Advice to coming off anti-biotics?

I can't tell from your post whether you've struggled with antibiotic-dependent pouchitis, and had trouble in the past when trying to stop antibiotics. That's certainly what your treatment  (two antibiotics for an extended period) suggests. In any case, I'd suggest three things for your experiment: 1) start VSL #3 DS if you're not already on it, 2) stop one of the antibiotics first, and see how that goes for a couple of weeks, before stopping the second, and 3) see if you can substantially reduce your carbohydrate intake, which really helps some people keep pouchitis away.

Why do you not want to continue antibiotics?

I'd prefer being off all medication, or at least one of them. Is there any side effects or long term effects of being on them? 

Of course there are. Any medication has potential side effects and the longer you take them, the more likely they are to occur. That does not mean side effects will happen to you. The main thing to keep in mind is that the benefits of a drug treatment outweigh the potential risks.

There are numerous risks for both Cipro and Flagyl. Some are minor and some are major.

Jan

I have been on antibiotics for 20 years continuously and I can tell you for fact I would have lost my pouch many years ago without them.  I would rather take the antibiotics and have my pouch.

It's perfectly reasonable to see how you do without the medication, particularly if you take measures to improve your likelihood of success. It's also critical that you pay attention to how it's going. Medications are always a tradeoff, and as Jan says they always include risks. If you have an illness, though, like antibiotic-dependent pouchitis, not taking medications may turn out to be quite a bit worse. I'd suggest not exaggerating the medication issues while minimizing illness issues.

One option in antibiotic rotation is to include a period without antibiotics. You might find you're okay for a week, or perhaps two or three weeks.  It's conceivable that you no longer need the meds. That doesn't seem to happen for most of us, but answering that question clearly for yourself may make you more comfortable if/when you have to restart the meds.

I like Scott's advice.  I have many health problems and when changing to something or off of something I always do it one step at a time.  If you went off both of them together and had symptoms again you wouldn't know which one was keeping you healthier.  It's good to go on probiotics but if you aren't currently using anything then you might want to hold off of starting them while going off of one of your antibiotics.  I suggest you discuss this plan with your doctor as s/he had some reason for putting you on both.  For example may wanting you to taper off one slowly by taking once a day vs twice daily.

Thank you for all your advice guys, I really appreciate it! I will contact my surgeons office this week and see if she has any advice or a plan of attack! 

-Mike 

It's generally best to change one thing at a time, so we can tell what action we took caused the change that follows (assuming it didn't happen by coincindence, which is always a risk). At some point, though, your experimental question may become "can I stay well off antibiotics even if I do *everything* else that makes sense." That's a very different question than "can I stay well with one antibiotic instead of two?" To answer the first question you might have to do several things at once (e.g. significantly cut carbs and add VSL #3 DS), since otherwise you might start feeling poorly and still not know the answer. In any case, you may have more than one question about what might work, and it's likely that you're best off tackling one question at a time, even if you must change several things for some of them.

For what it's worth, I tried this experiment myself about eight months ago or so, in consultation with my GI. I was already using VSL, but I drastically cut carbs when I stopped the antibiotics. Unfortunately it didn't take long to get my answer, which is why I'm now on Cipro and Flagyl (and, for the record, doing just fine).

I, at various times, tried in isolation every possible treatment for pouchitis known to exist (excepting biologics which I was told by my doctors is a last resort treatment).  The only one that has worked to successfully keep pouchitis away consistently for more than 7-8 days from start of treatment is antibiotics.  I have been able to sustain antibiotic treatment for 20 years because I rotate antibiotics and do not stay on any one antibiotic or combination of antibiotics for more than 2 weeks.  Cipro and flagyl in tandem work the best of any of the antibiotics I have tried.  Reduction of carbs and sugars helps reduce issues, but I have found that like probiotics, it is an ineffective treatment in isolation, and with such treatment I will be very sick after 7-8 days with severe pouchitis, almost like clockwork.  

The antibiotics do not eliminate my pouchitis, however. They keep it in what has been described by my doctors as a "simmering" state, and I have had inflammation and ulcerations show up on every scope for the past 20 plus years. However, I have been completely functional and without symptoms for the most part despite those clinical findings.  During the past 20 years I have worked full time and never missed extended time from work as a result of pouchitis.  I keep it treated and stay on top of the treatment, and that is why I still have my J pouch.

CT so you continually take anti-biotics? What is the method of you taking them, how many of what daily?

Same question for you Scott how many of the Cipro and Flagyl do you take daily? 

It's advised to not drink alcohol while on Cipro, do either of you know why? Is it out of question to have a beer or two while on the medication? 

I rotate antibiotics, from a tandem of cipro and flagyl 1000 mg each per day, to xifaxin 1100-1650 mg per day, to Augmentin 1000 mg per day, 10 days to 2 weeks on each.

I am able to drink simultaneously with antibiotics, but I am not a big drinker.  I did get smashed during the 2012 Montreal Jazz Festival while taking cipro and flagyl and had no issues except usual hangover issues.  I understand that some people can have serious side effects mixing certain antibiotics and alcohol, but I am not such a person.

I take 500 mg of Cipro and 250 mg of Flagyl daily in a single dose. I tried lowering the Cipro more, but symptoms came back. Once a day seems to work just as well as multiple doses, and is much more convenient, especially in helping keep the antibiotics spaced far away from dairy products, vitamins, calcium, and the VSL. I don't rotate antibiotics, mostly because I haven't had any success with the usual alternatives. I found my doses by starting higher and gradually reducing the dose until I went too far.

Flagyl is the one that can be a problem with alcohol. I just haven't tried alcohol since starting the Flagyl, which is a bummer now and then.

Thanks Scott & CT

I apologize I meant Flagyl and alcohol, got mixed up with the two. I might try to take a dose of both once daily as; like you I find it sometimes inconvenient trying to avoid consuming something else that shouldn't be taken close to the meds. I take VSL whenever I actually remember to mix it in with my yogurt; if of course it isn't near the time of taking my anti-biotics. I will ask my surgeon about VSL DS, however I'm not sure I've seen it before, I'm in Canada and have looked online and asked my local pharmacy with no result. Does your insurance cover the VSL#3 DS? 

Thanks again

Mike

Insurance coverage in the US is spotty for VSL #3 DS. My insurance covered it for years, but began refusing to about 16 months ago. I fought with them for a year and finally got them to agree to cover it (including retroactive coverage). I take two DS packets twice a day, and I don't let myself forget.

The key to tinkering with meds is finding something that really works first. Once that's stable you can make a single change and pay attention to the results.

Yeah that makes sense, I'm functioning fairly well taking two of each, twice daily, maybe I'll play around with dosages by dropping one of flagyl daily & see how my body reacts!