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6 replies

Not sure what to do next

A AllisonMember
I've had my pouch for 12 years. All was fine till I had my daughter 5 years ago. Since then I've struggled with diarrhea and dehydration. Gave up gluten, virtually stopped the dairy and the sugar. Things got even worse starting August 1 and was really struggling. A couple weeks ago I had a pouch scope. My pouch looked so good, there was one tiny spot of redness and when biopsied it bled a bit. My GI told me that that could be mild pouchitis but probably wasn't causing my severe diarrhea. That same week I had a stool test and they found a bacteria called Aeromanas.

Given the bacteria in my gut and the biopsy finding of mild pouchitis I was on Cipro for a week. It was wonderful. After about a day I had formed stools that I hadn't seen in years. I felt like a million bucks. No dehydration. I got so excited that I had some dairy - cheese that weekend. Got diarrhea again. I called the dr. office and asked for a couple more days of cipro. They gave me 2 more days. The diarrhea never let up. I'm off cipro now and it's back to the old severe diarrhea.

Any advice or ideas as to what to do next? Not sure if dairy could really undo all that cipro started to do? I've had allergy tests and I'm not "allergic" to dairy and gluten but they do affect me badly. I am wondering if this is more than diet.
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Jan DollarJan DollarModerator, RN, retired
Also, it is quite possible you have a true milk allergy, not common, but still possible, especially with the suspicious renrewal of your symptoms after consuming it. The thing with allergies is that each subsequent exposure is worse. Takes less to trigger and takes more to resolve.

You may want to look at that angle too, once you get your diarrheaback inder control.

Jan Smiler
kathy smithkathy smithMember
It seems to me that if your symptoms are alleviated by taking Cipro and come back immediately after stopping it, that you need to be on it longer or you need to be on antibiotics for an extended period of time until you can achieve and maintain remission. Many people are consistantly on antibiotics and have been, non-stop, for years. I have a friend who has found the very lowest dosage possible to maintain remission and he's fine with that. It also seems that if your current doctor isn't willing to prescribe something that is clearly helping you, then perhaps it's time to find another doctor.

I hope you get back to your 'good spot' very soon.

kathy Big Grin
Jan DollarJan DollarModerator, RN, retired
Yeah, when I am on antibiotics for pouchitis symptoms, my doc prescribes a 10 day course, and can repeat another 10 days if necessary. One time, I had to take it about six weeks.

Since you've had symptoms so long, you'd think you'd need a longer course. Often, symptoms do not necessarily coincide with the severity of the inflammation. You can have bacterial overgrowth without overt pouch inflammation, with the same symptoms.

Jan Smiler
SpookySpookyMember
I agree that the duration seems far too short for pouchitis, or any bacterial infection for that matter. Typically, a prescription would be 10 days. You may also need a combination of cipro and flagyl. When I had my bout of pouchitis, I was prescribed both, and though I am not an expert, from what I've read, the combo of the 2 seems more the norm than the exception. Definitely call your doctor and request another round, and ask about adding the second antibiotic. Best of luck!

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