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Having had pouchitis pretty much non-stop for the past 15 years, I think the efficacy of my Cipro/Augmentin/Flagyl combo is starting to wane.  My maintenance drugs were a combo of Cipro/Augmentin for years (I've been on them daily) , and I enjoyed about 14 days or "normality" at a time before I had to add in some Flagyl in for a couple days to reset things back to normal.  Then it was another enjoyable 14 days.  This rinse and repeat process lasted about 10 years, and then I noticed the antibiotic powers starting to wane.

My normality time period then became about 10 days at a time, and then it was back to adding in some Flagyl to reset things.  This lasted another three years I'd estimate.

The last two years, the success of those three drugs has been a toss-up each week.  I've thrown in some Xifaxan here and there try and shake things up, but I've had limited success with that drug.  I haven't tried adding in Tinidazole yet and i haven't tried the enema route (not a big fan of enemas, but I think I'm at that point where I'd be willing to give them a shot) so I guess there are a few more options to try before going the infusion route.

Is there a good list of antibiotics posted here that folks have used to keep pouchitis at bay? Are any of them as common as Cipro/Augmentin/Flagyl where an insurance would easily cover them? Xifaxan is expensive with my insurance, for example.

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You’re pretty much running the full set. The two things I’ve done (beyond what you’ve described) that have lasted a good long while for me are 1) staying on Flagyl + CIpro, and 2) staying on a maximum VSL #3 dose. Have you tried staying on Flagyl? The VSL (and Visbiome) are quite costly at high doses, but some insurance companies do cover the prescription-strength formulations (mine does, but it took a year-long fight). The other thing you could try is a very-low-carbohydrate diet. This requires patience and determination, but it does help some people a fair amount (I didn’t experience any benefit, though).

My plan, if/when the antibiotics stop working, is to move on to a biologic medication. Some people get great results from those, but some don’t.

Thanks for the reply Scott.  I'd stay on Flagyl but it makes me so damn nauseated and the chalky/nasty taste makes the pills so hard to swallow.  Just having them sit on my tongue for one second makes me nearly gag.  I had tried wrapping them in some peanut butter and then swallowing them, but that's a lot of work to get them individually wrapped up in sticky PB.  I do have a feeling that that combo would work for me, though.  I haven't really been on Flagyl for any length of time.  How do you mitigate the side effects (taste & nausia) I just mentioned?

Regarding VSL #3, would it even have a chance to work if I'm taking antibiotics too?  Would I take VSL #3 in the morning and my antibiotics at night for example?

 

Side effects are different for everyone. I find Flagyl unpleasant to take, but I don’t get lasting problems from it. It does come in capsules, but they’re a different dose (375 mg), which is more than I need.

I take VSL with breakfast and dinner, and my antibiotics at bedtime. I experimented and found that the antibiotics worked fine for me with once-a-day dosing. Sure the VSL would be more potent without antibiotics, but that’s not an option for me. My observation suggests that it’s still beneficial, at least at high doses.

I’m a different case, because rotating antibiotics some doesn’t work and immuran alone doesn’t work, but both together do. Flagyl worked well for me for years, but then I had a bad bout of side effects and neither flashy nor Cipro were effective anymore. I rotate Xifaxan and Levoquin every 2 weeks. I think Levo works a little better than Xifaxan, but I rotate in the Xifaxan to preserve the effectiveness of the Levo. Someday I will probably have to switch to biologics, but I’m holding off as long as I can.

My doc has me rotate between cipro and flagyl every 90 days. Works pretty well. VSL#3 did not work at all and, yes, very expensive. Pharmacist once questioned why I would be using probiotic and antibiotic at same time and said “it made no sense”. Once again, it goes to show that we are all different and there are very few right or wrong answers

 

I am afraid of antibiotics. I know they are very bad for a person, however, I need them for when I get pouchitis, so Cipro works great for me. This could be because I now, after 8 years of suffering on a near-daily basis, have found what works best for my body and I only have to use it a couple of times a year or so.

The first 8 years with my pouch was a nightmare. I thought I would never be well. I eat only the very most strict of diets.  But, I found I needed to experiment or die. I now eat everything. Everything. However, I can only eat small doses of cheese and sour cream. (I eat it okay, but can only tolerate it in small amounts). But, the thing is, I have added black beans and rice to my daily diet. I boil the gas out of the beans and eat them daily in the morning with eggs, or rice, or whatever else I am eating. 

I believe it is the beans, that instead of giving me diarrhea, have actually slowed down my intestine and have made it possible for me to eat normally. Bananas, potatoes, etc have not helped. I can even eat sauerkraut and chocolate.

I do not eat anything processed unless it is absolutely necessary either. I think this helps. I do, however, sometimes eat S&W canned black beans when I am lazy. It seems to be the only brand that does not cause me to have gas.

I also exercise daily and believe this is important too.

I now take very little cipro and it always works after just two or three doses.

 

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