Pouchoscopy

There are a variety of opinions about this, among both doctors and J-pouchers. It also depends on the purpose of the surveillance. The risk of cancer developing in the rectal cuff is low but rectal cuff cancers do show up now and then. Sometimes inflammation or strictures or fistulas need to be managed. Folks who had colectomies because of cancer or dysplasia often choose annual pouchoscopies, and folks who had colectomies for FAP issues may have even more frequent scopes. Others tend to work out a plan with their GI or surgeon - some choose a time-based interval, and others don’t bother unless there are symptoms that need clarification. I tend toward the less frequent, symptom-based approach, so it’s been at least five years since my last pouchoscopy. It will be interesting to see what Dr. Shen recommends for you, but I’d suggest making sure he’s aware of the financial hardship first, so he can strike a proper balance in his recommendation.

Some folks are quite certain that some particular frequency is *correct*, but there’s not really much justification for that kind of certainty. The cancer risk in particular, which is positively enormous for folks with longstanding UC and intact colons, becomes a much smaller matter when the amount of colonic tissue is also much smaller.

This has been discussed frequently here in the past, and if you can fashion a search that turns up some of those discussions you will likely find them useful. I’d suggest including “annual” as one of the search terms to help locate the most relevant conversations.

Thank you so much for this so informative

I live in Houston and have great insurance but the options here are so limited for j pouch care. I should say good j pouch care. There’s a lot of terrible doctors who think they know and do not know. I have had some experiences that have made me worse.

I had been able to travel to Cleveland for years and had great care until they changed our policy based on location. Because pouchoscopy code is “done” here in town the insurance says that the care is provided and it’s my choice to go out of town. I have appealed formally and been denied based on CPT codes.

im not giving up just trying to plan.
kate

I have confirmed with about 5 doctors, its every 1-3 years. Every year if you have problems. Every 1-3 years if your pouch is "normal"

Kate, pouch scope frequency should be determined individually, and it depends on what your diagnosis was prior to surgery, whether you have a retained rectal cuff mucosa, if you have ever had dysplasia in your pouch, and if you have ongoing pouch problems. Some doctors automatically have you come back annually. This is rather “old school” from the days when the j-pouch was new and they were gathering information. But, the procedure has been around now for over 40 years, with refinement over time. There is even fairly recent info indicating no regular surveillance is necessary when you are asymptomatic.
https://bjssjournals.onlinelib...oi/10.1002/bjs.11811

But, in reality, it does not matter how many doctors recommend one thing or another. What matters is what YOUR doctor recommends (as long as you trust him/her). I do have problems and I have a scope every three years. I am currently in remission. Plus, I have never had any dysplasia show up, neither pre or post colectomy, going back to 1972.

Jan

Thanks jan for the good and kind words as always you are the best

dr Shen says once a year I have chronic pouchitis a stricture at the inlet dysplasia and about 3cm of rectal

katenet,

If you had dysplasia or cancer in your colon when removed, or a history of pouch inflammation, you should be scoped annually. Otherwise, it's discretionary and depends on whether you are having any issues or not. You still have colonic tissue (rectal cuff), and if there is that dysplasia/cancer/pouch inflammation history, you are deemed a risk and an annual scope candidate and this is just common sense. Usually cancers will start in the rectal cuff, and it should be biopsied in any scope, but ileal cancers are rare. In my case I had dysplasia when the colon was removed plus I have had chronic inflammation in the J pouch and neoterminal ileum, so I have been scoped every year for the past 40 years going back to my days with UC. It's essentially a no brainer in my case.

If you decide to go infrequently and not annually, based on the history you described, you have to ask yourself if you feel lucky, a question Clint Eastwood once famously asked in a movie after admitting he didn't know if he fired 5 shots, or 6, in the chase of a bank robber. You could choose to roll the dice, although the fellow Clint asked the question to decided not to:

https://m.youtube.com/watch?v=A732Cuuo2tI

I should note that Tony Snow didn't go for annual colonoscopies, rolled the dice knowing his history, and paid a huge price. But many others probably get away with it.