Un-Diagnosed With Crohn's

[sgs006]

So I've been told for 10 years that I have Crohn's from one doctor. I recently moved and got a new GI doctor who looked at my records and had me do a CT Scan. Basically, I have never once shown any signs of inflammation and never tested positive for Crohn's in biopsies. He says I do not have Crohn's. I'm not sure how this happened. I've been living with this for 10 years. He says my symptoms are only IBS.
Does anyone have advice on how I should proceed? Should I call the old doctor and say what this doctor is saying? Should I get a third opinion before stopping medications? Let me know what you think I should do. I'm just very scared. It is hard to go from thinking you have this disease for 10 years and suddenly it was all a big misunderstanding. I feel very lost.

 

[JaimeM]

I would get another opinion. Get the Drs notes from your prior dr.. Look through them yourself if you have to.. What tests did they do for your initial diagnosis.. Also they can do lab work that pretty much tells exactly if you have crohns.. I think it's the s.cerevisiae blood test, something like that. I'm sorry you are going through this.. I can only imagine.

 

[sgs006]

I have had 3 colonoscops, a recent CT Scan, numerous blood works. All were negative. I've never even shown signs of inflammation according to the reports.

 

[JaimeM]

So what medication were you on?

 

[sgs006]

I was on Pentasa and Dicyclomine

 

[JaimeM]

Hmmm have you talked to your old dr? I mean the Dicyclomine looks like it can help with IBS also but the Pentasa doesn't make much sense if they didn't think it was crohns... TBH this was my fear forever that they were just saying I had Crohns bc I was never really that sick.

 

[sgs006]

Yea, I called the doctor and they said they found some inflammation in my ileum but not other signs of Crohn's. The Pentasa was for the ileum apparently. They say he never diagnosed me with Crohn's but he sure talked like I had it and mentioned it in conversation several times. I think he didn't communicate it very well if he thought I didn't have it. This is just a weird and scary thing. I feel like I'm back where I started and noone knows why I have weird stomach issues.

 

[ronroush7]

Have uoi hsf s fecal calprotectin. It is a stool test that measures inflammation.