How about mesalamine suppositories and/or antibiotics? It sounds like you have both pouchitis and cuffitis. It can take a month or more for these to come under control, so patience is also required.

Jan

I finished 10 days of flagyl a few days before my biopsies were obtained. My GI said no pouchitis just active UC. Confusing...

I don't get it. If you have ulcers in your pouch, that is a form of pouchitis. You don't need inflammation all over. I would think a longer course of Flagyl is in order, plus treatment for the cuffitis. If the HC enema is not helpful, then mesalamine should be tried. Oral colitis meds can be used too.

Did your symptoms improve while on Flagyl?

Jan

Angela,

Magically the antibiotics always seem to help my cuffitis. I agree with Jan in that ulcers in your pouch are a form of pouchitis. I have never heard of the term 'colitis' used for inflammation in the jpouch, but have heard of residual colitis in the cuff (connection) and ATZ (anal transitional zone) as I also have this issue. Typically, anal suppositories or cortifoam is used for the cuffitis and antibiotics are use for pouchitis, and as Jan indicated, UC drugs can also be used.

I looked through old discussions and found someone that was told same thing as me. Active uc, no pouchitis, ulcers throughout rectum, pouch and above .The thread didn't continue so no end results but gave me some good questions for my GI and I will be getting a second opinion. Lots of responses said sounds like cd.

This is the first mention of ulcers above the pouch. THAT is something different and could point to a Crohn's diagnosis, but is not a sure thing. Have you been taking any NSAIDs? That could be a factor too. How does the rest of your gut look? Have you had an upper endoscopy to check?

Here is a link to one of the best articles describing the various diseases of the pouch. Perhaps it can help you make sense of this:

http://www.dept-med.pitt.edu/g...eadings/shen2005.pdf

Jan

Angela,

I just want to add on here to Jan's post. I have never had ulcers diagnosed above my pouch (not true ulcers in my pouch to this point). I have not had a complete upper endoscopy. My surgeon and GI have both been able to look above my pouch though to check for inflammation.

I am getting scoped this Wednesday, and depending on what is found in my pouch and anal area, an upper endoscopy may be suggested. I am not thoroughly convinced I am not dealing with peri-anal crohn's disease with all the issues I have had since takedown in my cuff and ATZ, in addition to my stricture at the anastomosis. I am hoping I may get some more answers at this scope and can share with the board as there are not many people posting here with the issues you an I have been having.

Thanks ladies. I have had my jpouch for 10 years and have only started having problems the last couple years. I appreciate your help. I will let you know what I learn. Best of luck with your scope Wednesday, Jeane!

Thanks Ang. I'll report back my findings and we can compare notes. I'm also always interested in Jan's feedback as well.

I attached a picture of pathology report. I am getting a second opinion. So annoyed....

I wouldn't get too worked up over the terminology in the path report, as it is fairly common. The pathologist is just reporting what he sees and often the GI does not have detailed labeling. It probably stated that it was obtained from sigmoidoscopy biopsies or something. It is also common for the pouch to develop rectal-type tissue changes over time, so under a microscope it looks colonic or rectal.

The main thing is that it appears you have pouchitis and cuffitis, not so good news. No dysplasia, so good news. Go from there.

Jan

Ang,

Your reporting is a bit different than what I get, but the result is the same...pouchitis and cuffitis as Jan indicated. Hopefully they have started you on some treatment and you should get rescoped after treatment. I never have pouchitis symptoms (for them most part) even though I always have some inflammation in my pouch at scope time. My typical treatment is cipro and rectal suppositories (the latter which seems to do nothing but help minimize my constant rectal discomfort).

I have had multiple scopes similar to your results and mine today should be no different. The dysplasia part has me concerned as I have been dealing with chronic cuffitis for two years despite meds and I know I have active ulceration in my anal transitional zone and cuff at all times. I also am concerned what they may find today regarding the narrowing of my anastomosis (hoping they can insert scope). I will report back my scope results after I get them if you would like to compare notes and terminology.

Ang,
I am posting my scope results here fyi. When biopsy results come back I will post. My report and pictures show pouch looks good as well as above pouch. An index finger dilation was performed as i still have a stricture at the anastomosis connection. I have a 1.5 cm ulceration in distal pouch and small ulceration at the proximal pouch adjacent to staple line of pouch limb. Rest of pouch looks normal. Rectal cuff showed mild erythema.
GI thinks the ulceration in the distal Pouch near or along anastomosis is from skin tearing and scar tissue tearing when emptying pouch due to the stricture.

I am a bit concerned about the pouch ulcers as I have never had this reported. I have pretty much managed to stay off sntibiotics most of the time with using rectal suppositories regularly. As you can see, even with these, I still have cuffitis.