Cipro

I am taking Cipro at present for the same thing just finished ten days of it t so weeks ago and back on it again have another repeat on the presc. Will have pouch removal soonI hope stRting the fourth month of waiting for a surgery date told it maybe six months. No side effects from the Cipro always take with plenty of water.  Good luck should work for you surprised you have not had before as it is the go to for this as well as Flagyle

Thanks Shawne - good to know it helps. I've never been offered as mostly a recent issue as in past 6  mos. also was using irrigation tube to empty. But lately very cronic so was just in hospital and she suggested it. So you're still having surgery even with the antibiotic success?

I've been on Cipro nearly full-time for about 4 years now. As far as I know I have no side effects, perhaps some tendinitis. It stopped working alone about a year ago, and adding Flagyl did the trick nicely.

Have other issues bleeding told it is CD the inlet to pouch is obstructed unless I stay on pred have been on it for three years the side effects are now too much to ignore stree fractures in the sacrum was the final straw.  Could not eat solids for almost a year 

lived on Ensure and clear soup lost 30 lbs finally tried pred the only thing to help biological did not work for me. I hope for the best can only move forward.

Yes for sure. This surgery will def hopefully give you your life back. Too bad you have to wait so long for it. Why are they that booked up in advance? I have the best in Canada here in Toronto and can get in by October.

Wishing you all the best.

Live in pei only two surgeons in Hfx do the work needed so have to wait my turn did see Dr Cohen in TO a few years back but even then waited a year to see him.  Find many Dr leave and go to the U.S. after they get experience.  The guy who made my pouch in 1986 now is in the U.S. Last I heard.

Yes that's too bad. I'm not sure if you could possibly get a referral to Dr Macrae at Mt Sinai in Toronto but might be worth investigating but I'm sure by then it will be a wait as well. Are you happy with who you have now?

I think I will be he trained under Dr. Cohen in TO so should know his stuff which when it comes down to it is the most important thing he is hard to get in to see but it is the system not him that is the problem will just have to wait it out.

Cipro constipated me quite badly, but I did better with a lower dose (250 mg rather than 500 mg).  I would not recommend any other stool thickeners while you're taking it, and you may perhaps need to supplement with prune juice to keep things going.

Spooky- thanks for the tip. I'm not taking anything with it. Just took my second dose but feel ok so far. Do you know long term effects from it? I am booked for surgery in October as I don't think I would want long term antibiotics. Not even sure yet if this will be ok for me.

Cipro has a long list of possible side effects, like many medications, and some can be unpleasant if you're unfortunate enough to experience them, but it doesn't have any cumulative long-term effects. A few months isn't very long-term.

Scott- I was thinking if it works that it would be tempting to stay on it but is that a permanent fix for a non functioning pouch? My concern is then having surgery down the road and not getting any younger.

Fosty-

Cipro is, for now, *my* permanent fix. I've been glad to have it available (and use it) for years. I've had to add Flagyl in the past year, which I'm also glad to have. I think about it very differently than you, though. I think my pouch is functioning great! I scuba dive, teach martial arts, and work full time. I have no pouch-related pain, no urgency, no leakage, and I almost always sleep through the night. I have no significant side-effects from either medication. How on earth could I consider this a non-functioning pouch? I have to take the medicine, or I'll quickly run into pouch trouble, but the same sort of need for medication happens to people with many different chronic conditions. Of course I'd prefer to feel this well without medication, but that's not on the menu.

I wish meds did not stop working. Unfortunately the pouch was the one that told me it was time to go. I was just diverted but I'm not recovering so well. I think it should have all come out. When the meds worked I felt great. But I knew this was coming for about 2 years. I held on. Good luck with your surgery. I'm hoping I won't need another one to remove it. I hear it's a big scary surgery. Yes, and I'm in my 60's now. 15 years good and bad with my pouch. 

Ally- hope things improve soon for you. I too am your age group and it's difficult at our age with recovery. I'm feeling good with meds right now....but what is the long term?!? I am booked for surgery in Oct but feeling good at the moment and my mind is playing tricks on me. Almost rethinking things. Wishing you a better week coming.

I too am in that age group had my pouch since 1986 the last years have been one problem after another when something worked like a certain med or a diet change (I haven't eaten raw fruit or any veg or salad etc in approx fI've years) I would convince myself this is not so bad i can live like this but now all the steroids are showing the damage they can due so I guess it is time.  I am worried because of my age as well as a super bug you can pick up in hospitals is not a good thing.  All we all can do is hope for the best and move forward. I heard the hospital I will be in now has a bed bug problem go figure!!!

It's important not to mix up long-term steroid use, which is incredibly damaging, with long-term antibiotic use. Long term steroid use is absolutely worth having surgery to stop. Long-term antibiotic use (assuming they are working well) is likely to be better for most people than surgery. Some folks here have done well on rotating antibiotics for as long as 20 years, if my memory serves correctly, and I've been doing it for about 5 years (with much less rotation).

 

It's tempting to imagine a perfect result from surgery, but we wouldn't be having this discussion if that were guaranteed (we're discussing, I think, antibiotic-dependent pouchitis, a less-than-perfect result from J-pouch surgery). Surgery will create more adhesions, risk of complications, and an uncertain result. Heck, sometimes it doesn't even help the problem. It's also tempting to imagine long-term consequences from medications that may be exaggerated. IMO surgery is best reserved for things that *acceptable* medications can't handle, with thoughtful consideration of what "acceptable" really means.

I feel for you in Canada having to wait so long to see a Dr. 

Scott I totally agree with you. 

Scott - I will definitely consider what you are saying. I have time to see how this will work for me and would prefer not to have the surgery if I can help it. Time will tell. Thanks so much for all your input as it is very helpful especially with being new to the antibiotic treatment.