Cancer in the rectal cuff is uncommon but has definitely been reported. Periodic biopsies are probably a good idea, and if your original surgery was due to cancer or dysplasia (or FAP) then that increases the strength of the recommendation and the suggested frequency of those biopsies. Most people here who get regular surveillance *without* a dysplasia concern report frequencies like every 1-2 years.

The complication you seem to have had from that earlier biopsy is very unusual - the biopsy tool isn’t really big enough to cut a hole in the intestine with a single “bite,” though the scope itself can perforate if used with too much force or if the gut is very fragile. I think in gentler hands you’re likely to have a better result.

I confess I don’t get scoped very often, but that’s not a recommendation. I think the risk to a cuff that isn’t inflamed is modest, but it isn’t zero. I’d expect a new GI would want to have a look and to take some biopsies.

Yeah, I have had 3 pouchoscopys since my J-pouch has been built. I have had it biopsied and I was awake for it and it did not hurt at all. I even drove myself home

I have heard of people getting cancer in the cuff but I have not heard it that often. There are people that have had their pouch for over 40 years and have never gotten cancer there. I would recommend getting checked: biopsied/pouchsoscopy every 1-3 years

Have faith that everything will be okay, stay in the moment

I have my cuff biopsied annually despite having had little to no inflammation there because I am in 2 of the 3 "high risk" groups, for all of which annual scoping and biopsies is indicated:

1. Dysplasia of the colon pre-colectomy;

2. Chronic inflammation of the Pouch;

3. Cancer of the colon.

If you aren't in one of the stated risk groups the recommended interval could vary from 1 to 5 years, and you have to decide how much risk you want to take.

The Cleveland Clinic did a study on pouch  cancers around 10 years ago. While they are rare, the risk isn't zero. My recollection is the study showed most cancers started in the cuff and occurred with patients who had severe and poorly treated pouchitis. My former GI Dr. O was somehow involved in that study when he and Dr. Shen we're both still at CC. He knew many of the patients who were in the study as I recall.

Frequency of pouch surveillance is actually controversial in some places. As time goes on and there are several decades of pouch data out there, there generally is no strict rule about this. Mostly, if you had cancer or dysplasia prepouch you definitely need more frequent scopes and biopsies. Once you get into the 10-20 years since first diagnosis of UC, you are at a higher risk. FAP adds a different layer of risk.

For myself, I am 50 years from my UC diagnosis and 26 years since my pouch surgery. I was informed this year by my GI that I can now go 5 years between scopes after multiple years of negative biopsies. I had been doing every 3 years for the past decade or so.

https://academic.oup.com/ecco-...cle/10/6/747/2605159

Jan

Wow! I've never heard  cuff cancer. I will definitely discuss with my GI doctor. One dr told me risk of Colin Ca went up the small intestine after J-Tube. But that is not true. I wonder if they were referring to the COLLAR.Thank you for your responses! Bev

You have to remember that the rectal cuff is retained colonic tissue. All of the colon isn't removed; what remains is the cuff. So to extent that any cancer starts in the cuff and migrates to the J pouch proper which is comprised of Ileal tissue, the cancer is migratory colon cancer as opposed to originating in the J Pouch. In much rarer cases it starts in the ileum or ileal tissue. Ileal cancers as opposed to colonic cancers are very rare, but they are not nonexistent.

If there is any kind of ongoing inflammation with the cuff or cuffitis that becomes chronic, this would likely be as much or more of a warning sign than chronic pouchitis. Most important is that the inflammation needs to be getting treated. I have been fortunate that my pattern of inflammation all appears to be at the other end of the J Pouch and the neoterminal ileum. Notwithstanding the stricture I have in this area that is being dilated, my pouchitis has mostly been under control for 25 plus years.

@Drbev603 posted:

Wow! I've never heard  cuff cancer. I will definitely discuss with my GI doctor. One dr told me risk of Colin Ca went up the small intestine after J-Tube. But that is not true. I wonder if they were referring to the COLLAR.Thank you for your responses! Bev

Your welcome Hope everything is great with you

Wow! CTBarrister, so yours is childhood too! So grateful for the all the info . I have not heard of pouchitis; but I wonder if I have it?  I have rectal bleeding and ulcers in my rectum which docs thinks is causing the bleeding. They didn't name my issue I have just ignored all of my issues and thought it still was way better that the pre-j-pouch days! Thank you!

I did have ulcerative colitis from ages 9-29, 20 years. I have had my J pouch since age 29 and I am now 58, so exactly half of my life. The majority of that time I have had to treat pouchitis, albeit mostly successfully.

However, rectal bleeding and ulcers are issues I have never really had. My cuff is mostly in good shape, but due to the dysplasia in my colon pre-colectomy and my 25 plus years of pouchitis, they scope and biopsy my cuff and pouch every year. In fact with my dilations I am going to be scoped around 4 times this year.

And yes despite these issues, I am way better than I was during the 20 years I had UC. I feel like I traded up in diseases, and I take that trade any time.

Wow! I agree! I hope you stay healthy too!🙏❤

In the article I linked above it was noted that most of the cancers that occur in the j-pouch occur in the ATZ (anal transition zone). This is the area between the rectal cuff and the anus. The pouch attachment suture line would be between the rectal cuff and the j-pouch.

Overall, the incidence is very low and is mostly in patients with precolectomy cancer or dysplasia. So it is important to have perspective and not get alarmed that there may be some risk. Remember, having a pouchoscopy does not prevent or cure cancer. It just increases the likelihood of detecting it.

Jan

I agree with Jan. There is a lot of variability, both between patients and institutions on cancer surveillance. Someone who had dysplasia at colectomy and still has a cuff will likely need frequent scopes/biopsies. I developed a severe UC flare in my rectal stump between stage 1 and 2 so my CRS dissected out all rectal mucosa and stapled  my pouch as low as possible to the anal sphincter. Across several scopes they have confirmed no mucosa left. I didn’t have dysplasia before and have no colonic tissue so I could likely get by without scheduled surveillance. I have other wonderful indications for scoping so get plenty of pouch inspections but not for cancer. Everyone’s situation is different with different recommendations at different institutions (which are not necessarily supported by a ton of good studies). I just do what I’m told at this point unless it seems overly or underly aggressive.

I had the j pouch after many years of ulcrative colitis due to colon cancer.  I was scoped every year and 5 years later the cancer returned in my rectal cuff.  I now have a perminent ileostomy.