Hi I haven't posted in a long time because I haven't been on in a long time. I need help and support. I am flairing with my pouchitis right now and it comes back cronicly like every 3 months. So far I have been on Cipro, Flagyl, and Augmenton. My doctor told me that there is no magical wand to fix it and that there is only one other antibiotic that can be tried. I do not remember the name. It has been hard for me and I am constantly belching even at work and have nausia, stomach cramping even when going to the bathroom plus when eating, I have a distended stomach as well. I need support I do not want to loose my pouch and go back to a illeostomy bag and I already had two bags back in 2005 and I think 2006. Please do not respond to my e-mail address just to the sight and I will try to come back and read posts.

Michie. I used to have a problem with pouchities and cipro was not helping at all. I was at my dentist one day to have a tooth pulled and he prescribed penicellen for infection.
I took the peni and low and behold, the pouchities stopped and the rare times it flares now, I just take my peni. I told my pouch doc about it and he was amased and then told me that peni was origianlly prescribed for pouchities.

Don't know what your Doc would say or recommend but thought it might be worth a shot.

Hope this helps

Dave Thank you for the advice. I may look into it. That is interesting penisilon is used usually for other things I never thought it could be used for Pouchitis. Thanks for your advice I really appreciate it.

I just posted about having a problem with antibiotics not working. I had a year of normal after getting on Humira. And when that stopped working no A/B's would work what did was cycling with Prednisone. Hopefully the right antibiotic will work but if it doesn't you may learn like I did its not that type of flare. Good luck!

Thank you so much for your advice Justin. My doctor pretty much told me that there is nothing left that she can think of. My doctor has one more antibiotic and that is it. My flairs are cronic are yours the same?

quote:

My doctor told me that there is no magical wand to fix it and that there is only one other antibiotic that can be tried.

There is xifaxin and a number of others in addition to the ones mentioned. See this thread:

http://j-pouch.org/eve/forums/...=515108724#515108724

No guarantee that any of them will work of course. I have treated chronic pouchitis successfully rotating cipro & flagyl with xifaxin and augmentin. I have supplemented that with Pentasa and Pepto Bismol chewable tablets as needed and when needed between antibiotic dosages. It has worked for 16 years now. I have no side effects except to have battled a few yeast infections, but I got smart and figured out how to prevent those from recurring.

That is exactly what my doctor told me as well. No magical wand and is rotating my antibiotics as well. Right now I am on Augmentin. My doctor told me that there is only one antibiotic left to try. I have been on Xifaxin I think before and I have been on Cipro and flagyl many times and it does not help me.

You can also try all the UC meds, alone or in combination with antibiotics.

Jan

Thanks for your advice Jan. This has been very hard for me. I have cramping, nausia, urgency to use the bathroom, and belching a lot. I am just misrable and I am on Augmenton, my doctor pretty much told me that there is only one antibiotic left that can be tried. Do you happen to know what VSL# 3 is? Does that help pouchitis?

VSL#3 is a combination probiotic (very expensive- but some insurance will cover the prescrption strength- DS). It is good for pouchitis prevention/maintenance of remission, not so much to induce remission.

For more info, click on the link at thetop of the page.

Jan

Thanks Jan,

I will be seeing my gastro on Monday for an emergency appointment and maybe I will mention that to her and see what she says. Right now I am trying Phillips Colon Health but do not see any difference what so ever. I have been taking it for a long time. Wish me luck at the doctor.

There are many good probiotics to try that have been tested with IBD. Phillips is not one of them. Time to switch to something else if you see no difference. But, just know, you need to get into remission with antibiotics or other meds before relying on probiotics. They are just for sustaining renission, although there are reports of some efficacy with MILD pouchitis.

By the way, have you been tested for C. difficile or CMV pouchitis?

Good luck,

Jan

No I have not. That is weird because my doctor told me that probiotics can help. I will talk to the doctor about what is the best option to do. Maybe that might not be such a bad idea to test for that. More then likely I will be having another pouchoscopy and then I hope the doctor will come up with what to do about it that doesn't involve surgury to remove the pouch. Thanks again for your advice Jan.