I had my pouch done 28 years ago, and takedown 6 months after that. I had a couple instances of pouchitis, and food poisoning, but haven't had anything since, and haven't seen a GI Dr in 25 years.
Last GI Dr I saw said only needed to see him if I had problems.
I'm curious if people are having regular pouch checkups, or at what frequency you see GI specialist, even if you are not having problems.
Replies sorted oldest to newest
I’ve had a scope test every year since 1981, I could never not see my GI doc. I’ve done well for many years, but last 10 have been difficult with diet.
I get regular checkups from my GI & PCP doc in addition to my yearly scope tests.
I get a check up once a year. Although I've never had any problems, my doctor said that it's really important I go once a year for the rest of my life.
My DH goes once or twice a year. He is going on 27 years on his pouch.
I can’t tell if you’re asking about office visits or pouchoscopies. Lots of folks do get an annual pouchoscopy, usually by a gastroenterologist (but sometimes by their original surgeon). There’s a very small risk of colon cancer in the rectal cuff, but the risk is higher if the original colectomy was done for dysplasia or cancer. I do see my gastroenterologist annually, but that’s mostly because he also does my primary care. I only have pouchoscopies occasionally, if there’s a question the procedure might help answer.
I see my family physician regularly, but never a GI Dr. As I mentioned, the last time I saw one, he said no need unless I have problems. He apparently was one of the top GI doctors in Canada.
I guess I wondered what they would be looking for, if doing a scope annually. Cancer makes sense. I was aware of the risk at the rectal cuff, but have never worried about it.
Maybe I'll ask my physician to look into it, I'm 59 now. I don't know if the same doctor is still practicing, or may need a new referral anyway.
Annual scopes are indicated for patients who (1) have either had diagnoses of cancer or dysplasia at the time of surgery, and/or (2) those with chronic inflammation. These are both higher risk groups for rectal cuff cancers and one of the objectives of the scope is to biopsy the rectal cuff annually. As a member of each group I have had annual scopes of the pouch every year since 1992, and before that had colonoscopies done every year since 1972. So I have had 48 years of annual scopes. I am due for one this month, but scoping is postponed due to the Covid 19 pandemic.
If you are not in either risk group less frequent scoping is indicated.
My gastroenterologist checks my pouch every couple of years. It’s been 25 years since my surgery.
I got my j pouch because of stage 1 cancer that was almost undectable, but luckily my gastroenterologist saw something "funny looking", and off we went. I had no cancer symptoms before this, but had UC for many years, which was in remission most of the time.
After takedown I had an endoscopy every six months by the surgeon who created my pouch (under general anesthetic at my request). At the third year mark, I graduated to an annual endoscopy, but for the first time including a cat scan using dye, to check my organs. My pouch is four years old and functions very well.
I had my J-pouch surgeries at Cleveland Clinic, Cleveland, but my local Gastroenterologist and I agreed that a once-per year visit, just to keep my history up-to-date with their records in the event "something happens". He really doesn't examine me to any extent during those annuals, but takes notes on general health, pouch-related activity, diet, etc. He's also the one who keeps my prescriptions for Lomotil and loperamide going for me. He did a pouchoscopy at my 1-year pouchiversary, and we agreed that perhaps once every 5 years from then on is fine.
I had yearly scopes for 15+ years. It's only been in the last 6-8 years that my GI has reduced them to one every two years. But I still have an annual visit.
Annual visits for me but my gastro said I should get a pouchoscopy every 3 years. I am not sure if I agree with that but that is what he said. I am almost 6 years in.
hubby gets about 2 or 3 checkups a year..(also depends if he gets pouchitis)
I should mention that for patients on Remicade, checkups are mandatory every 4 or 6 months as a condition of insurance coverage. And since it's likely you would not want to pay the $10,000 retail cost of a Remicade infusion in Connecticut, you would probably want to go for those checkups. My last one was a "televisit", as I was advised in this Covidian Era we now live in that televisits meet the insurance requirements.
