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

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Regular Member

Date Joined May 2005
Total Posts : 75
   Posted 9/10/2007 7:14 PM (GMT -6)   
I was diagnosed at age 6 with UC and now 4 weeks ago with crohns colitis. I am not convinved it is crohns. The new doctor was certain it is crohns bc of my history with fistula surgery and worsening of symtpoms over the years. I had a promethius test done and it came back negative. HE did a colonoscopy and says that it is crohns colitis found in the colon, rectum and part of the ileum. I am doing a  clinical trial for Humira now, to see if this helps.
Anyone else not sure which they may have ?
Anyone tried Humira before ?

Veteran Member

Date Joined Feb 2005
Total Posts : 1146
   Posted 9/10/2007 7:31 PM (GMT -6)   
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.
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Regular Member

Date Joined Jul 2007
Total Posts : 456
   Posted 9/10/2007 7:40 PM (GMT -6)   

I'm in the opposite position.  I was originally diagnosed with Crohn's, and now they're saying it might be UC instead.  Weird, isn't it?  You get used to the idea of one disease, and then they decide it's really something else.  Hang in there.

Elite Member

Date Joined Feb 2004
Total Posts : 20552
   Posted 9/10/2007 10:02 PM (GMT -6)   
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.


My bum is broken....there's a big crack down the middle of it!  LOL  :)

New Member

Date Joined May 2007
Total Posts : 9
   Posted 9/11/2007 3:17 PM (GMT -6)   
Way back in the old days, I was first diagnosed with UC. I had a lousy doctor and I suppose my entire colon was inflamed. I found a fantastic doc (who retired) who was able to diagnose me correctly.
Diagnosed with Crohn's Colitis 1983. Have been on prednisone (life saver back then), Asacol, Azulfadine, Pentasa amd 6MP. Did not follow my doctor's treatment plan, stopped taking all meds about 3 years ago. Had a subtotal colectomy June 2007. Feeling great and following doctor's orders to the letter of the law!!!

Regular Member

Date Joined May 2007
Total Posts : 148
   Posted 9/11/2007 8:53 PM (GMT -6)   
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.

Regular Member

Date Joined Jul 2005
Total Posts : 393
   Posted 9/12/2007 1:24 AM (GMT -6)   
my doc said there is no way mine could ever be mistaken for UC....I guess they look very different although they are cousins

but then again the Crohns is all throughout my large intestine..mostly on my right side

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005. I deal with daily arthritis ALL over my body, cystic acne, & fibromyaglia. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Taking low amounts of Pred now & 3600mg of Asacol currently...Can't wait till I can get back on Remicade, my miracle drug!

Veteran Member

Date Joined Dec 2005
Total Posts : 544
   Posted 9/12/2007 7:18 AM (GMT -6)   

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.

dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
currently on Low Dose Netroxene (started Jan. 19, 2007)...against Dr's wishes, he was pushing for Remicade.  Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose two shots every other week.
Crohns is currently active and has been since April of 2005
51 yrs old

Veteran Member

Date Joined Oct 2004
Total Posts : 3932
   Posted 9/12/2007 1:49 PM (GMT -6)   
You are not alone here. Those who know my story, know I wnt through the same thing. UC in 92, CD in 93. Of course, the crohnies in my support group told me for months that I was also CD. Whatever. Doesn't really matter because if the illness is in the same area, the treat for both is often identical. I just lost the hope of a surgeon cutting the problem out. That was the real blow, though I was never wild about wearing a bag.

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