Colonoscopy says UC, Prometheus says Crohn's - Confused

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New Member

Date Joined Jul 2009
Total Posts : 14
   Posted 7/1/2009 11:43 AM (GMT -6)   

Hi, I am new and looking for opinions.  I was just diagnosed with UC 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 Feb 2009
Total Posts : 1916
   Posted 7/1/2009 1:28 PM (GMT -6)   
Welcome klm. Sounds like the person who gave you the lab results didn't know too much about the tests.
I am somewhat of a newbie myself and had a very similar experience. I wrote in about my results with prometheus about a week ago. I did get a few responses and most think the lab tests are pretty unreliable-:) There are some veterans here who gave that response and I trust their opinions. It will be interesting to hear what your doc has to say. I have not seen my GI doc, my PCP did the tests because I wanted them. I don't see him again for another 4-5 months. So, for my colitis, they told me it was diverticular colitis, which is a very unusal form of colits associated with diverticular disease (pouches in the intestines.) However, I think I have UC or Crohn's because of the test, joint pain and rashes. Until my biopsies came back the GI doc had no idea what I had for sure, just a lot of inflammation. The joint pain is totally gone (I hate to jinx myself) and the rashes are better. Also, I think sometimes people's diagnosis changes. Most of the meds are similar for the two diseases. With UC, you can always have your colon removed for a "cure" and with Crohn's, there is no cure and it can go from one end to the other of your GI system.
My GI doc thinks I have a benign disease (easy for him to say) , my dermatologist thinks I have an auto immune disease and so does the rheumatologist. So, here is our world!!
How old are you and where did they say you had inflammation in your colon? Sores in the mouth is often associated with Crohn's but again, I am no expert... lol... I am interested to hear what they say when you have your apt about the lab results. Keep us posted, ok? Thanks for writing in about your lab results, it is interesting.... Good luck with getting into remission and feeling better quickly.

p.s. many fill out profiles putting down their diagnosis and meds they are on, but that is optional.
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.

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