Some of us are on high doses of cipro for long periods. I often take 1000 mg a day and have been on and off cipro for almost two years. Way more time spent on this med than off for me and my liking. When you see your doctor hopefully you can lower the dose and wean off the medicine. All medicines have side effects and I think the concern with this one is being in it for very extended periods of time or constantly, if you have antibiotic dependent pouchitis. That's not to say that you may not experience the harmful side effects even on short doses at high amounts.

If the Cipro isn't working, I'd wonder why you're still on it (instead of trying something else). You may have something other than pouchitis, of course, and it's good that you're scheduled for a closer look. Have you been tested for C. Diff? (Some of the tests are more reliable than others). The bleeding sounds different from garden-variety pouchitis.

was negative for c diff. I saw a posting "what ever gastroenterologist shoud know " and wonder if it's related to my PSC ?

Bleeding is usually associated with cuffitis, which is similar to a return of UC to the retained rectal cuff. Antibiotics are not the appropriate treatment, mesalamine or hydrocortisone suppositories are usually prescribed. It is possible that your PSC may be a contributing factor, but I would tend to think not.

Jan

I have the watery movements,and cramps too. Up five times last night going to the restroom. A little gas bubble causes painful cramping.

When I had a similar problem 4 years ago, my then gastro. mentioned we might have to try Budesomine. Fortunately the Cipro and probiotics eventually worked. I'm not familliar with budesomine,has anyone tried this,and what side effects are there ?

Budesonide is the generic name for Entocort. It is a steroid that acts topically and is poorly absrbed systemically. Cuffitis symptoms are the same as pouchitis, but with bleeding in addition.

Jan

Thank you for the replys.I've always just "gone it alone",but this time it's much more serious. Before I discovered this forum,I didn't realize that many people had pouch problems. I agree with one of the above comments, if a month of cipro has not hepled,it's time to try something else.I'll check into the budesomine some more,in case the doctor wants to try that.

4 years ago I had a raging case of pouchitis and was heavily bleeding and really sick in the hospital. So, yes it can happen. I have no cuff. That time I was put on enemas and remicade. I was in remission until last Sept and have been fighting this monster again. In Nov my GI put me on endocort. I was hysterical about taking it but I knew I had no choice and was getting sicker. It was great? I felt better in a day and had tons of energy, so side effects. Not like pred at all. My GI wants me to stay on it like forever but short term is ok otherwise it's not an option for me cause I read that after a few months u can start to get pred symptoms. Don't be afraid to take it but then u still have to find a maintenance drug. My choice right now is pentasa and canassa. I'm also finding diet helps. I am blessed that I have a good GI that gives me suggestions and lets me do my own thing too.

is pentasa like endocarp?

Pentasa is mesalamine, same as Asacol, Colazal, or Lialda. Entocort (budesonide) is a steroid, like prednisone, but is topical, rather than systemic.

Jan

I have not really noticed any steroid symptoms from Entocort and have pretty much been on one dose or another for a couple years. Mayo Clinic is doing trials right now to look at entocort as a maintenance drug for UC. The only possible side effect I may have noticed is that my fingernails seem to peel a little more frequently. The advice on how long one can stay on entocort may be changing as more is learned.

How are you now techwrench?

I'm finally close to normal again.The flex sig a month ago revealed inflammation in the pouch and cuff.Dr. put me on budesonide - 3 pills daily.I found with that dose, I had terrible gas and bloating.Went to 2 pills a day,and the inflammation started to come back.I am now taking 2 pills at once,and the third pill 2 hours later to spread the dose out.This has worked real well.The gas problem was odd.The only way to get it out, was to use enema irrigation to expand the pouch,and then empty.The gas would come out at the very end.I see the Doctor next week to figure out what to do next.I am very concerned that if I go off the medicine,the pouchitis will return.