Could this be Crohn's? Ulcerative colitis is only in the colon. It cannot be in the small intestine aka the j pouch. So any severe inflammation must be from Crohn's. OR is this a nasty case of pouchitis?? Do you have more info?

Yeah, that can't be correct. UC affects the colon (large bowel), and affects the inner layer, where Crohn's can affect essentially the whole digestive tract, and much deeper into the intestinal wall. UC would not be found in the small bowel.

mgmt10 is on track... could be Crohn's or pouchitis. I'd get a second opinion.

If the UC is at the rectal cuff that would be cuffitis. Are you clear about the location?

That's true. If its in the anal cuff left, it'd be UC, probably... but not in the small bowel.

I faced similar challenges. Moreover, my long-time gastro retired and I now have a new one.

I found the following article pertinent:

onlinelibrary.wiley.com/doi/10.1002/ibd.20661/full

I am particularly fascinated by a sentence in the 3rd paragraph: "or it is possible that these patients have a brand-new disease." Also interesting is the fact that problems can arise both shortly after and long after original surgery.

I've been taking 6MP for several years which seems to have controlled inflammation.

You know, I *do* think that UC sufferers still have the propensity to "fight" their new pouch, just because you can't change our DNA, you know? It makes sense. Also since it's rarer for FAP patients to get pouchitis overall, to me it nearly proves our bodies still want to do something inflammatory/auto-immune to the new pouch, to con't the attack.

I've said for years that eventually it'll come out as a new form of IBD, once some smart person does a conclusive study to prove it. I bet it happens eventually. (That it gets its *own* name, vs. being "Crohn's" disease conversion.)

It's more likely that this is cuffitis (which literally is UC in the remaining section of the colon which forms the cuff). However, if there is inflammation in the pouch itself, this could mean pouchitis or Crohns. But you cannot have UC in the ileum.

My understand is that it is no longer determined UC but Chrons. I have a friend that for yrs. called it UC until later determined b/c in her pouch maybe other areas not sure that it was actually chrons. now has permanent illeo and doing better.

Wow, you folks are a Godsend! Okay, here is the exact wording on Hubby's report: "Your rectal biopsies showed severely active chronic colitis with extensive ulceration. Complete labs to evaluate for H. pylori bacteria in the stomach."

Back when Hubby had his surgery, they kept his rectum, which they reattached to his new plumbing. Seems that the rectal tissue is the problem?

He's had---in the past few weeks---the first problems with his digestion, that is, stuff that is new and problematic. He's had stomach pain and cramps, and butt burning. Doctor put him on Flagyl, which as helped a lot. Then, this report came in yesterday.

Hubby's fear is that they'll need to put him on an external bag. I think that replumbing the body comes with a lot of complications for a lot of years, it seems.

Advice? Ideas? I so welcome your wisdom!

Retaining the rectum when the diagnosis is UC often leads to ongoing proctitis in the retained rectum. The solution is NOT an ileostomy, but a proctectomy- removal of the rectum. He can still have an ileoanal j-pouch.

Back in 1988, the j-pouch was pretty new stuff and they have learned a lot since then and improved surgical techniques. So, what you were told then is not the case today.

Jan

I'm certainly not an expert but it sounds like pouchitis (which would respond to the Flagyl) and cuffitis which could have severe UC in the retained cuff or in your husband's case, the rectum. Jan is the resident expert on just about everything so I'd embrace her answer.

I'm not sure what is involved with a proctectomy or if your husband might have to have a temporary ileostomy, but it would be that - temporary.

Welcome to the site. The people here are pretty dang amazing and can help.

kathy

Well that explains more. He is having active disease in his rectum. I'm sure if I still had my rectum I would still have active UC in it as well since my rectum was a hot spot for my UC before the surgery. Has he been fine since 1988 and now this happened? I would guess his doc is going to suggest treating the area with rectal meds. Let us know how he makes out and I hope he feels better soon.

Hi all, and thanks once again. You know, I was mentioning to Hubby that his digestive issues have not changed in years. He has no cramping, no blood, no gas, no increase in bowel movements---nothing new. Yet, here is this terrible infection.

Last year, he had a hernia repair from a rupture along his suture line from his first surgery back in '88. The doc removed gobs of scar tissue, and put in a mesh to hold Hubby together down the middle. The surgery nearly killed him. He was in intensive care on and off for a month. A very scary time. His surgery in '88 was very difficult with complications (obstruction), also. We are both anxious at the thought of opening him up again. Better be sure our advance directives are in order. Gulp....!

I hope they can treat it so he doesn't have surgery but this surgery would not be as bad as the last as the rectum is not as big as the large intestine. If it comes to surgery please look into what kind of surgery they are going to do. It sounds like he has a lot of scar tissue so lapro is probably out. Then discuss how they are going to attach the j-pouch to the sphincter muscles - the rectal cuff. The most popular one these days is the double stapled procedure. They leave in around 2 cm of the rectum and staple the pouch to it. This is preferred so we won't leak. The problem is some UC people, like me get UC in that 2 cm and your husband might want to look into another type of operation. There's an operation where they scrape off all the mucosa cells of that 2 cm before attaching the j-pouch to the rectal cuff.

Sorry for leaping so far ahead but I wish I'd known all of this before my surgeries. I probably would have had the same operations that I did, as this UC of the cuff is rare. It's called cuffitis.

Good Luck and I hope he avoids surgery!

quote:

He has no cramping, no blood, no gas, no increase in bowel movements---nothing new. Yet, here is this terrible infection.

Previous treatment hasn't been mentioned as the topic has concentrated on his diagnosis but, what treatments has he received for the infection to date?

cheers
Liz

I don't think daughter had had the same "answers" since she had her j-pouch 19 years ago in Baltimore. Thank heavens the retired head of GI stepped in - she developed a mass, rather hard - cat scans showed nothing - even had a colonoscopy last week along with biopsies etc. They had tried to drain the mass as it was infected. They now say she has COLON cancer but her colon was removed 19 years ago - even the colo/rectal Dr couldn't quite believe that - and he wants to get her in right away for chemo and radiation plus part of her hip bone?? - she is a teacher and a beloved soccer coach - what a Mothers Day -

This is the first I've ever heard of Cuffitis. What!!!!  After having my colon removed, I could get UC in the cuff around the rectum? I have wondered about this, I have ulcers that I can see.  Do you know what the treatment is for cuffitis?  

(By-the-way, I like your quote).

 

Doris

 

Doris, the rectal cuff is internal. If you can see ulcers (without a scope) then they are not cuffitis.

 

Cuffitis is (mostly) treated with UC meds, generally placed rectally (suppositories or foam). Since the entire affected tissue is so easily reached, the meds are sometimes quite effective.

I had never heard of it before, thanks for whatever info I can gather.

Doris