Hey Sara, check out this "flow chart" for treating pouchitis: http://www.cghjournal.org/arti...(13)00483-7/fulltext

As you can see there's a lot of steps before pouch removal is even considered. Since you're already receiving care at Cleveland Clinic I would say you're in the best hands possible.

I don't know whether you're on the path to chronic pouchitis, but I do know that being on antibiotics all the time is nothing at all like "doomed."

I have been on antibiotics continually for over three years for pouchitis and still have my pouch. It's not the best situation, but I'm willing to do whatever it takes to keep my pouch.

Won't the body eventually resist the antibiotics?

Pouchitis isn't a simple infection with a single bacterial species. The antibiotics seem to alter the balance of intestinal bacteria in a favorable way. Some antibiotic resistance surely develops among some of the bacterial species, but if an antibiotic loses its efficacy you can switch to another one. Some doctors try to prevent this with rotation, and others prefer to get as much time out of each antibiotic as they can. No one really knows which approach is better, though some folks think they know.

The resistance that may develop often isn't permanent, anyway. Many kinds of antibiotic resistance start to disappear from bacterial populations after the particular antibiotic is removed.

I don't mean to suggest that perpetual antibiotics are ideal. They are much, much better than pouchitis, though, at least for me.

I am going to stay positive and hope the probiotics make a difference. I know antibiotics aren't the worse thing ever, but the whole point of surgery was to not have to worry about flare ups and medications.

I had surgery to feel well and get off prednisone. "No medications" wasn't the point for me at all. Most people need medications of various sorts for various things as they age, anyway.

Not even 48 hours off the Cipro and the cramping and diarrhea are back. Ugh.

it does sounds like you may have chronic pouchitis, but like many of us, you respond very well to antibiotic treatment. I've been on them for 4+ years since i got my pouch, and i'm doing really well. yes, i have burned through 3 antibiotics that will never work for me again, but while i still have options, i'm going to keep using them. if you are really dedicated and can truly manage a full diet change, eliminating sugars or greatly reducing can significantly help and keep you off the anitbiotics. it's really challenging, but the people that are doing it, really see a difference. don't feel doomed. there are medications and alternative diet options that either are working for you or might work. if you want a break from a true antibiotic, try pepto bismol. worked great for me for a year, but like anitbiotics, it will likely become ineffective over extended use.

I am going to see Dr. Bo Shen next week. I wasn't expecting to return to Cleveland so soon. I am currently doing well on Cipro. I hope I can find a way to get off the drugs. Will have to try pepto bismol.

agree with scotts response i think he said it all and very well..

chronic pouchitis is not doomed or hopeless if you respond positively to antibiotics...i got my best mileage from rotating them rather than stay on any one antibiotic for long term..it never help up for me..

no one i know from site has found great success with just probiotics and neither has dr. shen with his multitude of patients..
no one could really promise us we will be med free
getting over the hump of having to take meds would be a positive thing for you...thats the ideal but for many of us its just not the case.. and anyone i know including me had this operation because we ran out of other options with our sick colons.. would have loved if my pouch(or body) responded better to pouch..it has presented its own set of challenges but i am over the denial,anger and into acceptance and working on trying to manage what is..

probiotics helps my husband to stave off pouchitis.

lablover ,thats really great hope it continues to hold off the pouchitis for your hubby but i am thinking there is more to it than that..but again we are all different..just stating that if probiotics(and note there are all different probiotics with different strains) in themselves got rid of pouchitis for most patients all drs would be on that bandwagon.but thats not be proven to be the case...

by the way i was not inferring that probiotics not a good idea..i take them myself..but need other things like diet and antibiotics ..

Dr. Bo Shen has diagnosed me with an autoimmune thyroid disorder and c-diff. I also have a 3 inch sinus. I am taking vanco for the c-diff. I've never had c-diff before. Should I be avoiding restrooms in public areas? Should I not be going to work? I don't want to spread it to anyone.

As far as the sinus goes, Dr. Shen did his needle knife procedure. He is confident he can cure it without surgery.

Just wash your hands thoroughly after using the restroom (as everyone should). Most people are not susceptible to C. diff and many people are even colonized with C. diff without symptoms because their healthy guts keep it in check.

I know you work in healthcare so I would check with a boss or administrator to see if there's a policy about you going to work when you've tested positive for C. diff. I can imagine that since patients who are C. diff positive are usually placed on contact isolation they might not want you to work with patients until you test negative, but that's a wild guess. I don't work in healthcare and I went to work, traveled, used public restrooms, etc while I had C. diff. I also shared a bathroom at home and no one else got sick.

I don't start my new job until end of July. I am currently working contingent in a nursing home. Probably not a good idea to work with the elderly. I think I'll avoid picking up hours until I'm done with the antibiotic in two weeks.

Hopefully the Vanco does it's job, because plan B is fecal transplant. I know people have done fecal transplant, but it honestly creeps me out. I feel anxious being off the Cipro. I keep expecting the cramps and urgency to come back.

I'd be more worried about you than the elderly patients! Nursing homes (and hospitals) are especially notorious for incubating virulent strains of antibiotic resistant C. diff.

Jan