Ulcerative Colitis
Do you ever feel like UC takes the backseat to Crohn's?
December 2, 2021
in Ulcerative Colitis
It seems like Crohn's gets the "spotlight" a lot of the time. Does anyone else ever feel this way?
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Care Partner of Adult
Not me, actually, but that's probably because my family is all about UC, so everyone we end up talking with tends to have UC. But I get it. Crohn's tends to sound more "serious" since it cannot be resolved by removing a vital organ (though I don't know if that's such a great thing either). I think that's why I like the term IBD, because it covers a the whole of the problem.
I totally think UC takes a backseat to Crohn's. While I know the worst Crohn's is TERRIBLE, so is really bad UC. And, I hate how people act like you're cured by removing the colon. I have had issues with extra-intestinal manifestations of UC even without my colon. A couple years ago I was diagnosed with spondylitic arthritis in UC and I don't have a colon anymore. And also, having surgery and, now, an ostomy is hardly a walk in the park. I love my ostomy because it has improved my quality of life tremendously, but it's not always easy.
Patient
PREACH! I definitely never want to get on the "one is worse than the other" train, but I do feel like UC gets brushed off regularly. And like you, as someone who has had a handful of surgeries, none of which really went well, I struggled a lot. I suffered a lot. I get really angry when people talk about a colectomy as a cure for UC. To me, a cure doesn't mean long term management of other symptoms. But that might just be me.
I'm a Crohn's patient, so maybe a bit of a weird perspective, but I've always found it really strange when someone says, "So, I was originally diagnosed with ulcerative colitis, but now my doctor says I have Crohn's, and I'm just SO UPSET!" It's something I've never understood, but there are so many patients that have this view that getting diagnosed with Crohn's is somehow so much worse than getting diagnosed with UC. Clearly there's a misconception out there that one is worse than the other, and I think that's problematic for patients regardless of their diagnosis. Getting diagnosed with UC or getting diagnosed with Crohn's really is more about labeling the specific ways in which your disease behaves vs. labeling severity, and acting like it's anything different isn't great for anyone.
Patient
That last line though! Exactly. Its about identifying treatments that work, or don't work, or options you have based on the location of your disease. But some how in that discussion, the idea of one being worse than the other has surfaced. I feel like its frustrating for everyone.
UC patients feel diminished because "it's not as bad as Crohn's", and Crohn's patients feel like they have the worst possible scenario.
Yes! I love Molly’s response that you are “cured” after surgery. That is 💯 not true. Molly, like you I developed AS which, is awful.
I definitely used to feel that some people viewed it this way. Crohns is a more familiar word to those who don't know much about IBD. I used to use it to relate UC to people who had no clue. I would say have you heard about Crohns and they would say yes then I was say its like the brother/sister to it and sometimes that its mainly limited to the large intestine down to the rectum instead the overall digestive system going upward.
I don't think that it ever bothered me really. It all f'in sucks whatever way you look at it soooo were all in the same boat.