Hi, has anyone tried taking Asacol for their pouchitis? I've had to stop Remicade treatment and my options are slim now and I asked my doctor to try the asacol, because I was curious and because it's worked for my colitis in the past, prior to the pouch. So far I don't notice any differences, except for feeling tired and headaches, but I'm wondering if there's really any point in continuing them. If I don't find a new drug soon, then it's looking like removing the pouch is my only option. Please help!

I tried just about everything to help get rid of my pouchitis during the 8 years that I had my j-pouch and Asacol did absolutely nothing for me. Neither did Cortifoam Mesalamine or any of the other topical or oral UC treatments, but that's just me.

I've never tried Remicade so can't comment on it's efficiency. The only thing that actually helped me was a combination of high dose Flagyl and Cipro to bring me into remission. I hated taking them because they actually made me feel even sicker than the pouchitis did, but they did clear it up. After which I was able to maintain remission with probiotics (VSL#3 in my case).

I'm so sorry that you are running out of options. Hopefully you'll have better luck with the UC drugs than I did.

Take care and keep us posted.

Shell

Tinat--I'm up in Thunder Bay. But I had my surgery at Mt. Sinai in Toronto about two and a half years ago. Since then, pouchitis has been an issue for me most of the time. My doctor here is suggesting Remicade.
But I'm giving Salofalk (aminosalicylic acid) enemas a trial run first.
After about six weeks, it seems to have knocked down the back pain caused by pouchitis,
but most of the other symptoms are still there.
I'm desperate to avoid having the pouch removed.
What kind of side effects did you suffer from with Remicade ?
Gary

Thank you Shell and Gary, I'm thinking that the asacol isn't doing much for me except for giving me headaches, so I might just stop it and stick to the cipro and 5 ASA suppositories. I don't like starting a couple of new things and not knowing what exactly is working. So the suppositories were reintroduced as well as the asacol, so I'll see how the suppositories work on their own with the cipro.

The remicade for me did not work, I've only been for 3 treatments and my symptoms never really went away. My joints became very sore and with the 3rd treatment, I had a very bad reaction, so I guess my body was trying to tell me something. But I do hear that people with Crohns disease have better success than those who had Colitis and I had Colitis. It's just frustrating that there aren't too many options aside from removing the pouch.

Gary, your doctors are saying you might need to remove the pouch? Are you seeing a doctor in Toronto or Thunder Bay? Have you tried Cipro? That's helped me a lot, but I've become immune to it now.

Tinat--My gastroenterologist is in Thunder Bay. He's tried me separately on Flagyl and Cipro but I had nerve damage from both so I can't take them anymore. He's involved in a new Remicade infusion clinic that's just started up here. Having heard about side effects, I would have to be dragged there in chains.
I've seen some talk about Rifaximin being effective for some people but it's not available in Canada yet.

Best of luck with the Cipro and 5ASA !

Gary

Thanks Gary and good luck to you too. What are you taking now? I was the same way with the Remicade, but you never know, it could actually work for you. I have a friend who is feeling great and like normal from the Remicade, so it's worth a shot....literally.
I've heard about the Rifaximin also, my doctor said he can get in for me to try, but it costs $250 for one course, so 2 weeks, I'm still thinking about it.
Keep me posted on what you decide to do. Have a good day!
Tina

Tina.....I'm just taking the Salofalk enemas now.
I expect to stay on them for another couple months anyway. Then we'll reassess things with the doc.
Cheers.

I tried Remicade for my UC. While it didn't help, it didn't give me any side effects either.

I respond well to asacol, oral and supps. I also respond almost as well to things like prednisone (usually supps when needed), but nothing works as good as asacol. I get little if any comfort from flagyl, and virtually none from cipro. I respond to the exact same meds I did for my UC, as I do today for my pouchitis. VSL#3 kills my intestinal tract, lighter probiotics work well, but it doesn't make a difference if I take them or not.