Hobbie,

I feel your pain and know how frustrating it can be to be held hostage by your pouch. It sounds like your problem isn't with the pouch itself but the rectum or where it was reconnected. My Doc told me that I had UC all the way to the rectum and that I would still have some decease in the part that was used to reconnect . Therefor flare ups could still occur. I've been on Cipro and Flagyl since my take down in 2002. If I wasn't I wouldn't be able to leave my house. So don't be afraid to take them. If they help it's worth it. I have regular scopes and my pouch always looks great, and I still have a number of problems. I assume you had one done because you said that they ruled out pouchitis? what about internal anal fissures? Did they see anything around the cuff, maybe cuffitis? Who are you seeing at St Marks? I would be following up with a surgeon who actually performs the surgery or a GI who is familiar with the procedure. In the meantime, try the anitbiotics, Cipro & Flagyl, stop eating for 24hrs ( liquids and protein shakes only), take 2 Immodium before bed, try really warm sit baths, and use coconut oil every time you have a bm. Hope this helps!

Thanks Liz for your quick reply.  They seem to think it is not pouchitis and the biopsies were normal.  I remember one doctor once mentioning " a bit of UC possibly remaining". ( cuffitis) . All the scopes have been normal. Steroid enemas have not helped but I am going to investigate the cuffitis possibility again and ask for topical Mesalazine . Have you tried this? Another idea was over growth of pouch bacteria, which is probably why it responds to Cipro.

At present doing a web research on the subject of cuffitis. Will let you know if anything new found :-)

Hobbie, a fair number of us are on Cipro long-term. Since it does the trick for you, regardless of the elusive diagnosis, it seems strange for the doctor to dismiss this (proven) treatment without offering an effective alternative. Long-term Cipro isn't ideal, but it's vastly better than suffering.

Thanks Scott . It has alot to do with the NHS and how it operates here. Ciprofloxacin had some bad press on one or two occasions and the medical establishment are worried about Clostridium difficile infection which can over whelm the system when Cipro is used even for short phases. To me, everything has a risk and a patient has to understand that, but now doctors seem more frightened of the lawyers.

They seem less wary of Flagyl so maybe the way forward for me is to sign some sort of disclaimer with regard to Cipro....

If the docs are more on board with Flagyl, have you tried it? I used to take only Flagyl for my occasional flares, and it worked well without side effects. But over the past year it has become less effective, and my pouchitis symptoms are more chronic. Rotating Cipro, Flagyl and xifaxin seem to be working. I also was very leary of constant Cipro use due to the C. diff risk, as was my GI. 

I do suffer from cuffitis flares and use mesalamine suppositories when there is bleeding or when I feel like there is swelling/irritation near the outlet inside.

Jan

Thank you.  Yes, I have tried Flagyl and it seems as effective as Cipro.  I am not sure if Xifaxin is available in the UK.  I have not heard of this. I will defo try Mesalazine.

In the UK Xifaxan would probably be called rifaxamin (the generic name). It's extremely expensive, at least in the US.

I got better results from Cipro than Flagyl. I don't think most people who stay on Cipro get C. diff, but some sure do.