Newbie with Questions

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New Member

Date Joined Feb 2008
Total Posts : 1
   Posted 2/25/2008 9:44 AM (GMT -7)   
Hi, my name is Angela, just trying to hear some opinions on my situation, last October I developed a red, hot swollen node on my shin-noticed my wrist had been hurting asked a doc I work with what he thought the red node was- he told me erythema nodosum and that I should see my doc, went to my doc had tons of labs done, throat swab, chest x-ray and was referred to a rheumy, labs were coming back nl except for slightly elevated protein level, x-ray neg, throat culture neg, saw rheumy he thought maybe lupus- did more labs all WNL- prometheus test comes back pattern consistent w/ crohns-w fibrostenosing in the small intestine- now I have always had issues w/ stomach aches, IBS- constipation issues and sharp shooting pains like I was being stabbed in the rectum at the time I was referred to GI- he didn't feel the test was of that much importance but figured that CT scan and colonoscopy would rule out crohns- has scope and scan done as well as biopsies- all came back neg except they mentioned that I had IBS- went back to GI he felt confident that we ruled out crohns- gave me levsin for bowel spasms and scheduled re-ck in 6mo, told me I prob has some fibromyalgia and some connective tissue prob and to follow up w rheumy- never was told I needed to see rheumy again as he thought it was a GI issue- well I have been having stomach aches that have gotten worse, night sweats, about 8# wt loss, random joint pain in my knees, ankle and back pain (spinal area) nausea, went to see primary MD- she wonders why sm bowel wasn't assessed, ordered more labs and started me on librax, that gave me diarrhea (I guess it usually causes constipation) My doctor is waiting for my newest labs to come back before sending me to a specialist again- I guess I was just looking for someone to comment on the small intestinal issues w crohns, has anyone else had a false positive prometheus?

Forum Moderator

Date Joined Apr 2007
Total Posts : 32602
   Posted 2/25/2008 9:52 AM (GMT -7)   


Welcome to HealingWell and the Crohn's Forum. I am sorry for all you have gone through and now you are awaiting even more test results.

We have many wonderful members and I know they will address your questions.  I wanted to welcome you and tell you we care, so post away and know you have joined the right support forum.


Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
*~* *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~

Veteran Member

Date Joined Mar 2006
Total Posts : 1169
   Posted 2/25/2008 10:19 AM (GMT -7)   
I'm not that familiar with the Prometheus tests, but the overall impression I have from reading many many posts here is that there is no clear, deifnitive diagnostic test or series of tests that will always and conclusively rule Crohns in or out. Iwould say the small bowel tests would be important, as it is fairly common to find no clear Crohns  via colonoscopy and then isolate it in the ileum by SBFT and/or pill camera.

Forum Moderator

Date Joined Nov 2003
Total Posts : 7122
   Posted 2/25/2008 5:43 PM (GMT -7)   
Welcome to Healing Well, angela! I'm sorry to learn of all your medical problems. The fact that you developed erythema nodosom clearly points to some sort of auto immune disease. Your gut isssues certainly warrant a thorough investigation in light of the recent worsening of symptoms. Small bowel Crohn's occurs in about 80% of people that have it. about a third of the patients with small bowel disease have it just in the terminal ileum. The terminal ileum can usually be visualized during a colonoscopy. The other 20+ feet of the small bowel cannot be seen during colonoscopy so the disase cannot be seen with the scope. The small bowel follow through and the capsule endoscopy are two of the tests often used to look for small bowel disease.

The Prometheus 7 Serolgy is said to be 96% accurate. We have had people that have had positive tests with very few symptoms. We have had people with a positive result where the Crohn's has not been found using the typical exams. Whetther these are false positive results or the person is in a phase of remission is impossible to tell.

When your PCP gets those results and sends you off to the GI, insist they do tests to explore your small bowel. Let us know how you are doing ok?
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?

Regular Member

Date Joined Aug 2005
Total Posts : 42
   Posted 2/25/2008 6:30 PM (GMT -7)   
The joint pain and stomach issues have me concerned. I had been dx'd in 1999 about 4 years ago I started getting joint pain more stomach issues and headaches and tiredness well of course its the Crohns all these things are the Crohns. Well can you guess after the extreme fatigue one of the Dr's suggested running a lyme test " just for the fun of it" well of course positive. So lots of time for it to fester, and then try to treat on top of the Crohns is a joke anyway see if they will test for Lyme a lot of your symptoms are of Lyme. You just never know and we need definative answers for optimal care. Hope things get better soon and you get some answers :-) Sorry you had to find us but glad you did. : )

Regular Member

Date Joined Aug 2006
Total Posts : 44
   Posted 2/25/2008 9:23 PM (GMT -7)   
I was told that I have a small canker in my ileum. I was given the impression that I have a slight case of crohn's disease. I have more other body pains aches and problems than in my ileum. I do get some problems, such as bleeding rectally from time to time, but there is a good chance that you may have the same problem that I seem to have. Illusive crohn's, that shows up in other things instead of the problem itself. I have fibromialgia, and I am tired all of the time. I have such a problem with sleep that my doctor gave me provigial which is a drug for people who suffer from nachalepsy. I hope someone finds the problem soon so you can get started on the right path to recovery. GOOD LUCK and welcome to HW!

Veteran Member

Date Joined Oct 2004
Total Posts : 3042
   Posted 2/26/2008 4:36 AM (GMT -7)   
Hi and Welcome to the HealingWell forum. This is an oustanding site and there are good ppl here.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007

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