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John95
Okay guys, well I just got back from my pouchoscopy this morning and these were the results:

"Normal appearing pouch with a small ulcer about 7mm in size at the anastomosis. Moderate erthyema and friability at the rectal cuff.

Impressions: Cuffitis. Anastomotic pouch ulcer."

This is the first time I've been diagnosed with cuffitis, and I'm concerned about the treatment options. Seven years ago, I had been taking Asacol at the highest dose for about three to four months when I developed pericarditis. Therefore, we've always been suspicious that the high-dose Asacol caused it. Does this mean I shouldn't use Canasa suppositories?

Furthermore, I've told my doctors since my surgery four years ago that steroids are not a treatment option as far as I'm concerned. Not only did they give me osteopenia at the age of 23, but they also cause me terrible acne breakouts which I'm just not willing to deal with. It's very depressing to deal with that, as I don't want to leave the house or do anything because I look so awful. Even worse, the acne I get from steroids leaves scars, so there's just no way I'm taking them. It doesn't matter whether it is in oral, enema, or suppository form.

So I really don't know what to do. I'd really appreciate any advice you might have. Thank you.

Replies sorted oldest to newest

J jeaneMember
Wow..this post hit home for me. I too have cuffitis (and pouchitis) and a small anal ulcer at the anastomosis with the same results they put on your report. All the years I was on and off pred caused bad acne for me and the scars from pred acne are much worse than the ones from regular acne. I also have ugly stretch marks on my thighs from the pred too. I am fortunate in that most of these scars appeared on my chin area, where the scars are a bit easier to hide with makeup but I know they are there and it bothers me still. I have honesty never heard of asacol causing pericarditis.

I take canasa suppositories often ( sometimes 2 times a day) to deal with the cuffitis. I would ask your doctor about the possible side effects as I cannot answer that question. I do know the canasa should help heal the cuff but it is often a recurring issue.
J
John95John95Member
Thanks for your reply, jeane. I think some doctors fail to grasp how devastating some of the side effects to a drug like Prednisone can be. To them, it clears up the inflammation and can give some people acne, but that clears up within a month or two of stopping. But we're the ones who have to live with it, and to me, it's far worse than the disease itself.

The weird thing is that I was doing well about a month ago while on Cipro and Bactrim. However, I developed severe joint pains, which my pharmacist thinks is from the Cipro. I've always been able to bring any pouch inflammation under control with antibiotics, which is why I'm suspicious about this being cuffitis.

Can you have cuffitis without bleeding? I've never had any blood.
John95
K kkMember
I have found that I get a different answer for the same problem from different doctors. I didn't have pouchitis until after 10yrs. the ulcers have always been in the same area(part I was told left to connect) so mostly given suppositories to get meds. where it needs to be. Asked one doctor (surgeon) location of ulcer calling it pouchitis and he didn't tell me only answered by saying not signifcant of location. Two yrs. ago gastro told me where and called it cuffitis. I don't know but I am wandering if it was just called that b/c thats the new thing.
Talked to the nurse of first dr. just mentioned and she has never heard of cuffitis but don't know if that means anything. I am not suppose to even have a cuff b/c my surgery was done in 1985. All I know is I continue to suffer and I am tired of getting different answers for the same problem. when I have been told pouchitis I did ache all over like the flu/ no matter what I did had loose stool. I would make sure the doctor you see knows a lot about a J-pouch. The one in town I live does not so I have never seen him.
K

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