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Were you 1st diagnosed UC then Crohn's?

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Crohn's Disease
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Posted 5/20/2014 4:00 PM (GMT 0)
Back in September I wound up in the hospital with my first flare and signs of IBD. After a colonoscopy, my GI said I had pancolitis. I was able to taper off of pred through October, and placed on Lialda, but in November I started having a lot of difficulties digesting food. My GI did another colonoscopy and found a completely normal colon, no signs of UC. He said he's never seen such an extreme case of UC change so quickly, that I was in remission and my digestive issues are due to IBS. For the last few weeks, I've been in a much worse flare, can't taper down the prednisone. My GI said that the disease is much deeper than we'd anticipated and that he believes I have Crohn's instead.

I'm just wondering, did you first get diagnosed with UC and then have it changed to Crohn's? If so, can you please share your story with me? I'm feeling very overwhelmed.

Thank you
Posted 5/20/2014 5:26 PM (GMT 0)
Kind of? My first diagnosis was ulcerative proctitis. My GI only did a sigmoidscope so he couldn't know that I also had inflammation in the cecum. It was several years later that I got scoped again and got that news. Even with this info, and also inflammation in the TI, my GI (I'm on my 3rd) has not said whether I have UC or Crohn's.

I'm sorry that you are struggling with finding the right treatment. The first months (or years) of IBD often looks like this.

What is your GI's approach now? If the colon is inflamed on biopsy only, you need to discuss treatment other than mesalamines. Is there inflammation above the colon too?
Posted 5/20/2014 9:53 PM (GMT 0)
First I was diagnosed with UC. Then later after more several more colonoscopies and a new GI I was told I had Crohns. This was determined mainly because of the patchiness of my inflamation. UC is more solid I guess. It sucks I know. I had more hope when I thought it was UC because if I removed my colon I would be cured. Not so with Crohns. Still treatments otherwise are pretty much the same. I was in the hospital a lot last year but so far this year Humira and Methotrexate have got me functioning at least. It took me a long time to get off the Prednisone. I was on it almost a year because every time I tapered I'd flare back up.
Posted 5/21/2014 12:44 AM (GMT 0)
I was, then I got a fistula, so they determined it was CD.
Posted 5/21/2014 4:40 PM (GMT 0)
You know I still am not totally convinced I have CD. I have yet to have any other symptoms like a Fistula or anal fissure.
Posted 5/21/2014 5:11 PM (GMT 0)
Scum1, I think only about 15% of CD patients have fistulas (somebody else remember the percentage?).

Anyway, I was diagnosed by my first GI visit as suspecting I had UC. But it was as Kazbern said; it was with a proctoscope so he couldn't see past my sigmoid.

I later had some doozie flares that led to sepsis and the diagnosis came back as CD. I developed a couple of fistulas after that, which clinched it in my mind. When I sought out a new GI in a larger city, he tried to change my diagnosis back to UC, stating that my ileum involvement was backwash of UC, totally ignoring that I had fistulas. The surgeon my GI sent me to told me that he didn't see fistulas in UC (though it's not impossible) and changed my GI's mind only after I had colon surgery. It really mattered when I went in for colon surgery because the entire colon needs to be removed with UC, so I left it up to the surgeon to determine whether I had CD or UC and operate accordingly. That's what he did, leaving me 2/3 of the colon. That was 13 years ago, and I'm positive he got it right, unlike my ding-dong GI.
Posted 5/23/2014 2:55 PM (GMT 0)
Thank you everyone for your posts, they've helped me a lot.
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