colonoscopy with surgery mentioned. : ( Do I have Crohn's disease too?

Hi Everybody,
I'm new here...but have had UC for 34 years.I have been maintaining it with lialda, suppositories, vit D and diet.

I also have a family history of colon cancer.

My colonoscopy today wasn't great. 3 polyps ( appear benign)..5mm 7mm 2mm. She removed the 5 and 7 but left the 2mm one.
As I'm writing this I'm wondering why the heck she didn't just take it while she was in there.

Some inflammation in rectum and sigmoid..but I also had granularity and ulceration in my terminal ileum. Isn't this Crohns???!

Doc told me I may need to have colon removed.

Welcome to the forum. You have some good questions.

"As I'm writing this I'm wondering why the heck she didn't just take it while she was in there." Your smallest polyp is less of a concern and risk than the larger ones are and was therefore left behind. Small polyps can fall off on their own, or they can get larger and will later be removed in your next scope.

"I also had granularity and ulceration in my terminal ileum. Isn't this Crohns???!" If you have ulcerative pancolitis (whole large intestine involvement) than it's common to have ileal-backwash. As such, part of your ileum may show active UC disease where the small intestine and large intestine join. It's common with pancolitis patients and not a concern.

Do you have Crohn's disease? No (assuming pancolitis), and there's no reason to worry about a change in diagnosis unless your doctor tells you it's changed. A diagnosis is made using many, many data points, and collectively they determine what you have. Although one, single data point might suggest something else (like an ulcer in the ileum, is it Crohn's?), you can dismiss it once you look at everything else together. Crohn's looks very different under a microscope in biopsy slides, and can rule it out. Uc is characterized as shallow tissue involvement limited to the top most mucosa layer. Crohn's is characterized by much deeper tissue involvement.

Will you have to get your large intestine removed due to the above findings? Nope, not at all. What would result in surgery is a biopsy finding of dysplasia (precancerous cells) or malignancy (cancer). Overall only about 5 percent of uc patients ultimately get colorectal cancer (inversely 95 percent don't). Most polyps are benign.

I'm willing to bet your doctor was saying you have increased risk due to your family history of colorectal cancer. If you've had pancolitis for multiple decades then that also increases your risk. However, even both of those combined doesn't give you a certain chance of surgery (remeber the 95 percent don't need surgery tidbit?). Within ulcerative colitis, there's two proven things that increase our colorectal cancer risks: disease severity (pancolitis patients have increased risk over lesser extents), and time (the longer we have uc, the greater the odds of crc). Just given your risk profile, make sure to keep up with your preventative screenings and you'll be fine.

Hi...welcome to the forum.

I'd say more yes to CD than UC considering that the cecum is normal mucosa, no inflammation or changes. There is a form of UC that has cecum involvement and rectal involvelent but not between...I suspect it eventually becomes pancolitis, especially if only the rectum is treated and not above.

Terminal ileum involvement is sometimes backwash with U. Pancolitis, but the cecum would be involved as well.

With terminal involvement, I wouldnt suspect that a j-pouch is a viable option without continuing issues...

Considering your family history of bowel cancer and possibility of CD, you have a lot on your plate regarding decisions. Do as much research as you can, compile lots of questions and have good discussions with your doctors and others regarding options, etc.

q

What's typical of Crohn's is skip lesions (areas of inflammation, followed by none, followed by areas of inflammation), deep tissue damage, and always ileum involvement. Uc is continuous inflammation always starting at the rectum and continuing upward, shallow inflammation and only involves the ileum in pancolitis (ileal-backwash). Of course there's a few shades of gray inbetween like Crohn's-colitis and indeterminate-colitis, but they're much less common.

I'd ask your doctor for clarification: rectal-involvement?, was it patchy?, and did the biopsies show deep-tissue involvement? And that should really spell out uc or Crohn's in classic, storybook cases at least (there's always more layers of complexity).

Certainly the flat polyp biopsy is key, let's hope it's benign. I'd ask about the removal, I posted before this. I'd like to provide you with a little hope that a colectomy isn't a foregone conclusion. A lot rests on the pathology of the biopsies which your doctor should go over with you.