Read jean's post down a little further on this page titled "for chronic cuffitis sufferers".

Unfortunately, like UC, cuffitis can be resistant to any treatment. People who are unable to live with the chronic symptoms or wait for a spontaneous remission (may or may not happen), generally wind up either having pouch advancement surgery or opt for an ostomy.

There is also the option of systemic therapy, the oral meds used for UC or Remicade and the like.

Jan

what about a cuff scraping? my surgeon eluded to that being an option i believe...

Not as simple as it sounds. It is not like scraping paint off wood trim. Essentally the same thing as pouch advancement. It is a painful surgery/recovery, but it can have very good results. You just need to be sure that the cuff is your primary issue.

Jan

thanks jan, to make sure the cuff is the primary issue is another scope in order?

also, is proctofoam or hc suppositories best for cuffitis?

Well, a pouch scope will only visualize the pouch. If you are having problems with any solid food, other than simple diarrhea, your problems may be anywhere in the GI tract, or be adhesion related. A pouch scope would not help in that case, except to rule it out as a problem. I bring this up because I cannot think of another person who could not tolerate any solid food solely due to cuffitis (and I have been active on these forums for over a decade).

As to whether Canasa or hydrocortisone is better for cuffitis goes; I think they are pretty similar in efficacy. Canasa has an edge in preference because it is not a steroid and so it is considered better for long term treatment. Personally, I did pretty well with Canasa, then switched to sulfasalazine (oral), with Canasa for acute flares. But, my best function dis not occur until I went on injectible biologics.

Jan

could it be my cuff isnt a problem at all but the pouch is trying to deal with a pure liquid diet? i do bleed but remember im on blood thinners for a blood clot. whenever i add like pb n j sandwiches i get a lot more frequency.

could cutting back on my hc suppositories possibly help like in jeans thread? maybe it aggravating my situation. i did have pain in the cuff area that has subsided since the hc's but now and then i get these intense urges to go and freeze in my tracks till they subside...

Well, peanut butter and jelly isn't as great as it seems, because it is high in sugar, which promotes diarrhea, particularly if your gut is used to Ensure. It is even possible you have peanut allergy, one of the most common food intolerances. Things like oatmeal, rice, tapioca, banana and applesauce are better transition foods.

It sounds like you are having spasms in your sphincters. I had those for a year or more post op. I don't know if it was the right thing or not, but I just tried to ignore them as much as I could, particularly since what I ate or didn't eat didn't seem to make a difference. Same thing with frequency. It is up to you how much you want to limit your diet, but I just ate what appealed to me and sometimes just paid the consequences. Eventually, my gut got used to it and things got better.

Again, I don't know what's right for you, but I would not want to live on Ensure unless it was an absolute necessity. I could handle diarrhea, but that's just me.

As to the bleeding, if the HC suppositories seem to reduce it, keep using them. If not, you may as well, stop them or reduce the frequency and see how it goes. Anticoagulants add another wrinkle to the mix, for sure.

Jan

thank you jan. your replies are truly appreciated...