Hi Everyone! It has been awhile since i have posted. Just looking for some advice with pouchitis. It will be a year jan 27 since the last stage of my surgery. i was good for a couple of months and now i have had chronic pouchitis ever since. I went for a scope 2 months ago and there was just a little bit of ulceration in the rectum, thought i was doing good, still on the cipro though. My gi said if i was starting to feel good for 6 weeks to go to one cipro. well i did that went in for a scope the other day and now it is all thru out my pouch, didn't look good at all. I was planning on starting school in feb to become a nurse but my gi specialist and surgeon said no. Now i am down with that and am now on cipro and flagyl. I am getting married in sept and really hope this all gets better but doesn't seem to be going that way.......do i go back to the ostomy??please if anyone can give me advice i would really appreciate it. I have run into so many people who have had the same surgery and they all have chronic pouchitis?
thanks for all your help
lindsay

Although I am a newbie (3 months), I would still give your pouch more time before going back to an ostomy. It usually takes a year or longer to for your body to get used to a new way of digesting. Everyone is different.

My only advice is remain positive. Being on Cipro and flagyl makes sense, but maybe you need a second opinion. If you GI is not too familiar with pouches, maybe you need to do some traveling and find a GI that specializes in IBD, hence knows tons about Jpouch's. Even if your GI is wonderful, sometimes a different perspective helps.

Also, are you taking VSL3 or something similar?

Best of Luck!

Keith

As Keith said, you're very early to be considering throwing in the towel. Try a course of antibiotics again and try a good probiotic like VSL once you stop - and assuming it's brought you into remission (it wasn't clear from your post whether the pouchitis appeared after you'd stopped cipro or when you were on it). If cipro doesn't work then you could try another antibiotic.

I'm surprised you were told by your surgeon and GI you couldn't go to medical school in February. How severe is your pouchitis because most of us with chronic pouchitis are able to hold down normal jobs?

There are a variety of different medications to try for pouchitis. Sometimes you need a combination, including steroids to really kick it in the pants. Chronic pouchitis is more of challenge and it takes persistence to find what works for you. This article outlines the various therapies, along with other diagnoses of pouch disease:

http://usagiedu.com/articles/pouch06/pouch06.pdf

Jan

Hi Everyone,
Thankyou for all your responses. Much appreciated. Mike as for the school thing my GI did a scope 2 months ago and then another one in about 3 weeks ago. There were ulcers all thru out my pouch, which didn't appear on the scope before, and this happened while i was on antibiotics. My hemaglobin keeps dropping to 80 and my iron is at 1. They say I am not stable enough to start school(as in my health) and should wait to start my nursing school as it is a very intense program. I also have arthritis and really bad joints from the long term use of prednisone. I have tried probiotics but my pouchitis came back very quickly. So i am still on Flagyl and cipro, and hoping things will start to clear up soon. I am starting to get symptoms while being on the flagyl and cipro. I will keep my head up and think positive. Thanks for everyones input. I really appreciate it.
Thanks again
lindsay

Linday, you really are having a difficult time. I'm sorry to hear about that. I hope the flagyl and cipro combination do continue to work although if your blood count and iron levels are still dropping even whilst you're on them then it may be you do need to experiment with something else. There are other antibiotics that may be worth trying. Alternatively, you might think about some Crohns treatments (although I note you've already suffered from past use of Prednisilone so this is unlikely to be at the top of your alternatives list). One person (Dave) has posted with positive results from use of Naltrexone which could potentially be on your options list.

I hope that's of some help anyway. I appreciate you're probably pretty fed up of people suggesting alternative options but I do hope you can get on top of this and I wish you all the best.

Lindsay,
I went back and looked at one of your previous posts and saw that spasams and urgency were your main symptoms. I struggled with those for almost two years until I tried Tincture of Opium. It has taken care of those two symptoms and been a miracle for me. It works almost immediately. For another antibiotic try Xifaxan. Cipro was all that worked for me at first but now Xifaxan seems better.

Thanks everyone for all your input. i have taken note of all of your ideas and will definatley give them a try. i just want to feel normal again, but i just keep saying it could be worse!!! Thanks again, much appreciated
lindsay

Just got on here and saw your post from a few months ago...I have been in a similar situation. I just got married 2 weeks ago and am in my last semester of nursing school! It can be done! I was so so sick for a lot of school before I had the surgery. I made it through! I have had some problems along the way, but don't give up! It gets much better.