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Well i have been following this sight since 2009 when I had my J Pouch surgery. Since that time I have had many problems with pouchitis and pressure in the butt. I have been getting since the very beginning. I go see my surgeon yearly for a checkup and each time I am infected and I am not aware that I am. She puts me on cipro and gives me 4 refills for the year. I am on it again and it works until I reduce the amount. Within 3 days I am back in pain. I asked the surgeon what is causing it and she says they don't know but figure its an infection because the antibiotics take care of it. She says there are only a handful of people like me. She is suggesting that I may have to go back to the ileostomy for good! Can any of you give me some feedback on this. I do not want to go through that operation again!!!
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Gee, after all this time, how about seeing a gastroenterologist instead of a surgeon? It would seem that your surgeon is not really thinking about long term maintenance. However, it is possible that taking Cipro in cycles might be the best option for you, since continuous use can lead to bacterial resistance or even worse infections.

A GI may be able to determine if you have other things going on besides pouchitis, like IPS, bacterial overgrowth, cuffitis, etc. Did you read the article in the "sticky" in the pouchitis forum? It might help guide you in regard to what you think might be going on with you. Sure, it is possible that ileostomy is ultimately what you will need, but I would want to be sure there was not something going on that is treatable first. At the very least, I would want to rotate antibiotics instead of just staying on Cipro.

Jan Smiler
If you're fine when you're on antibiotics, you may just have antibiotic-dependent pouchitis. This isn't rare, and it isn't a reason to return to an ileostomy. It could be a reason to simply stay on antibiotics all the time. As Jan says, some gastroenterologists prefer to rotate them (change the antibiotic every few weeks). The surgeon doesn't sound like the right person to help you sort this out.

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