I just came off my second course of Cipro and the only reason I agreed to it is because the first time I took it (after months of desperately trying to avoid it because antibiotics and I don't get along) I didn't think the side effects were so bad. Well, this time around it was awful. I had severe abdominal pain the entire time, pressure behind my eyes, joint discomfort, and yesterday, my second day after coming off of it, cried all day. All. Day. And now I'm terrified to ever take it again. Next time I flare up I'll be begging my doctor to try something different, but I'm sure his next suggestion will be flagyl. Does flagyl carry the same risks? I'm so bummed - I was doing so well for the first eight months after take-down!

I just came off my second course of Cipro and the only reason I agreed to it is because the first time I took it (after months of desperately trying to avoid it because antibiotics and I don't get along) I didn't think the side effects were so bad. Well, this time around it was awful. I had severe abdominal pain the entire time, pressure behind my eyes, joint discomfort, and yesterday, my second day after coming off of it, cried all day. All. Day. And now I'm terrified to ever take it again. Next time I flare up I'll be begging my doctor to try something different, but I'm sure his next suggestion will be flagyl. Does flagyl carry the same risks? I'm so bummed - I was doing so well for the first eight months after take-down!

(sorry, not sure why that posted twice!)

Flagyl and Cipro are very different things, with very different lists of adverse reactions.

Thank you Claire, I will report those side effects to the FDA! 

Flagyl can cause peripheral neuropathy, but it is largely dose related and with prolonged use. Some people get nausea, and most get a crummy taste in the mouth (they call it metalic, but it just tastes crummy to me). It can react to alcohol, causing severe nausea and vomiting, but I don't have that effect at all. It is in a completely different class of antibiotic than Cipro.

Jan

My 2 cents on both is that Cipro caused my first c.diff infection when I still had my colon.  It was treated with several rounds of Flagyl. I had taken Cipro alot for other infections. 

After J-pouch surgery I got c.diff.  It took 8 months and many rounds of Flagyl to get over it.

When I graduated to chronic pouchitis Flagyl was one of the antibiotics I rotated with Augmenten every 2 weeks. I noticed the peripheral neuropathy in my feet was worse while on Flagyl so it was replaced with Xifaxan in the rotation.

Because Cipro brought on c.diff  my pouchitis was never treated with the Cipro/Flagyl combination that works for many.

Did Flagyl cause my peripheral neuropathy in the first place? Did Cipro? I doubt it as my feet gradually got worse so we can't pinpoint the cause.  There are around 1,000 different causes for perpherial neuropathy. Flagyl made it worse while taking it but I  don't think it caused it in the first place.

Have a safe memorial day weekend

I am sorry about your experience with Cipro.

I got diagnosed with irratractible pouchitits in 2000. Tried every antibiotic, including Cipro, Every single clinic I went to. Remicade, entyvio, everything I tried. I had a fistula so huge between my Anus and Scrotum that when I got it lanced, the surgeon was legitimately concerned. I was getting abscesses lanced twice a month. 

As of today I have been 90 percent better for 1 yr. Firstly and most importantly, my intestines were not absorbing the antibiotics. I randomly started chewing them into paste, Augmentin and Cipro, and my abscesses and pouchitits cleared up in 3 days. Dr Peter Rubin in nyc said "your intestines are comprised and haven't been absorbing the antibiotics for the last 17 years". My scope showed no pouchitits. Some tissue is still damaged where the abscesses were, but nothing is active. Unfortunately I do need to take these antibiotics every day but I am considering trying some other methods. I just don't feel, whatever is out there, is strong enough to kill What's going on in my pouch. Rubin said I had been absorbing about 10 percent of these antibiotics since 2000, because after the jpouch surgery, my gut just doesn't absorb certain things. 

Simithicone... I take about 10 gel caps right before meals. It wipes out gas. You know that horrible cramping we get? That's from gas in the inflamed area sometimes. My pouch has trouble passing gas.

This wipes that out. 

I also use some other unorthodox methods. But science says whatever I'm doing is working. Please make sure you're digesting all your antibiotics. Take the liquid forms if you don't want to chew them up. If it doesn't help you within days, than I guess we all really have different causes for our chronic pouchitits. 

If you decide to take your antibiotics the way I described (Cipro tastes terrible. Augmentin tastes not so bad) and you improve within days, please let me know? Dr Peter Rubin confirmed my pouchitits is non-existent. The reason is the fact my intestines weren't absorbing antibiotics. I am 90 percent better now. That should motivate people at least to look into this with your doctor. I could not leave my bed a yr and a half ago. I had pouchitits and rectal abscess. I go to the bathroom about 3 times a day now. I am on a strict diet. When I go to the bathroom, I sit backwards on the toilet. I know that may sound silly, try it. I believe my pouch empties 20 x better this way. When I'm having trouble emptying my pouch and what's backed up in my small intestine, I give my self a colocort, just to flush out my pouch. I don't know why the liquid in fleet enema doesn't work, but it doesn't. Sometimes I need an enema. Sometimes I do not. I do believe part of our problems stem from not emptying our pouches completely. 

List of antibiotics I've tried (but not chewed in paste or taken in liquid form) since 2000: Flagyl, Cipro, Levaquin, Amoxicillin, Tequin, Zyvox, Xifaxin, Augmentin. 

After cultures were taken I was told Augmentin and Cipro. They didn't work until randomly, just as a hail Mary pass(I had just noticed that I hadn't digested spinach!) I chewed the antibiotics. 

Wow, Stormwatch, I'm sorry for all that you've been through! I think you're right that issues like pouchitis can be caused by not emptying our pouches well enough (there are many other triggers as well, but I have no doubt that's one of them!)

It's interesting that you mention sitting on the toilet backwards - have you ever heard of the Squatty Potty? It's a little stool that's meant to lift our knees into a more natural position for evacuating our bowels (or j-pouches, in our case). I haven't tried one formally, but I do sometimes use a little stepping stool I have and I think it does help me empty my pouch more effectively. If you don't mind sharing, what is the strict diet that seems to be working for you?