quote:

Could it be the dreaded pouchitis?

It could be bacterial overgrowth and pouchitis. I have had pouchitis for 18 years (in my case it's chronic, but treatable and "dreaded" only when I go off antibiotics, in which case it goes from "simmering" to "ucontrollable" in less than 10 days).

Due to the passage of time since takedown, I would tend to think it's not a spasmodic pouch.

The cipro should help. If it doesn't, you can try flagyl, xifaxin and augmentin, which are all effective antibiotics in treating pouchitis.

Are you constantly on antibiotics to treat it? I take it that they would cycle them?

How is your quality of life 18 years on?

quote:

Are you constantly on antibiotics to treat it? I take it that they would cycle them?

How is your quality of life 18 years on?

I have cycled them for 18 years continuously. Quality of life has been excellent except for the handful of occasions when I have gone cold turkey off antibiotics, and tried things like VSL 3 and other probiotics and other futile therapies. All were experiments which ended in harsh and dramatic failure after a week. However, if you saw my latest scope pics, you would not think my quality of life is that great. But it is. I have no complaints or regrets, other than that I cannot get off antibiotics.

I was able to control pouchitis with just VSL (maximum dose: 4 DS packets/day) for about a year. Since then I've been on Cipro, once we figured out that I was fine until I stopped it. I may start to cycle with other antibiotics if Cipro stops working well, but I seem to tolerate the Cipro very well.

To echo CT, there's nothing dreaded about pouchitis. Find a treatment that works and you'll almost certainly be fine. Keep looking until you find what works. I sleep through the night, do martial arts, go to the gym, and travel on airplanes without anxiety. None of that went very well until I found a treatment that worked.

So glad you found this forum. It is an incredible blessing!

My history pretty much mirrors yours, including the approximate age time line, except that I am a good bit older than you now.

I believe I've been walking around with undiagnosed pouchitis for 13 years. I found this forum and the right doc through this forum. Within less than two weeks I was diagnosed with pouchitis and put on Flagyl. My symptoms nearly disappeared after 16 hours on the drug.

Last week I had some issues tolerating the Flagyl and decreased it. I am back up to the prescribed dose, per doc orders, and I seem fine. I don't know, last week could have just been my body going into a deep rest after so many years.

Long story short, though, it could very well be an "easy" fix. I know, none of this is easy....But I am proof that it is possible to go from years of progressively disabling symptoms to a very satisfactory normalcy in a short period of time.

It is true, some do not respond as quickly as I did to treatment or it could take trying a few different treatments to see what works for you. But, I agree with Scott, once you find what works for your body, pouchitis can be very manageable.

I am glad you found this forum quickly and haven't lost years of your life like I have. I hope you find a treatment that works for you very soon and you are back to living your life to the fullest.

Keep us posted! I am truly interested to hear how things go and I can say with full confidence that the others in here feel the same way. Ask lots of questions as you go. I've asked tons and the people in here are incredibly knowledgeable.

Best wishes!

Many thanks to all that responded once again, some heart felt replies from those who've experienced similar problems to me! Thank you all


Had my pouchoscpy on Friday and I'm relieved to say I only had mild inflammation and no prolapse.

He put me on a short dose of flajyl and loperamide. I've now developed a new problem which is spasms in my backpasage after releasing my pouch.

Any ideas how to soothe this, the only method I've found so far has been sitting in shallow water for 15 minutes?

Glad you have found some relief.

I have not had spasm issues, but I just read a post by CTBarrister in the last day or so about treatment for this. If he doesn't reply soon, you might want to do a search on his recent posts.

I hope you continue to improve!