/pubmed/8482169
Pouchitis rarely leads to pouch failure. Have you had intractable pouchitis in the past?
that study is over 25 years ago..lol. I had a few bouts of pouchitis
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.
Flagyl makes me nauseas, i cant take it. Have you guys tried Entocort at all for pouchitis? Shen had me on it for like 6 months, but cant remember if it was for the cuffitis or pouchitis? pretty sure it was pouchitis.
http://www.medscape.com/viewarticle/557837.. this is from 2007 but talks about Entocort used for remission of pouchitis
I've never used Entocort for pouchitis, though I'd happily try it before abandoning my pouch. I'm on a pretty low dose of Flagyl (250 mg once a day), which will tend to cause fewer side effects than higher doses.
that study is over 25 years ago..lol. I had a few bouts of pouchitis
This means that in 25 years things are more and more improved so still less cause for worrying
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.
I too am diverted recently because of pouchitis gone bad. 15 years. My pouch is still in, how I would love to reconnect but not possible.
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.
