Has anyone been first diagnosed with uc, then changed to crohns colitis ?

Hi Jamie.  This happened to me also.  I thought I had UC, diagnosed via colonoscopy and biopsies.  I had no reason to doubt it really.  Then my next colonoscopy, as soon as the doc was done scoping me, he said that he was 99% positive that I was misdiagnosed and it was Crohn's.  The biopsies confirmed it this time as well. 

I believe that it's just not possible to tell the difference sometimes.  I was so severely ill by the time I had my first scope that my colon had the appearance of pancolitis.  Inflammation everywhere.  The next time though, my colon had the "skipped patches" of inflammation that are seen with Crohn's.  And, the "granulomas" that were present in my biopsies to confirm crohn's don't show up every time I am scoped.  My third scope they were once again nowhere to be found.  I also had the Prometheus test done, confirming CD.  However, there are many who claim that the test is not all that effective.  I am confident in my CD diagnosis, but it took me some time to feel that way. 

 

I would say that since you have a history of fistulas, and your disease appears to be following that "skipped" pattern, that your doctor has good basis for what he is telling you. 

 

I know that it is difficult to accept this kind of change in diagnosis.  Feel free to Email me if you would like.  I went through it all myself, not so long ago.

They use the same meds to treat UC as they do to treat crohns-colitis...of course having CD rather then UC is worse simply because CD can affect the entire GI tract whereas UC is limited to the colon, sometimes involving the rectom...also with UC there are no risks of fistulas because CD can affect all the layers of the intestinal lining whereas with UC it's surfacable only.

Sometimes people confuse hearing "colitis" with it automatically being UC, when infact it could be crohns-colitis or other forms of colitis, like pancolitis and colleagenous colitis.

If you had/have problems with fistulas then it was likely never UC but instead crohns.

:)

What may happen is that there is extensive inflammation that looks very similar in both UC and CD during a scope. It isn't until the pathologist looks at the biopsies and examines the tissue that they can determine miscoscopically whether its UC or CD. Also, as in my case, you can start off with UC and then the inlammation goes all the way into the wall of the colon so that on a subsequent scope, the diagnosis comes back as CD simply because the condition has gotten worse.

I started out as IBS....but that doc was just running a test mill...every patient that went in was told IBS and then scheduled for scoping from top to bottom...given ASacol and Prilosec...I think he was just feathering his bed getting ready for retirement...I never got better, actually got worse with him, so i wnet to the folks at USF...there the doc kept calling it UC or non-specific UC...after two years of the same old stuff and still feeling terrible ..I found another doc in Gainesville at Shands...he refused to look at copies of my old scopes until he had done one of his own....he told me that without a doubt it was crohns...he couldn't understand how it was missed or call non-specific...he said it was classic crohns.  

After what I have read on this site for the last year or so...I think this type of progressive DX is fairly common.