Hello,

 

I had my J-pouch surgery at the age of 24 after being diagnosed with early stage rectal cancer from long standing UC.

 

Its been a few years since my surgery and my surgeon has opted to screen for recurrence with a yearly DRE. I’m worried that this might miss something... I wanted to get everyone’s perspective on what their pouch / cuff screening is like? Should I be pushing for pouchoscopy / biopsy? I was even thinking of paying out of pocket for a yearly MRI done at a private facility... this might be overkill but having cancer at 24 makes you rethink things a lot.

Original Post

The good news is that the pouch is made of small intestine, and cancer of the small intestine is very rare. Cancer of the rectal cuff (the bit of colon left in during most pouch surgeries) does occasionally occur and is probably worth screening for given your history. A DRE (digital rectal exam) could potentially miss part of the rectal cuff, and would definitely miss dysplasia, so I think many folks would opt for something like a yearly pouchoscopy with biopsies. It’s a fairly quick procedure that can be done with a pretty easy prep, and most folks opt to do it without sedation. An MRI would be a waste of time and money.

Sometimes pouch surgery is done by hand-sewing the pouch to the anus, which pretty much eliminates the rectal cuff. If that’s the procedure you had then your risk of a cancer recurrence is probably much lower.

Hello, Amin.

Your case is exactly what mine was. In my case, my surgeon scheduled a pouchoscopy (also known as an endoscopy) every six months. Each time, he looked for cancer, inflammation, and any abnormalities. Only once did he take some small biopsies for a closer look, and those were clear. We kept to this schedule for two years, and then moved to a pouchoscopy just once a year. So I kind of graduated!!  Now that I go in only once a year, he follows up with an annual CT scan of my chest and abdominal area to cover my liver, lungs, kidneys, and anything else in there. This protocol will only continue for five years, then I am clear. It could be that my surgeon is extra vigilant because my cancer was in a tricky spot and almost unnoticeable during regular colonoscopies, except that my gastroenterologist felt something during a digital exam and with sharp eyes noticed something "funny looking" on the camera screen that turned out to be my cancer, and from there it was a long journey. I am perfectly fine now.

If you trust you doctor / surgeon, you could write a list of questions for your next appointment to determine if further, or more regular, investigation is necessary. I have never had an MRI related to my cancer or for my j pouch, and none of the surgeons or oncologist prior to surgery suggested it. You could ask for a pouchoscopy and see what the results are, especially if you are really concerned. Put your mind at ease. Stress on the unknown is not good for you.

Before one of my pouchoscopies, I asked my surgeon to take photos inside my pouch and of the "owl's eyes" so I could see it. He did, and when I woke up I had a few photos to take home and they looked clear and very interesting. I don't know if all doctors will do this (might be cost involved) but mine did. He doesn't ever ask his patients to prep; I am allowed to have a light breakfast on the morning. I guess he uses a special hose to flush my pouch clean!  Not everyone asks to be sedated, but I do because I couldn't get through it otherwise. Besides, when I wake up in recovery I am given a bunch of cookies and juice, so there's that. 

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