This has been discussed on this site frequently. Some people like to get an annual screening pouchoscopy, but other folks go much longer between exams if they aren’t having any trouble. There is some risk of cancer developing in the rectal cuff, so it’s probably past time for you.

Thanks

The general rule (I have been told) is that if you either had dysplasia in your colon pre-colectomy or chronic inflammation of the pouch (or both), annual scoping is indicated, otherwise it is discretionary.  I had dysplasia in my colon pre-colectomy and have had chronic pouch inflammation for 23-24 years (and neoterminal ileum inflammation which surfaced 15 years after I got the pouch), so I get scoped every year.  When you do get scoped, a strong area of interest for biopsy is the rectal cuff, the one remaining portion of colonic tissue.  Although pouch cancers are very rare, I was told by my ex-GI who was involved in a pouch cancer study at Cleveland Clinic that the rectal cuff is where it will most likely start.  He told me the rare cancers they did see were mostly with patients who had severe pouchitis that was either untreated or unresponsive to treatment.

CTBarrister posted:

"When you do get scoped, a strong area of interest for biopsy is the rectal cuff, the one remaining portion of colonic tissue. "

I was recently scoped and am wondering if biopsies were taken of my rectal cuff, which seems to be where I am having the most difficulties. I was very surprised that the dr who scoped me had very little experience with j-pouches, especially since I traveled to the largest medical center in US for a 2nd opinion regarding my j-pouch specifically. Before the scope I tried to explain to him the difficulties I was experiencing with the cuff, but he was not at all interested and stated that he was just there to take biopsies and nothing else.

In the pathology report, there were only two vials with biopsies: one was labeled "terminal ileum pre-pouch, ileoanal pouch" and the other labeled "terminal ileum, ileoanal pouch".  Could a biopsy of the rectal cuff fit the description of either of these sample?

Is there a big distinction between total colectomy and subtotal colectomy? I know I had a subtotal colectomy, but every report out of this 2nd opinion lists a total colectomy. I have some concerns that they did not take my rectal cuff issues seriously, especially if they don't realize I have one.

Thank you in advance for any clarification you can offer!

Laura

Laura, I would request a copy of the written report prepared by the doctor who performed your scope exam.  If accurately written, it should state where the biopsies were taken.  The wording "pre pouch" suggests it could be the rectal cuff.  I would also consider having a different GI do your next scope exam since you feel uncomfortable about the service you received.

Laura,

I think you need to ask your doctor to know for sure, but that description doesn’t make it sound like your rectal cuff was biopsied. Neoterminal ileum is above the J Pouch. Rectal Cuff is not any part of your ileum- it’s colonic tissue. As suggested by the prior poster, ask for the doctor’s report.

If a J Pouch is scoped, the rectal cuff biopsy should be automatic, and I know they always do it in my case even though the inflammation in my cuff isn’t as bad as it is in the neoterminal ileum. The cuff is the greatest cancer risk area and that’s why it should be automatically biopsied.

Your profile suggests you are in Arizona, I would try to locate someone experienced with J Pouches to do the scopes every year. That might mean driving to somewhere like Phoenix and staying overnight, if so do it. You should be with someone whose expertise is comforting to you. I know it’s important to me to have that although I am somewhat lucky because I have had great Pouch experts in New York City and at Yale since I got my J Pouch in 1992.

I just seen my GI dr although I have not had pouchitis or cuffitis since td 2013; I have a lot of other issues.  She told me once a yr.  Truthfully I really don't want to go through that 1x a yr if I don't have to.   

What other issues do you have? BTW cancer is also something you don’t want to have to go through, if you don’t have to. I speak from experience on that.

I have pain when doing any kind of physical work or certain exercises.  I have rectal bleeding and burning; unbearable at times but not always.  I have anemia and take a b-12 injection.  I just started a new med for IBS called Methscopolamine Brom 2.5 mg.  They say I have IBS, SIOB and mechanical mobility. 

tf posted:

I just seen my GI dr although I have not had pouchitis or cuffitis since td 2013; I have a lot of other issues.  She told me once a yr.  Truthfully I really don't want to go through that 1x a yr if I don't have to.   

Yeah, I was thinking I was due. Like u, I don't like the program though.