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I wonder about your experience with antibiotics when you have a "low simmering" stubborn pouchitis. I am not sure if I should go on with a permanent low dose as I afraid to experience what many do that it will loose efficacy after a while. Meanwhile it is hard to schedule a rotation when/while something is still working well. I do not know how long I should stay on a particular drug and when to move on and how many to combine and how long breaks to insert. Meanwhile, I see that many of you do not bother at all rotating them just stay on a low dose of Cipro or so and they are fine.

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quote:
I wonder about your experience with antibiotics when you have a "low simmering" stubborn pouchitis.


What you describe is exactly the condition I have, and I have been rotating antibiotics to treat it for 17 years successfully. Although one antibiotic may work well, that will eventually change over the course of time and you will develop a resistance. Also, staying on pwerful antibiotics like cipro and flagyl for months and months will kill all bacteria in your skin and expose you to severe yeast infections. For these reasons, rotation is recommended. I usually rotate every 1 to 3 weeks. I try to stay longer on xifaxin, which is not absorbed systemically and thus enables certain bacteria outside my gut to regenerate. Xifaxin always follows cipro/flagyl in my rotation for this reason.

Been doing this since 1995.
CTBarrister
i've done the low dose of one antibiotic with no rotation while i was pregnant and nursing. i took augmentin exclusively for around 16 months or so. it definitely stopped working after being on it that long. i had to stay off of it for several months before it became somewhat effective again. i would not recommend doing this (unless you are pregnant). i only did this as i didn't have too many options that were safe for the baby. when keeping up a normal rotation, you should be able to go back to an antibiotic in a few weeks. having to wait months and months or have one not work at all anymore is not a situation you want to put yourself in if you can avoid it. this is just my personal opinion and experience of course.
clz81
Thank you both.

CTbarrister, how do you decide if it is 1 week or 3 weeks before moving on to another one, if the current drug is still working? Or do you wait until you see some signs of deterioration in efficacy? Also, do you switch immediately to another drug or do you give yourself a 1-3 week long break?

We are almost on the same "schedule", my ops were in 1993-94, but I had a perfectly symptomless life for 10+ years. But for the last many years I am constantly battling pouchitis. It is likely to stay, so I want to work out something to control it.
A
quote:
CTbarrister, how do you decide if it is 1 week or 3 weeks before moving on to another one, if the current drug is still working? Or do you wait until you see some signs of deterioration in efficacy? Also, do you switch immediately to another drug or do you give yourself a 1-3 week long break?


1. When I rotate is usually an arbitrary decision since none of the ones I rotate normally lose efficacy in less than 3 weeks. I stay on xifaxin longer (up to 3 weeks) per Doctor's orders.

2. I rotate immediately if there is slippage in efficacy, and simultaneously pop Pepto Bismol chewables between dosages, which usually provides immediate relief and corrects the slippage.

3. Can't give myself breaks, because I lapse back into severe pouchitis after 7-10 days, and in my case with narrowed bowel at the pouch inlet it is like playing with fire in a straw hut. The result of this type of fooling around could be a blockage (which I felt coming on last time I "took a break") or, worse, twisted bowel due to the narrowing of my bowel above the J Pouch inlet at the junction with the neo-terminal ileum.
CTBarrister
my rotation is also not set. sometimes i need to get off sooner than others. i also cannot take breaks or my pouchitis would turn ugly. however, one of my "antibiotics" is Pepto Bismol. i give myself usually 3 weeks on the PB, which is very successful. so it is nice to be off the antibiotics for a few weeks and let my good bacterial recolonize.
clz81

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