I have been treating pouchitis for a long time-taking Antibiotics for pouchitis about 4 (or more) times a year for the past 8 years. Cipro doesn't work anymore. Tried a bunch of different antibiotics last year and resorted to Flagyl (causes me nerve damage). Can't tolerate VSL or probiotics (or yogurt). Eating Metamucil wafers everyday helps normally. But,think I need antibiotics again. I'm afraid to overuse Flagyl...don't want to become resistant to it. Any ideas?

Have you tried xifaxin and augmentin?

What about old UC meds like pentasa ( oral or suppostories ) etc

You may want to talk to your doctor to see if it is feasible to swap tinidazole for metronidazole (flagyl) if the latter gives you problems. I don't know if this is acceptable, but it is worth asking about.

I have chronic pouchitis and cuffitis, which depending on the doctor is really Crohns. The regiment I have been on for the last few months has improved things significantly. I take Xifaxan 2x a day, Entocort capsules once in morn, nightly Canasa suppositories and Cortifoam enemas. My nights weren't as improved as I'd like with this regiment, adding one Renew life Ultimate Flora 50 Billion probiotic capsule at night has helped me get a full night's sleep for the first time in years.

Good luck finding your solution.

DJBHusky-Yes, tried Xifaxin last year-didn't work. Hmmmm-can't remember if I've ever tried Augmentin. Sounds very familiar. Phamacy says that I haven't had it in the last year and a half. I may have taken it in the past for another problem.

AllyKat-Pentasa? Interesting...my Dad, who has his colon and UC, takes Asacol (I think another name of the same drug). He has had great success with it. I think I tried Rowasa enema 9 years ago for pouchitis-didn't work. It looks like Rowasa might be another name for Pentasa. Not sure.

LuckyOne-Never tried Tiniadzole (but it seems like it is for parasites?). I can see what my doctor thinks.

RessurectAgain-Hmmm...Entocort...very interesting. This one gets my attention. Scope from years ago showed Ulcerations in Pouch and a little up the intestines. Also, labs from a dehydration in March 2010 show blood in stool. I have used the inhalant nasal form of Entocort, Rhinocort,for sinusitis, but it seems to have given me thrush (yeast infection in mouth). Another med to discuss with my Doctor.

Thanks for your thoughts!!! Keep 'em coming if you have any other ideas It is so nice to "chat" with people who understand!

I've been using levaquin when pouchitis crops up. Lately, it seems to be effectively only while using it and for a week or 2 afterwards. So last time, my surgeon put me on the levaquin for 10 days, and then immdiately put me on xifaxan to use indefinitely. So far - it's been working great! Knock on wood.

quote:

Never tried Tiniadzole (but it seems like it is for parasites?)

It, like metronidazole (flagyl), is a anti-protozoal medication.

While waiting (and waiting) for the physician's assistant to get back to me...I went ahead and started Flagyl. I'm at 48 hours now...no improvement yet.

I called and asked the PA to prescribe Entocort (since I am headed toward Labor Day weekend), and I would like to try that if Flagyl doesn't work. My dad (an anesthesiologist and UCer) thinks this may be a good choice for me. I have an appointment with the my Duke GI Doc (Sept 27th)..I'm hoping to improve on the Flagyl and discuss other options then. I have been out of touch with the her for a year.

I had a 1 step procedure, so I have never had an ostomy. I kind of wish I had so that I would know what it is like. Whenever I have pouchitis that isn't responding right away...I get nervous and wonder if I will end up, eventually, with an ostomy.

Again, thanks for the support

I have had pouchitis issues ever since takedown almost three years ago. I get discourages with xifaxin (which seems to work) but when alternated with doxycycline(it doesn't work) then I back slide to fatigue and the whole bit. I have used cortifoam - made my anal area sore and irritated. Also take tincture of opium. These are all very expensive but I do have insurance. I am contiplating going to a permanent ileostomy because maybe then I would feel better, no pouchitis and fewer rushes to the bathroom. What do you folks think???? I am just tired of being tired all the time.

Selma-

I have my doubts that a permanent ileostomy solves all of the issues, but it sure does add some very scary ones. I recall my 3 months with a temporary was pretty horrific, I felt like a real freak, can't be without the bag since you spew constantly -and the raw skin around the Stoma. I'll need to be half-dead in the hospital before I give up this crappy pouch.

Ironic. As I'm reading Mental Kase's post about the horrific bag, I smell something foul. I look down and my bag has worn through on the bottom.

2 more weeks until my takedown, I can't wait to be able to poop out of my butt again.

I have the same problem. Been a pouchie since 1987, nothing seems to make life bearable. Florastor a probiotic seems to help some, but expesive. Don't do the flagyl too long. I did for 4 years now have perpheral neuropathy (nerve damage) in both feet...never ending pain. It's as irritating as the pouchitis...and I'm still running to the toilet 12 times a day!