Colonoscopy says UC, Prometheus says Crohn's - Confused (cross posted on UC board)

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New Member

Date Joined Jul 2009
Total Posts : 14
   Posted 7/1/2009 9:59 AM (GMT -7)   

Hi, I am new and looking for opinions.  I was just diagnosed with Ulcerative Colitis on June 22.  At the beginning of June I started having extreme joint pain and my feet developed large spots on them and were very swollen, which would get even worse when I would stand.  I couldn't do anything but sit on the couch with my feet elevated.  I could hardly get up or walk by myself.  I also had spots on my legs, some sores in my mouth and diarrhea with blood.  For the past 5 months I have had diarrhea for the two weeks following my period.  I have had problems for years with urgency, loose stools and diarrhea.  I went to my PCP and they had no clue what was wrong with me, but sent me to a rheumatologist.  He thought I had an infection and eventually admitted me to the hospital, where I stayed for eight days.  There I saw an infectious disease doctor who had me see a dermatologist.  They did a biopsy of one of the spots on my leg and the results came back positive for Erythema Nodosum, an inflammation of the fatty tissue.  They were ready to leave it at that, but I pushed to get an answer about my chronic diarrhea. 

The GI did a colonoscopy and told me I had UC, which caused the Erythema Nodosum.  She also did a biopsy during the colonoscopy and took blood for the Prometheus test.  She said there was still a chance I could have Crohn's and this would help determine that.

Here is where I am looking for opinions.  Her office called today with the lab results.  Unfortunately, the person who called was kind of clueless.  She said the Prometheus test came back positive for irritable bowel syndrome (she kept saying this and not inflammatory bowel, so I guess that is what she meant) and Crohn's.  So, I said "okay, so I have Crohn's and not UC".  She said it looks like I have 'some' Crohn's or something like that.  She then said the biopsy showed signs of IBS and colitis.  So, she told me the doctor said to stay on my medication and she would see me at the follow up appointment on Monday.

So, I am very confused - do I have Crohn's or UC?  I know I will find out on Monday, but would like to know where to focus my research over the weekend, so I make sure I have a good grasp of the disease before my appointment on Monday.  I want to be able to know something about it before my appointment, so I better understand everything she tells me.   Has anyone ever had these results, if so what was you diagnosis?

Thanks so much and sorry for the lengthy post!

Veteran Member

Date Joined Mar 2006
Total Posts : 1169
   Posted 7/1/2009 11:02 AM (GMT -7)   
I think I would want to know more specifics about the pathology report on the biopsies. Granulomas are present in abuot half of Crohns biopsies but not in UC. Also, biopsies will often show the depth of the inflammation, which goes deeper in Crohns. Unfortunately the two diseases are sometimes tough to differentiate, but on the plus side many of the medications available are effective for both. Sometimes it is a medical mystery that only time and follow-up scopes can address. As for the Prometheus test, I have heard a wide range of accuracy estimates, but I do not think it is 100% conclusive.

New Member

Date Joined Jul 2009
Total Posts : 1
   Posted 7/3/2009 5:36 PM (GMT -7)   
I got diagnosed with UC March 06, in September 07 the doc said it was chrons and the only difference was thet they put me on humira.

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 7/4/2009 7:30 AM (GMT -7)   
It might be a bit hard to tell. Did you have a pill camera done?  (it is something to think about because the reason why I suggest a pill camera is to be vigilant because it will show areas of the digestive system that a normal egd and colonscopy can miss) Because if you have ulcerations higher then the colon the it is crohns. Nothing is ever quite perfect when dealing with these darn diseases.

Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 7/4/2009 8:39:06 AM (GMT-6)

Veteran Member

Date Joined Dec 2005
Total Posts : 637
   Posted 7/4/2009 3:01 PM (GMT -7)   
I guess you could search google, try searching for "different types of crohns disease"

I got these, there are 5 different types, it may help....
CD dx @ 13 (1987)
Prednisone 20mg every other day
Phenergen PRN
Zantac 150 - Twice Day
Pain Meds

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