I just had my first pouchoscopy here in Sweden. My pouch looks pretty good; there's mild inflammation in one part, but I've felt good for the past 18 months and don't want to mess up my flora with antibiotics unless it's really necessary. No evidence of cuffitis either. Based on the clinical findings, my doctor isn't recommending antibiotics.

I find it a bit odd that he didn't take any pouch biopsies during the procedure. I asked him about it, and he said that they normally only do that if there's decent inflammation present. I've experienced significant rationing of healthcare since I've been here (lots of stories), but I'd like to get some input on how important it is to get regular pouch biopsies? I know they're important to check for dysplasia and inflammation, but apparently routine pouch biopsies aren't worth the cost here!
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I've gotten biopsies each year, with the exception of one. Its usually the tiny bit of colon left to check for cancer cells (family history plus of course my own puts me at greater risk) and I think they get the pouch as well because I was indeterminate colitis so they are always looking for Crohn's, and I have frequent pouchitis. I also tend to have more conservative doctors, which is fine by me because I like checking every inch!
I have chronic pouchitis/SIBO/inflammation and they always biopsy me every year, both the pouch and the retained rectal cuff that is left in. If cancer strikes, studies out of Cleveland Clinic have shown that it will more likely be in the retained rectal cuff where it develops. This is essentially diseased tissue or colonic tissue that was left in your body. My GI told me they left a very small amount of rectal cuff in me (for which he complimented my surgeon) and in 22 years with the J pouch, no cancer so far. However I have now had that rectal cuff for 42 years while suffering from IBD in some form and it did have some inflammation on the last scope.
The risk of cancer in a non-inflamed cuff is probably rather small. I could see a reasonable *clinical* (not cost) decision to leave it alone. The cancer risk in UC is large partly because there's so much colonic tissue at risk, with each cell having an elevated chance of transforming into cancer. Even if the rectal cuff cells each have an equally elevated risk, there are far fewer of them.
Thanks guys for your detailed replies. Isn't one of the main reasons for annual pouchoscopies to take biopsies to screen for dysplasia?

Scott, I agree with you about the risk of rectal cuff cancer being small, but there should still be a clinical motivation to biopsy the cuff regardless of its present state of inflammation. I had severe UC for years, especially in the rectum, so my risk is obviously still higher than the average person's. As a result, the decision not to biopsy can really only be interpreted as a desire to limit costs and resources. Furthermore, I hadn't even had bloodwork done for two years, and they still weren't prepared to order any for me until I asked repeatedly. My doctors in the U.S. always advised bloodwork every six months. The thinking here is that tests aren't ordered unless there's a clear problem; maintenance/monitoring tests are considered unnecessary.
My doctor told me that if you had dyplasia when your colon was removed you absolutely should have biopsies in the rectal cuff and pouch every year. I think the Cleveland Clinic study showed that 5% of cases ended up with rectal cuff cancer. These were mostly people who either had cancer or dyplasia when their colons were removed. I fall into a risk category, one because I had dysplasia with the colon, and two because I have had the pouch inflammation for 20 plus years. Another factor could be how much cuff your surgeon left in. My GI told me my surgeon left in a very small strip of rectal cuff and I imagine this was due to the extent of the disease.
Certainly someone who's already developed dysplasia or cancer should be monitored.

John, it sounds like you *might* be getting better care than in the US. One of the (numerous) reasons US healthcare has poorer outcomes than most of the developed world is that we've been programmed to expect more tests and procedures than are good for us. Every test has the risk (not small) of an incorrect result. Every procedure carries a risk of an adverse event. Most people without specific risks or symptoms are much better off without regular blood tests.

To give a personal example, I had unnecessary kidney surgery because of a false-positive imaging study. The study was done for unrelated reasons. No one did anything wrong, but I sure wish I hadn't had the test!

I honestly wonder whether a healthy rectal cuff, with a UC history but no dysplasia history, might be at much lower risk of cancer than an average person's colon.
Scott, I appreciate your input. How terrible that you had to undergo such a major surgery unnecessarily. I certainly understand your point about the possibility of excessive testing leading to poorer outcomes. I suppose our views on these sorts of things are mostly colored by our own healthcare experiences.

CTBarrister, I was also a patient of Dr. O when I lived in your area. He was fantastic. You're fortunate to be in such good hands. Hope you're doing well these days.
Thanks John. Dr. O is still my doctor and the information I posted above came from him. He is great. I get the sense that he talks to Dr. Shen on a weekly basis and learns everything that is going on at his old stomping grounds, the Cleveland Clinic, where he did his Fellowship. Dr. O basically has me under control but like some others I have a stubborn case of refractory pouchitis and can't get off antibiotics, much as I have tried.

Scott, I hear ya on the unnecessary testing and procedures. My good friend who has UC had an unnecessary gall bladder removal due to a false positive imaging test. After the gall bladder was taken out it was examined and there was nothing wrong with it. It was healthy. Unfortunately they cannot put it back in once it is taken out. My friend considered a medical malpractice lawsuit especially because he had needless complications, and pain that sent him to the ER after the surgery which was done laparoscopically, but is by no means totally comfortable. Eventually he just moved on from the whole ordeal.

It's true that we in the USA over-test and over-procedure and the reason for it is medical malpractice lawsuits. Although it is not my area of expertise I was involved in a medical malpractice lawsuit some years ago that resulted in a jury verdict against a local hospital which, after the verdict, started routinely performing a certain diagnostic test that they had not performed previously. Whether that test should be routinely done is open to debate. Our medical expert witness (a superstar who riveted the jury) said yes. The hospital's medical expert said no. The jury believed our expert. But I think Scott is probably right and that generally USA hospitals greatly overtest and over-procedure due to medical malpractice lawsuits. In fact liability insurers may require a lot of it as well.
Last edited by CTBarrister

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