What are some of you guys doing if you are not getting much relief from your chronic pouchitis? I've read many of your posts and it seesm for lots only the edge is take off. Proctofoam worked for awhile 1 dosage nightly with pentasa 3x a day. Added Xifaxan 2 weeks ago 200mg 3x a day, a little better now down to 1 a day. Flagyl not an option (tingling issues that come and go??) and Cipro, scary. Did the VLS3. Any of you have any relief from entocort and steroid enemas? Steroids the only thing that worked when I had UC and the reason I got the j-pouch in the first place! It NEVER crossed my mind that I would end up with chronic pouchitis. I also suffer from styes on the eyelids that come and go, guessing from inflammation.
I didn't intend for this to be so long. Many on this site have stuggled long and hard and finally got relief on removing the pouch, which I'm thinking about more and more. I tried so many things before the j-pouch and lost years of my life and the same seems to be happening now. How far and how much are you guys (chronic pouchers) willing to go through before doing what we all fear? Any thoughts or insights are much appreciated.

Thanks
gmarie

Hi,
Sounds like you and I are in the same boat. I am currentley on Cipro. Have been off and on for about two years now. I am also using steroid suppositories for a possible stricture. Due to see my GI the 26th for that. In the past 3 years I have used all kinds of antiobiotics. Some work for a few days some none at all. The Cipro has worked the best but still have problems.The job I work at I am on my feet all day and it can sometimes almost be impossible with a bad flare. I told my GI the last time I saw him I wanted the bag back. He said we may have to but lets try a few more things first. I just wonder what all these antibiotics are doing to my body. I two have not styes now(have had in the past though) but risens in 3 differant places. When I want the bag back I think well Marie you are asking for trouble but Im not happy the way I am now. Don't think I helped you but thanks for allowing me to vent also.
Marie

Antibiotics are the only thing that works for my chronic pouchitis. Endocort and proctofoam have worked to some degree but the pouchitis always comes back if i'm just on the steriod. i've had pouchitis on and off for 8 years and the cipro is becoming less effective everytime i'm on it. I now try to rotate between cipro and xifaxin to keep it under control.

Have you considered Augmentin as an alternative antibiotic. It works quite well for me.

Thanks folks for your thougths. Keithpouch-do you have chronic pouchitis too? What dosage of Augmentin are you on? What are the side effects.

Thanks gmarie

Hi,

Yes I have chronic pouchitis! I had surgery a year ago and have been on antibitoics since January. Mainly Cipro 250mg to 1000mg. Whenever I tried to decrease the dosage, I would flare up. So then I this past month I switched to Augmentin. It works quite well! At first it made me gassy, but then after a week or so things settled down and I felt good. I am taking 875mg 2x a day. My GI told me that Diarehea (yes Diarehea!) is a side effect and if it became severe I should stop ASAP. Otherwise, it is very safe to take. I will soon start to taper off and see what happens???

Thankfully the pouchitis keep things under control.

If and when you get your diarrhea settled down a bit...and the pouchitis goes into a bit of remission...

You might want to try a probiotic like VSL#3
or Culturelle. Take the probiotic a few hours from the antibiotic.

I have done this and have not had to have any antibiotics for over a year and a half. I take one Culturelle each morning and one DanActive in the evenings.

The following things seem to affect my chances of getting pouchitis. Are the rest of you the same?[LIST]Increase activity, exposure to people who are sick, stress, food that I eat, lack of rest. I teach and when I work the pouchitis is ALWAYS worse. That is why I drink ensure 2x a day instead of eating. Otherwise I would have to teach from the toilet.

please try the breathing exercise called Pranayam. it is the technique of forcefully trowing out air after breathing in ( kapalbarthi) you can get the detail in any web site on yoga. it has help me stay out of antibiotic for about an year.

quote:

i've been on cipro daily for 7 years, very long term. about 1 year ago it stopped working, so now i'm on cipro and flagyl and have things under control. my docs tell me antibiotics are better than the alternatives and if they are working then stick to them until it becomes clear of a surgical or more invasive treatment. problem now is i have developed fissures and they are painful but not pouchitis related just IBD related. If antibiotics are all you use then its not that bad.

My husband has been on antibiotics pretty much ever since his takedown for chronic pouchitis over a year ago. (He also has cuffitis so uses hydrocortisone suppositories). Flagyl worked best but he got the parasthesias (tingling in fingers) and it sadly led to permanent nerve damage. Cipro works in high doses but in high doses he gets the joint and tendon issues. He tried Xifaxin for a while and was up to 12 pills/day (!) - worked at first then stopped. Now he alternates every two weeks between 500 mg daily of Cipro and a new antibiotic, Alinia. It reduces symptoms from 20 or so BMs/day without antibiotics to about 8-10. Still not ideal, esp. as he gets up 1-2 times/night. He also has major urgency issues which affect us when we are out, and still hasn't been able to return to work (2.5 years now). His doc said he has many patients on antibiotics long-term, one or two for like 20 years! We are actually planning a consult with Dr. Dana Launer re: the possibility of switching to a k-pouch, or to see if he has any other ideas, options, etc. I guess everyone has to see what works for him/her and what they can live with. He has tried the VSL and tried Remicade and other drugs like that when he had UC. So we are not very optimistic at this point. But others seem to improve with minor changes in diet, probiotocs, etc. A lot of it is trial and error as we are all so different. Good luck to everyone!!

I've had pouchitis for 8 years and i'm only 17! I tried the antibiotics and they worked okay for about five, six years. Then everything fell appart and i've been in the hospital three time in six months and have done steroids, enemas, immurian (think i'm allergic to), flagyl,cipro and now i'm on NG Feeds and Rhemicade. still on flagyl and immodium can be my life. I don't wasnt the bag though because mine got blocked three times a week and ended up in the er and i ate all of the right things. I think if i just hang in there some new treatments will come out and it will be all good.

Problem with the pouchitis is that it surely is a pain in the lower parts.

my rheumatologist put me on methotrexate for my psoriasis.after a weeek I stoped taking all my meds for the pouchitis. at first its hard to believe,but now its 3 weeks. Im still on diphenoxylate for the diarrhea.may be this can help. I suffered for a year, thanks to everyone on this site for all your info.I had my total colectomy with the j pouch replacement in 1995,no problems until sept 2006.the methotrexate has brought me from death to life.

I was on Methotextrate as a combo with Remicade when I was fighting UC. I had to have a blood test every month due to being on methotextrate. I think it had something to do with the liver.
It did help my skin a lot.
David