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8 replies

future JPouch Care/exams

J JenmystiqueMember
On my last doctor visit with my surgeon, he mentioned that he or my GI would need to "check" my JPouch every year.
He was also telling me about a test he was ordering for me to check for leaks and to schedule my takedown. So I was a little overwhelmed to ask about how they would be examining the pouch in the future...

Is this common to have it checked out every year or is my doctor just being over cautious? (in theory I don't mind being over cautious--I do have a cousin in the hospital right now dying of colon cancer, and I've been over cautious with female cancer exams for 20 years. I believe over cautious may be expensive but has no real other bad side effects)
And how would this exam be done? What's the norm? Something like the barium enema test the radiologist did to check for leaks or a JPouch version of a colonoscopy? Just curious about what the future holds for me.

Thanks!
Jen
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L lixxieMember
My surgeon initially wanted yearly exams. Then after about 5 or 6 years, he was happy to push them out to every 2 years.

For me, the test involves going to the Day Procedures Centre at my hospital, having a fleet enema beforehand (no prep the night before as with colonoscopies) and then having a scope done under twilight sedation. It's listed as a 'flexible sigmoidoscopy' on the notes, but that may just be what they refer to the procedure as, since I'm pretty sure I don't have a sigmoid anymore!

I've heard some people have these scopes done in their doctors offices, but I'm pretty happy to be knocked out for it.

Regarding expenses, this is covered by our national healthcare system, so there is no cost. But being in the US, I imagine this is different.

My history is 12 years of UC, so my surgeon is concerned with checking the small remaining 'cuff' of rectum for signs of cancer.
J JenmystiqueMember
Thanks. I'm a prude. So when he was describing the barium enema thing, I asked him if I would be sedated. He said no. I said "are you SURE??". I even told him I made it to 41 without ever having an enema for any reason and would like to continue with that record... at least being alert for it. He laughed at me and said he was ruining that for me. LOL

Jen
CTBarristerCTBarristerMember
Regarding the timing of scopes, I have been told annual scopes are prudent because of the potential for developing cancer in the retained rectal cuff. See this thread:

http://j-pouch.org/eve/forums/...127007026#3127007026

When you are scoped they simply take biopsies from the area.

It should be noted that those who had a dysplasia diagnosis pre-colectomy are especially heeded to be on an annual cycle of scopes. I had low grade dysplasia before my colectomy was done.
J jeaneMember
The test you are referring to is when they inject solution up through your rectum into your pouch to check for leaks before takedown and the radiologist takes pictures. It is a quick, easy test and not painful. The liquid may come up through your stoma area into your bag when they do the injection through the rectal area. This is an important test before takedown as it checks for leaks, which if they occur after takedown they are very hard to deal with and can causes many post op issues.

As far as the annual scopes, as CTBarrister mentioned, if you had any question of low grade dysplasia in any section of your colectomy pathology report, you will need annual scopes with biopsies. Also, if you have a history of cuffitis after takedown, as some of us do, the annual scopes are also merited to check for rectal dysplasia in the remaining cuff.
J JenmystiqueMember
I had the barium test last week and no leaks detected!!! And one day I'll get over my prudishness.. maybe. Smiler
I was uncomfortable because there was a doctor in there still in training learning from the radiologist MD. The student had this big goofy grin on his face that was just offsetting. I think the radiologist picked up on me being uncomfortable because he sent him out of the room for the actual test. The lady assisting him also had a student with her but that student was wearing a goofy grin, real nice, brought me magazines while we waited for that doctor to call my doctor, etc.. so she was in there the rest of the time. Smiler

thanks for telling me about the yearly test. Glad to know it is one that I can be sedated for. Smiler I REALLY appreciate not being alert for those things.

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