need a new antibiotic

There's not much reason to treat Cipro, etc. like poison - you can always stop it if the numbness recurs. Permanent damage doesn't generally happen when the symptoms are brief. In addition, these are very different chemicals, so it would be unusual for all of them to cause that symptom. Have you *ever* had the numbness when not on antibiotics? Lots of things can cause finger numbness.

It makes no sense to me that you would have had such symptoms with xifaxin, because xifaxin really is not absorbed into the bloodstream and therefore is normally not the source of any systemic side effects (like numbness). Normally, the only side effects of xifaxin are gastrointestinal (cramps or diarrhea) and not systemic, because it mostly stays in your gut. I am wondering if you had side-effects from some other drug you were taking, but instead blamed it on xifaxin.

The main point of Xifaxin not being systemically absorbed is that you cannot use it to treat any infections outside of the GI tract. It does not mean you cannot have side effects in systems outside of the GI tract. However, it is correct that the vast majority of the side effects are GI related. But, there are rare occurrences of numbness (between 2 and 5%). These things can occur because some of the molecules get into our system and if you are hypersentive, you may have more global reactions (without it being a full allergic reaction).

The fact that Mitch experiences some level of neuropathy with every single antibiotic may mean that he has a hypersensitive neurological system, or even some underlying pathology that he doesn't even know about. This sort of thing is rare, but not impossible.

So, Mitch, has your GI talked to you about alternatives to antibiotics for pouchitis treatment, instead of trying every antibiotic under the sun? Like maybe Pepto Bismol, a short course of prednisone, 5-ASA drugs, something like that? I suggested the prednisone, since you say you don't need treatment very often.

Jan

Other strategies to consider to prevent (rather than treat the pouchitis) could include probiotics (e.g. VSL #3) and a low carb diet. These are fairly intrusive measures, though, since they are every day things to prevent an occasional bout of pouchitis.

Per Jan's statement re prednisone -- what would be considered a "short dose" of prenisone? Also, when you go off prednisone don't you need to goto something else to stay in remission -- or can prednisone alone make you better for an extended time? Our drs have been saying if our son takes prednisone he would need a remssion drug after -- and if he is responsive to prednisone that would be a sign that he has crohns. BUt can prednisone make the pouch better without having a diagnosis of crohns? Thanks.

If I were you, this would be my recommendation (based off of experience). I second Jan's approach.

1. Do a 7-10 day methylprednisolone pack to get your pouch in good shape
2. Start cutting back sugars
3. Start Pepto Bismol in place of antibiotics

Personally, I find that PB works as well if not better than antibiotics. I know that's not the case for all, but it works for me.

A short course of prendisone is two weeks or less. Yes, there would be a presumption that maintenance therapy after a course of prednisone be necessary in most instances. However, prednisone is an option generally in the instance of antibiotic refactory pouchitis. The OP was responsive to antibiotics, but had unwanted side effects with them. So, that makes it different, in that the pouchitis is not chronic.

I don't think that response to prednisone indicates Crohn's. There's more to a Crohn's diagnosis than that. Still, if there is chronic inflammation, maintenance treatment could be Entocort (budesonide), 5-ASA drugs, Imuran, methotrexate, or biologics. Basically, prednisone is for the acute flare.

As an example, I am on Azulfidine and Simponi for my enteropathic arthritis, but I occasionally still need a short course of prednisone for acute arthritis flares.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093723/

Jan

I have nothing against Pepto Bismol, but the bismuth salicylate is acting very much like an antibiotic. Anyone who's taking it daily is not doing something very different from taking an OTC antibiotic daily. OTOH it's cheap and rather safe, and very, very pink.

try erythromycin 500mg, woks well for me..I alternate with Levoquin

Trying doxycycline 100 x2 a day right now.

I have suffered through multiple bouts of pouchitis throughout my 2+ years with the internal pouch. I have tried many antibiotics, with results similar to yours.

I have found that the most effective treatment for pouchitis in my case has been about 1.5 ounces of bourbon daily, and a low sugar diet. I know this seems odd, but it absolutely works for me, and it absolutely takes away the vast majority of "butt burn."

Using this method I have gone from massive doses of antiboitic, to 3-6 Xifaxin a day - no other meds at all, except 1.5 ounces of Jim Beam. If you don't like it straight, mix it with water. Do not mix with sugary sodas.

I have been doing since 09/2011 with excellent results.

Tom in PA

Interesting reading about the bourbon. I am curious to know what affect it has, or why it works for you. Thanks.