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UC or Chrons?

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Ulcerative Colitis
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Posted 1/29/2023 3:30 PM (GMT -8)
Hello everyone. I was dx with mild UC a little over a year ago via sigmoidoscopy (was preg at the time) due to urgency, frequency (2-4x/day) blood and mucus. I wasn’t having stomach cramping. I was unfortunately misdiagnosed with hemorrhoids a year prior to this so these symptoms were happening for quite some time.
They put me on mesalamine but turns out I am intolerant to it. Fast forward to a few months ago when I finally had a full Colonoscopy…. Prior to going in for the procedure I had began to flare very badly and was put on Budesonide… flare was different than usual, started with indigestion for a week, pain in upper stomach, and then progressed into back cramping, lower stomach cramping, going several times a day and a lot of blood. I was only on it for 9 days prior to going in but my symptoms were dramatically improved. Doctor said he saw a little inflammation in the rectum but everything else was clean. Pathology came back showing inflammation on the right side. I was surprised by this.

He mentioned that this could be chrons but it doesn’t matter because we are going to treat it the same… Entyvio (awaiting insurance approval).

What do you all think about not knowing whether it’s UC vs Chrons?

Post Edited (Hmmisme) : 1/29/2023 3:43:42 PM (GMT-8)

Posted 1/29/2023 8:28 PM (GMT -8)
H,
Diagnosis can change after you have an original diagnosis of UC.

With UC the disease pattern is one that gradually works it's way up the intestine. There is a cure--surgery to remove the large intestine.

With Crohn's Disease the disease pattern can be intermittent. There isn't a cure for Crohns. Crohn's disease patients can suffer more from extra intestinal symptoms. They are more prone to fistulas. They frequently have strictures leading to obstructions and multiple surgeries. ,(there are differences in the way they present and the outlook) When they operate on a Crohn's patients they try to save as much of the intestine as they can since Crohn's can be patchy, they don't know where or how much additional intestine will be impacted with Crohn's disease requiring removal. If the surgeons remove your large intestine, you have Crohn's, disease then reappears in the small intestine--and they've removed the large intestine already--the patient could end up with short bowel syndrom.

It sounds like you have some of the Crohn's indicators and your doctor is planning for "down the road".

I was originally diagnosed with UC, then they added Crohn's to the diagnosis. Apparently there have been biopsies taken just a few inches from one another showing different diseases. It's also somewhat common to be misdiagnosed with UC and then have it changed to Crohn's.

There are people on the forum on Enyvio and they have found remission.

Please let me know if you have questions.
Clo
Posted 1/30/2023 5:16 AM (GMT -8)
I’ve been told it really only matters in the event that some day you have to have surgery directly related to it. Then knowing which you have is super important. But other than that, it really does not matter, the treatment is the same.

That’s what I have been told.

I too had some anxiety over this. Not knowing which I actually had. I have let that go.
Posted 1/30/2023 6:02 AM (GMT -8)
Did the dr take biopsies when he did the scope? If so, what did the report state, if you have a copy of the report you can post the results here.
Posted 1/30/2023 10:33 AM (GMT -8)
Biopsies will be the deciding factor in terms of diagnosis. My doctor said the only major difference in treating one vs the other is if you have surgery, otherwise treatments are pretty much the same.
Posted 1/30/2023 10:52 AM (GMT -8)

straydog said...
Did the dr take biopsies when he did the scope? If so, what did the report state, if you have a copy of the report you can post the results here.

Thank you all for your input! Here is a copy of pathology

A. Terminal Ileum, Biopsy:
Small bowel mucosa with no diagnostic abnormality. Negative for active inflammation, dysplasia, and malignancy.

B. Right Colon, Biopsy:
Minimally active colitis. Please see comment.
Negative for granulomas, dysplasia, and malignancy.

C-D. Transverse Colon, Left Colon, Biopsies:
Colonic mucosa with no diagnostic abnormality.

Negative for active, chronic, and microscopic colitis. Negative for dysplasia and malignancy.

E. Rectum, Biopsy:
Rectal mucosa with no significant diagnostic abnormality. Negative for active, chronic and microscopic colitis. Negative for granulomas, dysplasia, and malignancy

Comments regarding Part B:
The morphologic appearance could be compatible with the provided clinical history of ulcerative colitis if infection and
medication-related mucosal injury are excluded


Any thoughts on these findings?

Post Edited (Hmmisme) : 1/30/2023 2:29:53 PM (GMT-8)

Posted 1/31/2023 5:30 AM (GMT -8)
Your terminal ileum shows no signs of past involvement, your right colon has mild involvement now, and your rectum has shown signs of mild involvement in the past, to my knowledge of IBD indicators, would lead me to think it's UC you have. Did you ever have an upper GI endoscopy or capsule camera assessment test to evaluate esophagus, stomach, and small intestine mucosa? The Q of Crohn's vs. UC is important in cases where pouch surgery becomes a consideration. A few forum members posting here who opted for j-pouch creation surgery found out afterward that they actually had Crohn's-- when their pouch then became repeatedly inflamed (because it's formed from small intestine tissue = Crohn's)! So I conclude that it's important to rule out Crohn's whenever possible because it can indeed muck up some types of UC treatment, and also cause proximate organ problems like fistulas. Wishing you good luck with your Rx treatment. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 2/1/2023 7:49 AM (GMT -8)
Hi Old Hat— thank you for the input, it’s reassuring. I have never had an upper scope. It sounds like I don’t have to worry about it yet… and hopefully never because I’ll stay in remission for a very long time 🤞🏼
Posted 2/1/2023 7:54 AM (GMT -8)
Also— one thing about the pathology report that I find strange is my GI told me he saw mild inflammation in the rectum. The biopsy report shows no abnormalities. Does anyone know why that is?
Posted 2/1/2023 9:24 AM (GMT -8)
That sounds like good news. You reportedly had mild inflammation in the rectum more than once, but so far it has subsided w/o causing lasting damage to the mucosa there. It can happen that UC inflammation affects one section of colon more seriously than another; usually that's the rectum. In your case the rectal area so far has come under control fairly quickly so no granular tissue changes appeared in the biopsy specimen(s) taken there as yet. BTW, from your med history it seems that your UC stemmed from hormonal fluctuation during pregnancy. That is 1 of a few recognized paradigms for subsequent development of UC. What you do need to stay aware of is that once a person develops UC, it can always flare anew at any time. That's the nature and mystery of our beast. So the best course of action to prevent additional flares is to find a remission maintenance med that keeps you functioning well w/o bothersome side effects. That's likely what your doctor has in mind when he mentions "down the road". / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 2/8/2023 8:38 AM (GMT -8)
I am in same boat but it only matters when it comes to surgery until than treatment is same. Though I would say ask GI every time you have colonoscopy to look into terminal ileum and document it. Because at time of surgery they may give you option for jpouch if history suggests that your disease is limited to colon. Like my GI said, doesn't matter UC or Crohns, let's see how it develops over time and Time will tell.
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