Hi - this is the 1st time I have had to come to get some help!
I had UC and had my J pouch surgery in 11/05 and TD in 12/05. Everything went great for a short time and then I got the 1st of pouchitis and confirmed with the scoping. I have since had pouchitis non stop since, starting 1st with Flagyl for 3yrs and getting neorpathy in my feet and hands; then going to Cipro. Cipro no longer works I also tried VSL#3DS and back to Cipro. So for 3 1/2 yrs I have had chronic diarrhea and stomach aches. I am ready to say forget the J pouch and get the Ileo and live life again, but Iam afraid.
I am also wondering what the K pouch is all about?
I need some advise, I feel like I am going this alone.

Thanks,
Jan C

I am so sorry to hear that things aren't going well for you with the pouch and I understand how frustrating this can be as I have been fighting pouchitis for about a year and a half. My doctor finally took me off Flagyl because of the neorpathy risks and gave me some probiotics called TuZen. they are new here in Canada and they are the only ones that seem to be working for me. I too tried the VSL#3 and didn't notice any improvements.

I know there are some people here that have gone to a temp ileo to try to give the pouch a rest. If it were me, I would try all my options before totally giving up on the pouch.

Thanks Christine I will keep that in mind maybe there's something out there that will get rid of pouchitis.
Jan C

I have chronic pouchtitis for 6 years. I got into remission with Pentasa first for about a 2 years and then another time for about a year. When that stop working I was switched to xifacan. It has been over 2 years now and pouchitis free (all confirmed by scope). I have choosen to stay on a low does of xifacan as maintance. If things start acting up I will pop some Pentassa. I also have noticed a decrease in bowel movements with the new VSL#D. There are other things to try.
PS When I stop meds for a long period of time it always comes back. My current combo is 2 pills xifacan 2 times a day and in the middle 1 packet of VSL#D. This is from weaning down from a mild attack cause I stopped my meds for a while after my gall bladder surgery, I started with Pentassa 2 big pils 4x a day, xifican 2 pills 3 x a day, 1 canassa at night. VSL#3D once a day. Did this for 3 weeks. Only needed the cansassa for 3 nights-thankfully, I hate sticking that stuff up.
I hope you find the combo that works.
Susan

This message has been edited. Last edited by: AllyKat,

Hello,

I had some major JP issues and had to have mine diverted to a temp-ileo. My issues were more around Cuffitis, Adhesions, and Strictures but Pouchitis was an ugly by-product of those. I took Flagyl and Cipro for years to keep it under control but over time they became less effective. I was put on Alinia which is a newer med for Pouchitis. This was given to me by a Cleveland Clinic GI. I did notice some improvement with it, but unfortunately the other meds (Endocort, Cortifoam, etc…) didn’t work for my Cuffitis issue so I threw in the towel.

You may want to mention Alinia to your doctor. If you problems are centered around Pouchitis it may work for you. Another good thing about Alinia is that it doesn't have the side-effects Flagyl has.

Good luck!

I am one of the rare (so I am told) people for whom diversion did not work. I initially kept my pouch in and got a diverting end ileo, but I actually got worse - developed new symptoms and didn't get rid of any of the old ones. 18 months after the diversion surgery I had my pouch out.

Once hte pouch came out, I was healthy and happy. My end ileo is a dream compared to the temp one. I hardly even know I have it any more. It is just a routine part of my life. I change my appliance every three days, other than that my life is no different than any one else's.

Since the removal surgery, I've been hiking, kayaking, swimming, traveling, had one baby and am currently pregnant with my second. The ileo definitely gave me a freedom I didn't have in the 3 1/2 years with my pouch and chronic pouchitis.

I take no drugs, eat what I want and in general am just a healthy, happy 30 something. I hope whatever you decide to do brings you the same kind of success. Please let me know if you have questions.

As for the K pouch, that is short for Kock pouch. It is a continent ostomy which means you don't wear an appliance over the stoma (which is flush to the skin), just a bandage. There is a valve at the internal base of the stoma that keeps the stool inside a reservoir like the j-pouch. You catheterize the stoma several times a day to empty the reservoir. You may also hear people reference a BCIR - same concept jsut a different technical procedure.

I opted for a traditional ostomy for two primary reasons. One, you can still get pouchitis with the K-pouch or BCIR. Since that was my problem, I couldn't see taking a chance knowing I was already prone to the issue. Second, k-pouches are not as widely done as ostomies (BCIRs even less so) and I love to travel. I didn't want to worry if something happened while I was out of state, or out of the country and I couldn't find a dr who knew what I had. I also didn't want to have to travel for treatment if I had complications. Though I live in a major medical area (Boston) I was worried about if I needed specialized care. At least I know any where I travel people will know what an ostomy is and we should be able to find a dr who could help.

The body image thing wasn't an issue for me, though, since I was already married to wonderful man who fully supported my choice for an ostomy. For some people the K-pouch is a great solution, it just wasn't for me.

Thanks JillM, I have a terrific husband that supports me getting a permenent ileo. He is tired of me being sick all the time and we want to travel and to know I will feel good. Right now it is anyone's quess, same as UC. It still doesn't take the scare out of getting rid of the j pouch.
Jan C

Hello,..just curious if youve tried xifaxan and Rowasa enemas together,..they both keep my pouchitis under control.

Just one thing, before scrapping the pouch, make sure this is just pouchitis. It is possible that this is C. difficile and that is why the standard treatments are not working. Have you had any toxin tests?

Jan

Jan
My son had a j pouch that failed due to abscess that was undetected with any test for 10 months.
He went to ileo for 1 year knowing when he was healthy and off narcotics he would try k pouch. He did and it was great for a year, He had a valve slip and it was repaied. That was a year ago. He is great and loves his K pouch. He said he would not have wanted another j pouch. He has freedom and confidence and self esteem and a great body image. he is 21.
We live 140 miles fromn a dr who can manage his k pouch, the valve problems are being perfected and if you go to the best dr to have your j pouch removed who knows k pouch surgery he may be able to do it right then, if not a temp ileo until you are healed and then ypu can decide if you want to try it. My son was determined.He had 9 surgeries in 3.5 years,Anything is a possibility.
I have had a j pouch for 20 yrs and I am great.
Jan is right though, there are tests you may not have had .
There aren't any drs in idaho who manage or create k pouches.Dr Dana Launer in La Jolla , CA is probably the closest. He is skilled, and has vast experience. Many members are patients of his. Great results.
Good luck and I hope you get resolve soon.