Hi everyone. I have just joined this group and this is my first message. I was diagnosed with ulcerative colitis in 1993 and had the pouch surgery in 1996. I started getting pouchitis every now and again but in 2002 I just could not get rid of it. I have been taking Cipro ever since. I have tried VSL#3 but pouchitis seems to come back as soon as I stop taking Cipro. Recently I tried to decrease the amount of Cipro I take and now I am getting pouchitis while I am taking Cipro. I have another appointment with my doctor next week but wanted to know if there is anyone else who is experiencing similar problems with pouchitis and how they deal with it or get rid of it! I feel like I have it all the time! I would appreciate any comments, experiences or advice. Thanks, Kym

Some doctors are now using other antibiotics with or in place of Cipro. You might ask your GI doc about that possibility. Wishing you the best.

When I was reading your post it was very similar to my case I discovered ulcerative colitis around 1993-1994 around that time after the doctors investigating they come to the conclusion that my large bowel had to be removed and that's how I ended up with the J pouch in 1996 I've been living with it ever since but in the last two years I've had pouchitis which almost feels like ulcerative colitis I have been on three different kinds of antibiotics there named ciprofloxacin, flucloxacillin,metronidazole I hope they will be helpfill to you the names of them a spell correctly I've also been trying probyotics they don't seem to work with me and because I live in the UK I could not get VSL#3 and thay take too much money to import here but there was a chance they maybe didn't work any way I seem to get relief on the antibiotics thay work short term working for me I seem to adapt to them if you get them from your doctor I hope what thay work better for you.

good luck i hope you get your life back soon

After years on Cipro with great results I, too, had pouchitis return. We decided I had built up a resistence to it, so I stopped taking Cipro and then tried other antibiotics (nothing worked quite as well). After a while no antibiotics seemed to make any difference at all. So I go off all antibiotics (more narcotics to control diarrhea) and then after a few months start taking antibiotics again and this sseem to work well for me. Gosh it can be such a juggling act so hang in there. Sarah

Kym:

I have had something akin to chronic pouchitis ever since takedown 8 months ago. I do not understand why one day without meds makes a difference, but it does. I am now on Augmentin as Cipro gave me joint pain. I still take way too many narcotics, but otherwise I live in the bathroom (and stupidly we are having ours remodeled right now!)

I wish someone could explain what the antibiotics are doing because it doesn't make medical sense to me. One day off antibiotics should NOT cause an immediate infection. Oh well--it must be something.

Donna,
I know what you mean by one day off antibiotics shouldn't cause infection. I have the same prob. I felt symptomatic, but was shocked when my colo-rectal surgeon did a sigmoid and saw no inflammation at all. He said that my pouch is so ultra-sensitive to bacteria that even the slightest imbalance can cause the condition to flare up. Weird, I know. I too was getting joint/tendon pain after 1 year on cipro, so now I'm doing 1 week on a month, and pepto daily in between. The pepto really helps. I just take a swig daily. Every couple of months, I stop the pepto for like 2 weeks so I don't get that metal build-up thing that Jan wrote about before. It's cheap, works, and I'm getting used to the taste....

Thank you so much everyone for your replies! It sounds weird I guess but it is just comforting to know that I am not the only one - not that I wish for anyone else to struggle with pouchitis. Thanks Neil for sharing your story - we do seem to have very similar stories! I too tried a lot of different antibiotics which didn't seem to make any difference before I started taking Cipro. Donna I am not sure what you mean by narcotics -are they like Immodium? Thanks again everyone!

Hi Kym, I too have pouchitis that just wont go away. It seems like it was getting better but now its back just the same. Now my doctor is putting me on Flagyl and cipro to see if that works. If not then she is going to try endocort. Hey donna you mentioned you are on Augmentin? I was on that for a sinus infection and my doctor told me not to take that because it could make the inflamation worse. She told me about 4 other antibiotics I can take for sinus infections but Augmentin was not one of them. I get so confused on what I should take and what not to take. Plus Im exhausted from my pouchitis and frustrated. I hope we all can find something to fix our situations. I'm tired of being tired everyday. Let's keep our finger's crossed and hopefully we can get through this.

Hi everyone:

Mezzi, my colorectal surgeon said the same thing--my pouch looked great. Sad thing was, I didn't feel great. But it is nice to know my pouch looks fab. Maybe I am super sensitive too. After TD I had an anastomosis leak into my belly, so I started out on the wrong foot. I never really had a good day without antibiotics after TD.

The narcotics include tincture of opium which really is the only thing that slows down my guts--I take 2-4 times a day depending upon the state of my BMs. I really can eat very little without an almost immediate reaction, so when I do stray from starch and peanut butter as my main diet, I up the dose or it is many hours on the toilet. The Immodium seems to help very little, but it seems less "bad" than the tincture. I hate feeling like a drug addict (I know I am not, but still). I also take a 1/2 of a percocet at night so I can TRY to sleep for a four hour stretch.

In terms of Augmentin, that was the recommendation of my "second opinion" at the University of Washington. They told me to rotate antibiotics--two weeks on--one week off. I tried tetracycline and clindamycin as well as Augmentin. Neither worked as well as Augmentin. I cannot tolerate even missing one dose of the antibiotics without a problem. So I prefer the Augmentin to Cipro to preserve my joints.

I guess we are all on the same boat--but I still wonder what it is doing to my body--as if what has already happened wasn't enough!

I'm a member of the chronic pouchitis club too.

Hi all,
Another member of the chronic pouchitis club here.
Kym, I've been on cipro daily for over two years. Life was hell before I started on it. I've had good luck alternating with the antibiotic Xifaxan lately. It is meant for travelers diarrhea and works only on the gut instead of the whole body, which is what cipro does. I am hesitant to say it but I almost do better on it than with the cipro lately.

Donna, I'm taking 14 drops of opium tincture 7 times a day to exist, and no negative side effects that I am aware of. My doctor still tells me this is a reasonable level of use. I guess I'm saying you shouldn't feel like an addict. I'm wondering what the percocet does for you?

Kym, you might try the opium, it really slows things down and takes away those horrible pouchitis symptoms for me, and sounds like it works for Donna as well.

I've had chronic pouchitis since my takedown almost five years ago. I have tried many things and have settled on the following: rotation of five different antibiotics, taking them for two weeks each. Cipro, 500 mg twice per day, Flagyl, 400 mg twice per day, Xifaxan, 400 mg three times per day, tetracycline, 500 mgs twice per day, and Augmentin, 500/125 mg twice per day. After each two week period, I go as long as I can without an antibiotic to give my body a rest, usually four to fourteen days. I can't seem to get beyond that. In addition I take the stronger Culturelle everyday, as far apart of the antibiotics. If I get some bleeding, I suspect cuffitis and use a half bottle of corticosteroid enema or a 25 mg suppository which is immediately effective. For diet I avoid or minimize fats and sugar and take garlic and omega-3 everyday. I also use lomatil as needed, two at a time usually before bedtime and before I need to be out for awhile. I know very well what you are going through and have done much research and experimentation on various remedies.

Chronic Pouchitis here too

I was put on long term cipro and flagyl and ended up with pancreatitis so had to stop both. Don't really feel that the VSL#3 is doing much for me either... Immodium is a big staple in my diet! I have an appointment with a nutritionist/herbalist so I am going to see what he has to say and maybe try a more natural approach... we'll see... we are definatly not alone!

Hi everyone:

It is nice to know we aren't alone! I've been on rotating antibiotics for a few months--I try one for two weeks and then switch to another. I can never go more than a day. I tried Xifaxan but it didn't do much good. Cipro and Augmentin have worked the best (I am glad another pereson uses it--I haven't seen it mentioned much).

Coloradoguy: I am glad someone else uses a lot of tincture--I guess I use about 10 drops 4 times a day with supplemental lomotil. The Percocet (just 1/2) lets me sleep a bit longer at night--constipating (in a J-pouch sort of way).

I wonder how people feel about their quality of life--I am about 10 months out from TD. I was talking to a friend tonight and he said, "Why not go back to the ostomy--you were healthy then." I didn't have to take all these meds and I could eat anything. Now I can't eat my favorite foods--fruits and veggies (and great Manine ice cream). I also spend way too much time on the potty. (but I get a lot of reading done).

Does anyone else every think about going back to an ostomy?

Yes, I do. However, and this is obviously a matter of personal choice, I would really prefer not to - primarily down to body image issues but also because I could do without taking months out of work.