I've been suffering from chronic, recurrent pouchitis for about a year now and have tried several antibiotics and combinations of antibiotics (Cipro, Flagyl, Rifaximin, Pentasa, Levaquin) and they seem to work for a couple weeks/months, but then I flare up again. I was scoped a few months back and they found ulcers in my pouch, but ruled out the possibility of Chron's. My doctor just prescribed Entocort - which I believe is a corticosteroid. Has anyone else tried this? Is this pretty much the last antibiotic option? I am scared to death of having to get a stoma again and will try absolutely anything possible to keep my pouch.

I also think I should try some meds for anxiety/mild depression, as this chronic situation is really starting to wear me down. Any suggestions for what might help?

KLK, you are right, entocort is a steroid but it is not a antibiotic. It will definately help with inflammation but my understanding isn't usually prescribed for pouchitis. My question to you is do you have cuffitis? I take entocort 3 (3mg capsules along with cortisone sups) to help with my cuffitis symptoms when I am in a flare. Not to say that it will not help with your condition but maybe your doc is trying something new for you? The good thing is that only 10% of it goes into the bloodstream limiting the side effect of taking a steroid. By the way it works well for my cuffitis. Good Luck Scott Mc

What is the difference between pouchitis and cuffitis?

KLK,
Entocort worked well for my flares. Like you, I have gone through many drugs. But this one works! I felt better within a few days. Arthur

Have you tried taking probiotics immediately after you cease the antibiotic treatment? That may work to keep you in remission.

Pouchitis is inflammation of the ileal pouch.

Cuffitis is inflammation of the retained rectal cuff.

Two different things with two different treatment strategies.

Here is a link of everything you wanted to know but forgot to ask:
http://usagiedu.com/articles/pouch06/pouch06.pdf

Jan

my doctor gave me entocort, but it doesnt seem to work for me though. to me, its more like an additional drug i have to take as part of a routine. lol.

entocort is a type of steroid, but definitely much lesser side effects than prednisolone. most doctors will use it as a maintenance drug to keep the condition under remission. it is often used with pentasa.

hmms. im not an expert in this whole matter. im just offering my views and from what i know about it (: do correct me if im wrong.

Dear KLK,

Entocort is a corticosteroid which, in contrast to the "old" Prednison, has a mainly local effect, and has therefore lower side effects. I also have chronic pouchitis and I'm using it since 8 years now in a 6 mg dosage. It can be possible that you only need it for a while, though I tried to lower the dosage and got relapses of the pouchits again. Although side effects are low, you can get them: for example I got acne and a little moon face. It is also advised to make a yearly Dexa scan to control your bone density, because of the risk of osteoporoses when taking corticosteroids, even with Entocort. It is also possible to use Entocort enema's instead of Entocort capsules. You have to know that this medicine is not the last option before pouch removal. 5-ASA- agents could funtion in a subset of chronic pouchitis patients as well and have no major side effects. A next step after Entocort/ 5-ASA would be an immunosupressive agent like Purinethol (=6-mercaptopurin), also Remicade can be tried when immunosupressive therapy isn't working. Before a definitive pouch removal, a temporary disconnection of the pouch from the ileum with a ileostomy could also be a possibility. The temporary disconnection could have a good influence on the pouch. Any way, there are still some options to go, I think you have a great chance doing well on Entocort. I would read the link of Jan too: here is everything in it we have to know about j-pouch diseases!
Greetings and succes, Roger!