after Jpouch - UC?

Yes this is not that uncommon. The rectal cuff inflammation is cuffitis and if it is chronic you should be having annual scopes with biopsies to check for dysplasia (better known as pre cancer state). I am currently in this situation also. Doctors often prescribe Canasa suppositories for this even for long term to assist with keeping the inflammation in check to avoid a possible future cancer. It is my understanding that if dysplasia is found you can remove the cuff and opt for pouch advancement surgery in hopefully most cases.

Yes, your risk of cancer in the retained rectal cuff is increased if you allow inflammation to continue untreated. I am not sure if the inflammation itself increases your risk, but it certainly makes it more difficult to identify early dysplasia. Otherwise, the fact that you already had a UC diagnosis increased your risk above that of the general population. That does not mean your risk is "very high" or you are doomed in any way. Cancer in the anal transition zone or cuff is actually quite rare, and it is fairly easy to detect. All it takes is regular scopes with biopsies.

Basically, just be smart about your follow care, but don't panic.

http://www.ncbi.nlm.nih.gov/pubmed/17432983

http://www.ncbi.nlm.nih.gov/pubmed/21287223

Jan

Jan, and others too, do you know if it is possible to request the surgeon prior to step 1 to remove this portion of the rectum as well so that cuffitis is not a possibility? Or is there a reason they are reluctant to remove it (i.e. incontenince risk or something). I still haven't had my first step surgery yet so I am wondering if I can ask the surgeon to remove this portion of the rectum as well.

Yes, risk of damage to the nerves of continence is much higher with mucousectomy. Studies show that along with it being technically complex, it does not really reduce your cancer risk or even elininate cuffitis. A few stray cells left behind can regrow.

Jan

The doctor opted for no treatment right now. I might have to remind them that the only flare of UC I ever had required a total colectomy.

I imagine it all depends on the degree of inflammation. It should be fine to wait and see if it resolves, persists, or worsens. You don't need a full scope each time to check. A simple digital exam reveals cuffitis, as it would feel "bumpy" to the examining finger.

Jan

kjeane - what is pouch advancement surgery and how does it solve the cuffitis? Also, does it address what Jan is saying that there is an increase in risk of incontinence if the cuffitis portion is removed?

If you see blood or the frequency of your BM's increases or if you have more pain in abdomen/j-pouch or the inside of your rectum burns please see your GI. Fortunately I ended up with all of the above symptoms before I had any scopes and I have been being treated with Canasa or Anucort since the middle of January for cuffitis - as the pathology reports say "ulcerative colitis". I also ended up with C-diff at the same time and the symptoms for it are similar to cuffitis except when you have them together it hurts worse. If I would have gone in sooner, when I first experienced the symptoms, and got treated then maybe I could have avoided the C-diff but I don't know.

Some people on here have posted that they never saw blood when they had cuffitis, so don't assume you will.

My local GI sent me to a GI specialist in IBD and related problems, like j-pouch ones, at the Mayo Clinic as he did not know what else to do to rid me of the cuffitis.

I didn't take any medication so I could watch all that was going on, during the flex scope there, and see what my pouch looked like. The doctor explained it all to me and he went 2 feet up into the small intestines past the pouch. All looked great until he got to my rectal cuff where there is 2 cm of bright red inflammation. I now know I have a great pouch and he says eventually I should only have 4-5 BM's a day, per him. BTW it hurt some but the benefits of seeing what my pouch looked like and his telling me all about it was worth it. He took samples from my small intestines, top of pouch middle of pouch and cuff. I didn't have to spend anytime in recovery but the time it took them to unhook me from everything and to get dressed. Result - I still had cuffitis. Off subject - sorry.

I don't know if your GI took biopsie's or just diagnosed your cuffitis, UC, visually. I'd say if he/she diagnosed it visually that I'd want to start using either Canasa or Anucort suppositories sooner than later. That is my hind sight.

The Mayo GI wrote me a prescription for 6 months of Canasa and instructed me on how to take it for maintenance after it feels like it is no longer inflamed. For example I might need to use it 2 times a week. I took medication while in remission before the surgeries for UC so it makes sense that now it's back that I need to take it again.. Canasa has the same ingredient that is in Asacol, mesalamine, and Anucort is hycrocortozone (I think).

I don't mean to scare you just spare you from how bad mine got.

Take care!