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Diagnosis issue. Help needed

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Crohn's Disease
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Posted 1/24/2010 2:16 AM (GMT 0)
I am hoping you can help. My partner was diagnosed with Crohn's after a ton of gastric issues, a colonscopy, MRI and labs. She was put on pentasa and has some success. A couple of years later, she was referred to a new gastro who said she did not have crohns after examining results of colonscopy. Later-called her and said she did after receiving results of blood work. Now a couple of years later another new gastro has said NO crohns after her latest colonoscopy. What is going on? She has these periods that could last weeks or even months where she has horrible diarrhea and vomiting and severe pains in her stomach. She also has significant joint pain.

Has anyone been through this--you have it you dont thing?

Is there not a definitive test or diagnosis protocol?

If she does not have crohns...what else could it be?

I have a pretty severe case of IBS but her illness is so much more severe than mine.

I appreciate any help that you could give me. She is really discouraged and does not know where to turn now.

Thank you.
Posted 1/24/2010 3:56 PM (GMT 0)
Hi lorettalru and welcome to Healingwell. I think she should try getting another colonoscopy with biopsies this time. The biopsies would tell if her she has Crohns or not. Sounds like it to me. Good luck and hugs to you both!
Posted 1/25/2010 3:04 AM (GMT 0)
Sometimes I think the trick is getting the test during a flare up. We see the Dr.s when were sick but wait for the test and by then the problem has cleared up. This I believe is why I was missed 3 times throughout my life.The 4th time I was so sick anyone could have diagnosded me.
Posted 1/25/2010 3:13 AM (GMT 0)
It took me 1 1/2 years to reach a diagnosis and I had a colonoscopy and every other test. It finally took two tests to finally confirm Crohn's: a pill camera which I followed and I think it is one of the only ways to get into the lower ileum. They found two very tiny little bleeding ulcers. My GI doc in CA was somewhat suspicious if it was Crohn's, but combined with my symptoms which are similar to which you speak, he reached that diagnosis. Besides, I went into remission on Imuran (6PM) which would point to Crohn's.

Then, recently I moved back to my hometown and my new GI doc questioned my Dx too. So he ordered a genetic marker /blood test called Promethus test and it came back consclusive for Crohn's.

You may want to check into other tests ... a colonoscopy as a small bowel panel (blood tests) are only the first line of them. I should also mention that a colonoscopy will not reach the lower ileum which is where Crohn's can be a problem. Additionally, I am an anomoly in that all my sed rates / white blood cell counts and C Reactive Proteins are all normal even during a flare. So that threw docs off the Crohn's dx trail. Where I am going with this is that if your partner is having severe symptoms than these need to be addressed and she should perhaps go back to the drawing board again or see another doctor. The symptoms will only create additional inflammation ....

I wish you both the best ....

Post Edited By Moderator (Nanners) : 1/25/2010 7:30:46 AM (GMT-7)

Posted 1/25/2010 3:20 AM (GMT 0)
Hello and welcome to HW.  Like states above, I think the object is to have a colonoscopy when in a flare.

When I was first dx, I was so sick and could barely walk almost wheelchair bound. It took the docs

3 months to figure out what was wrong with me. When I finally got sent in the right directions

and had my first colonoscopy, my colon was so bad I was admitted in the hospital pronto and

told I had crohn's.  Well after I wasn't getting better on just predisone, he referred me to

a GI doc who specializes in Crohn's, my first few scopes with him he really didn't think I had crohn's.

But was treating me for it.  Until once I was finally having a bad flare and he did a scope and

saw it.    Good luck and I really hope your partner gets solid answer soon.  

Oh I also had the blood test for it and my test came out as I didn't have crohn's.  Its a crazy

disease thats for sure.

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