Anyone been in a 'Gray zone' with the disease?

Okay guys, so I finally changed my GI. After a rigorous internet search, I think I have opted for one of the best docs available in my city. I can't afford to dent my life forever cuz of wrong medication or side effects.

So, this new GI looks at my colonoscopy report and says that there's some inflammation alright, but your report shows no inflammatory markers. He says I'm in a 'gray zone'. As in - I may have IBS and my recent worsening condition may be cuz of Pentasa side effects. OR I could have Crohn's.
He says, out of 10, 5 docs will diagnose u with Crohn's and the rest won't.
For my joint pain also he says it's cuz of Pentasa. And it's really worsened from how it was in the beginning. I have neck and shoulder pain which runs till my fingers. Can mesalamines do that?

He did a Barium X-Ray to see if my Crohn's/IBD/IBS is located further up, will see him today for the final result.
Stopped Pentasa, reduced Entocort's dose by half adnd has given me Imuran (and Librocol also, for 15 days)

He also says he's gonna try and slowly wean me off these drugs and see how it turns out and all, and I think of the whole meet - my parents were most happy hearing this part.

And also, just a random question. Anyone on this board who had Crohn's/IBD before becoming a doc? It's seeming difficult day by day. The herbal guy said I'm having trouble learning stuff cuz of the weakness and the disease.

Bullz,

Good Morning.  When you had your colonoscopy did your GI Dr. do biopsies ? At present, there is no laboratory test that can specifically identify the disease, but routine blood tests may reveal anemia, high numbers of white blood cells, and indications of inflammation, such as a high Sed Rate and increased levels of C-reactive protein.

Crohn's is often suspected in patients with recurring abdominal pain and a family history of the disease, or chronic inflammation of the skin or joints. Colonoscopy is then typically used to confirm the diagnosis, although this can sometimes miss disease that is limited to the end of the small intestine. The definitive test for Crohn's ( although this is debated by many) involves a barium enema, followed by abdominal x-rays that reveal changes in the digestive tract indicative of the disease. Newer tests include CT scan and wireless capsule endoscopy, where a small camera is swallowed and sends images as it passes through the digestive tract.

As medicine is always changing, new tests and treatments become multiple so choosing the best one for you is a bit tricky.  My husband was dx by biopsy and visualization of his small bowel during surgery.  His Dr. dx him as an appy however, when the surgeon saw his small bowel he could see the many ulcers.

Every time he has a scope his GI Dr. does a biopsy - He has been scoped many times over the past 38 years.

I wish you well and hope you find the answers to all of your questions.

Kindly,

Kitt

If there's inflammation in the colon, then you don't have IBS. Plus many people with IBD don't have raised inflammatory markers: there's a thread on the UC board at the moment from somebody who had evidence of severe colitis in their colonoscopy, but normal CRP and ESR. Even my GI has commented to me that some of his patients didn't have raised markers during flare ups.

I don't think you are in a grey zone, I think you have IBD. I would sack this doctor off and find another doctor who thinks the same.

PS: I would take whatever herbal guy says with a pinch of salt. Don't pay for any supplements that you can't comfortably afford. They may not be doing you any active harm, but they are probably not doing you any good either.

To echo what others have said, I almost always have normal markers but I have had inflammation somewhere between stomach and rectum in each of my last 5 or 6 tests (colonoscopy, pill cam, CT scan, etc). My second GI (when I moved) said I likely didn't have Crohn's because everything looked clear on his colonoscopy and I had likely just had ileitis the first time, which enraged me because a colonoscopy is not the be-all end-all determinant of the disease. My current GI is much better, even though she's mentioned that I'm one of her more curious cases.

I had the Prometheus test back in 2009. Not sure it's worth the money if you have to pay out-of-pocket. I came back at over 90% likely that I had UC, which I never figured out how to interpret.