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Hi,

So I’ve been on Flagyl supp to battle a presumed pouchitis since early September. The doses have gone from 500mg for 7 days -> 2x500mg for 10 days -> 2x500mg for 21 days.

Flagyl works, I get control and an acceptable output, no nightly leakage and no pain. No side effect.

But alas, 4-5 days after the last pill I’m back in the same state as before. Watery output, frequent visits to the bathroom, lack of control and rumbling belly..

I’ve spoken to my GI and they are leaning towards using flagyl as maintenance treatment but I’m sceptic.

Seams like a recipe bound to fail at some point..

Does anyone have a similar experience? How did you get out from the pouchitis-cycle? Did you go for a different treatment, stayed with flagyl or something else?

cheers

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100% it will fail at some point, if you are in the chronic antibiotic dependent pouchitis category as I was for 20 plus years. You will eventually need to rotate antibiotics every 2 weeks or so. Otherwise any one antibiotic loses efficacy over time. Flagyl is probably not most effective when taken alone. It is best taken in tandem or as a "cocktail" with Cipro or Levaquin which is a different antibiotic family providing different, and therefore greater, coverage on bacteria. When you rotate you should be aware of the different antibiotic families and never rotate directly onto another antibiotic within the same family. This is essentially "antibiotic incest". For example, NEVER rotate from cipro to levacquin as both are in the same family.

To the extent symptoms start to return I would suggest using Pepto Bismol between antibiotic dosages and at least 2 hours before or after so as to not interfere with antibiotic absorption. PB will clear up symptoms when slippage is observed, but you can't rely on it exclusively.

Eventually I got off antibiotics by going on Remicade in 2015. It doesn't sound like you are ready for Remicade yet. Antibiotics are first line pouchitis treatment and biologics are second line. You need to exhaust your potential treatment with antibiotics first. I rode the antibiotic train for over 20 years. You might be able to exceed that but you are just in an antibiotic puppy at this point and you don't need to fast forward to other treatments yet before you tap out the first line of treatments. You always use up your bullets before you go to cannons, if you are winning with bullets.

Last edited by CTBarrister

@henrik, I’m sorry it looks like you may have to stay on antibiotics. I was able to delay my need for continuous antibiotics for about a year with high probiotic doses (in my case VSL #3 DS, but Visbiome is very similar). Eventually, though, I was on Cipro full time. I tried each of the other candidate antibiotics, but none of them worked by themselves for me. CT’s recommendation of antibiotic rotation can only work if you have more than one treatment that works. Cipro alone worked fine for me for 5-6 years. When it started to lose effectiveness it turned out that adding Flagyl did the trick (even though Flagyl alone never worked for me). That’s still my (very effective) routine, and I’ve been on antibiotics for about 12 years now. In order to minimize side effects it’s worth experimenting to find the lowest *fully* effective dose. For me it seems to work just as well (and more conveniently) taken once per day rather than multiple times. I still take high dose probiotics, and in my case they seem helpful (but expensive). There is research showing that high-dose probiotics can decrease the frequency and severity of pouchitis episodes, but I don’t think they’ve been well studied in chronic pouchitis. Fortunately my insurance covers VSL #3 DS, but many US insurance plans no longer cover this. I don’t know how this would go for you in Sweden.

I think you’ll be fine - I’ve certainly done extremely well in spite of having to treat chronic pouchitis.

I have to wonder if the bacteria in Visboime, or any or any or probiotic species, are not immediately obliterated in the presence of metronidiazole and/or fluroquinilone antibiotics. Does anyone have any data regarding this?  I start VSL or Visbiome the day after Flagyl threapy with plenty of non-sweetned Greek yogurt (to nourish the lactose-eating microbes) to try to repopulate my 30 year old pouch after a bit of occasional pouchitis, and it seems to work. The caveat here is I have no placebo controled experiment to say this is exactly what is working, though somthing in this regimen clear does. Well worth a try, IMHO.

@Steven Silz-Carson there’s certainly theoretical reason to expect most antibiotics used for pouchitis to affect the behavior of bacterial probiotics like Visbiome or VSL #3. IIRC the package instructions suggest that the dose might have to be increased, and that it should be taken well-spaced away from antibiotic doses, which is part of why I went to once-daily antibiotic dosing. I wish I had the luxury of resuming my probiotic after completing an antibiotic course, but my antibiotic course never ends. I can report that empirically my situation is appreciably better with antibiotics + probiotics than with antibiotics alone, but the very high dose of probiotics that I seem to need could well be because the antibiotics are killing off a lot of probiotic bacteria.

I have to wonder if the bacteria in Visboime, or any or any or probiotic species, are not immediately obliterated in the presence of metronidiazole and/or fluroquinilone antibiotics.

My treating gastroenterologists have raised the same question as far as taking antibiotics and probiotics together. It seems like the probiotics would be defeated by the antibiotics, but it may have something to do with exactly what probiotic strain mixes are being used. I did try using VSL#3 (or so called at the time) alone, but it had no effect whatsoever and was like taking a very expensive placebo. My GI at the time was highly skeptical about VSL#3, but did say it worked for some people, but apparently not many.

Apart from that question about probiotics as a useful treatment, I do agree with the strategy of using both cipro and flagyl together as I found that much more beneficial than using either one alone.

Its also true that I found a large number of antibiotics effective and was seemingly mostly immune to the side effects of all them (with some exceptions discussed below), but I had my best results with the cipro - flagyl tandem. The others worked, just not as well. And I found that the dosage mattered for me, until I was able to wean off them using Remicade.

I was at one time using 1000 mg cipro and 1000 mg flagyl and was on it for a long time, and I think the failure to rotate created side effects, namely a breakout of yeast infection and warts that my then dermatologist called the "worst I have seen in 30 years of practice." A combination of rotating onto xifaxin (not systemically absorbed) and diflucan snapped the yeast infection after around 1-2 months, and the warts had to be frozen off, some in multiple appointments.

One other side effect of cipro is it will seriously sensitize you to sunlight. I have a darker complexion and tan easily, and I noticed I would burn much faster when on cipro. Therefore, a lot of sunblock is needed when on it, otherwise long forays into the sun will be painful.

Other antibiotics that worked well for me were augmentin, levacquin, and keflex. All were in my rotation at one time or another. Cipro and Flagyl are the go to antibiotics for pouchitis and I think they are meant to be together, sort of like Laurel and Hardy, Abbott and Costello, and Batman and Robin, just to name a few other famous duos.

Last edited by CTBarrister
@CTBarrister posted:

My treating gastroenterologists have raised the same question as far as taking antibiotics and probiotics together. It seems like the probiotics would be defeated by the antibiotics, but it may have something to do with exactly what probiotic strain mixes are being used. I did try using VSL#3 (or so called at the time) alone, but it had no effect whatsoever and was like taking a very expensive placebo. My GI at the time was highly skeptical about VSL#3, but did say it worked for some people, but apparently not many.

Apart from that question about probiotics as a useful treatment, I do agree with the strategy of using both cipro and flagyl together as I found that much more beneficial than using either one alone.

Its also true that I found a large number of antibiotics effective and was seemingly mostly immune to the side effects of all them (with some exceptions discussed below), but I had my best results with the cipro - flagyl tandem. The others worked, just not as well. And I found that the dosage mattered for me, until I was able to wean off them using Remicade.

I was at one time using 1000 mg cipro and 1000 mg flagyl and was on it for a long time, and I think the failure to rotate created side effects, namely a breakout of yeast infection and warts that my then dermatologist called the "worst I have seen in 30 years of practice." A combination of rotating onto xifaxin (not systemically absorbed) and diflucan snapped the yeast infection after around 1-2 months, and the warts had to be frozen off, some in multiple appointments.

One other side effect of cipro is it will seriously sensitize you to sunlight. I have a darker complexion and tan easily, and I noticed I would burn much faster when on cipro. Therefore, a lot of sunblock is needed when on it, otherwise long forays into the sun will be painful.

Other antibiotics that worked well for me were augmentin, levacquin, and keflex. All were in my rotation at one time or another. Cipro and Flagyl are the go to antibiotics for pouchitis and I think they are meant to be together, sort of like Laurel and Hardy, Abbott and Costello, and Batman and Robin, just to name a few other famous duos.

Other antibiotics that worked well for me were augmentin, levacquin, and keflex. All were in my rotation at one time or another. Cipro and Flagyl are the go to antibiotics for pouchitis and I think they are meant to be together, sort of like Laurel and Hardy, Abbott and Costello, and Batman and Robin, just to name a few other famous duos.

Love your sense of humor! XD

Just a theory, but may (high dose) probiotics fill the spaces of the bowels mucus to prevent them from being inhabited by "bad" bacteria? (even if most of them are killed again in the course of antibiotics if there is such a treatment)

Inflammation and diarrhoea are a reaction of our immune system to bacteria (and possibly other fragments) that should not be where they are (in the mucus layer). Holding that border may be eased by "flooding" the bowel with "harmless" bacteria.

I have had a Koch pouch for over 40 years  with pouchitis symptoms becoming moderately more problematic ( I. E. More frequent) during the past 2 years. (? A function of aging as I am about to turn 69)Thus far I have responded to 1000 mg Cipro and 1000 mg Flagyl daily for 5 days. I also take a probiotic between meals during these flares). I employ the aforementioned medical regiment only when I absolutely have to as my fear is towards the development of resistance towards the said medications.

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