Hello-

I'm looking for some advice/words of wisdom/help-

Had 2 step procedure in 2001 and surgery this past summer for adhesions.
I've not felt "normal" since initial surgery, of course I never expected to. Lately I've been experiencing of and on blood in my stool and frequent pain while going. The kind like I used to experience with UC pre-surgery. I guess it's been happening of and on for a very long time. I say "I guess" because when you live with something for long enough, you forget it's not normal. Also, it'll happen, go away, and I don't think about it. Which brings me here now. I guess I'm just wondering how normal this is and what could be causing it. It doesn't seem to matter what I eat (never did). I've experimented with the whole fiber thing and it just seems to bother me if I take in more than normal, so I stay away from overly fibrous foods. (I'm talking the 13 grams of fiber cereals, etc.)
It seems I eat, drink, then get bloated and spend way too much time in the bathroom for each trip (I still go on average 12 times a day). I get that whole spasm thing going on when I go and it hurts. It's not like that every time I go, but it's gotten more frequent.
Sorry to ramble on, but I'd appreciate any feedback on this, even if it's to tell me I'm crazy.
Thanks alot-Becky

No, not normal. What you describe sounds like cuffitis, an inflammation of the retained rectal cuff. Basically, UC of the small rim of rectal tissue. Bleeding is almost always associated with cuffitis. The good news is that there's treatment. The standard treatment is mesalamine or hydrocortisone suppositories and work quite well for most of us.

Jan

Thank You Jan for replying.

I won't take up time asking questions about cuffitis. I'll search and learn about it. My question now is-do you think I need to contact my Dr. or will this eventually "go away" ?
I guess I always feel like whenever something's not quite right I'm "bothering" people. That's the reason I started here at this forum to see what anyone thought. I know I just recently read in a previous post that you experienced cuffitis. Is it serious enough to be concerned or is it like dealing with bothersome numerous bathroom trips? I'm not trying to downplay any of this, just want to know what course to take....


Thanks for listening....Becky

Becky - I don't believe cuffitis will go away on its own. But it can be treated with meds. I think Jan takes asulfidine to keep it at bay. Initially, you may be presribed suppositories to get it under control.

Good luck and it's nice to see your face again.

kathy

It can go away just the same as UC can go away. It is a relapse of IBD and will also have the same unpredictable course. While it probably does not make a huge difference in the grand scheme of things because this is so rare, but there have been some studies that show that maintenance treatment for IBD can reduce the cancer risk. There is a slight cancer risk for that rectal cuff.

I tried to ignore mine for a long time too, because there were better and worse periods, but it was not consistently really bad. But, I will tell you that it was consistently much better with treatment.

Jan

Hello-

Just an update. I finally went to my Dr. on Wednesday. Luckily, I didn't eat anything prior because he did a scope and pumped air in the pouch (Quite uncomfortable). He thought it looked good in there except for about 10 small white ulcers, which he said were probably from overuse of the pouch. Overuse??? I don't get that. Anyway, are the ulcers anything to be concerned about over time? He didn't seem too concerned, so I'll assume not.

He put me on Cipro and Robinul Forte (spelling?)
to try to calm things down. I go back in 3 weeks. Hopefully this does the trick. I still don't know exactly what the problem is though. He didn't say anything about cuffitis. I guess I'll just wait and see and drink tons of fluid to deal with the dry mouth caused by the medicines!!! Thanks for listening.

Becky

Well, that's a first, overuse?! Doesn't make sense. It is not as if you can turn it off and use something else when you have "used it enough." Perhaps he meant that it was due to frequency. You may want to ask where the ulcers were. Typically, they are near the anastomosis (where the pouch and anus are joined). However, you can have ulcers associated with pouchitis, cuffitis, and Crohn's disease of the pouch. Antibiotics are typically prescribed for pouchitis. The robinule forte is an antispasmotic to help relax your gut.

Jan