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I have had my pouch since 2000. I’ve been fortunate to have had good success with it over the years.
Unfortunately, I had  food poisoning a couple months ago and  it really set off my pouch, as in my control never totally came back.
I had a pouchoscopy  10 days ago and I’m waiting on the biopsy results.
Depending on pathology results, my Dr has talked about putting me on a course of Xifaxan, a pretty powerful antibiotic.
Has anyone taken  this before?  Did this medication help? Were side effects concerning?

Thank you for your replies!!

Alice

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I was on it for a six months. I would not say it is stronger than cipro etc, however in the UK it is given for long term use and deemed better tolerated with less side effects than cipro. The only issue in the UK was the expense and requirement to get it direct from hospital instead of local doctor. It helped, but I thought cipro was better at managing symptoms, rifaximin better for long term. They initially gave a high dose, then lowered it gradually until symptoms worsened to find the lowest dose that manages symptoms effectively. I stopped it as it was too much work to get it each month from the hospital and I do not like the thought of long term antibiotics. Side effects, none noticed.

Thank you for your reply AnthonyA. I agree about being on an antibiotic long term. Definitely worrisome. I am, though, glad to read that you didn’t have side effects. I am in the USA and am on Medicare. Xifaxan is on a high tier and  quite costly even with meeting  the deductible.

My Doctor also talked to me about trying a stronger anti-diarrhea medication. I’ve been taking Lomotil forever and it has always worked well for me.  I don’t know which medication the Dr has in mind.

I take xifaxan 550mg three times daily.  I've been on it for a while. Works very well for me.  No side effects.  Its activity is limited to the gut -  not systemically absorbed as other antibiotics are, so safer for longer term use. My pouchitis was mild, but my pouch tends to get out of whack with bacteria because the mucosa of the pouch wall is loose and "floppy."

In the past I've been on  Cipro and Flagyl.  Switched to Tinidazole for a while (a cousin of flagyl with fewer side effects).    Vancomycin is also used, but usually only when other short term antibiotics don't work.  I've not tried it.    Xifaxan is the only one of the bunch that my doctor will prescribe long term.  

Xifaxan is very expensive.   For a while my  doctor prescribed through a Canadian pharmacy where either brand or generics can fill the prescription by mail and much more affordably.  I used this one, but there are others as well.

http://canadianpharmacyking.com/

Xifaxin isn't absorbed systemically and stays in the gut as mentioned above, so there should not be any concerns about using it long term. However, antibiotics should be periodically rotated in order to maintain their effectiveness. I took Xifaxin in rotation with other antibiotics for 25 years to treat pouchitis before going on Remicade and off antibiotics. I didn't have any problems with long term antibiotic use.

Last edited by CTBarrister

Thank you so much for sharing your experience with Xifaxan. I’m on day 2 now. Although, I got it Thursday but only took 1 to see my reaction.
Yesterday I experienced the stomach pain and nausea soon after taking a pill. Fortunately that went away. But dizziness persisted all day. Just feeling out of it. And got hot flashes ( reminded me of menopause hot flashes.. ugh).
I guess my body has to adjust to it?
I just need to get this pouchitis turned around!  
I appreciate everyone’s comments and advice! I don’t have anyone in my family or circle of friends who have dealt with the UC/ JPouch journey, so I’m glad I have a caring support group to lean on!!
Thank you!!
Alice

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