Rant time: Doc doesn't think I have Crohn's

I met with my doctor today to go over my scopes and SBFT. Everything looked fine and good. No evidence of Crohn's. No reason for my symptoms.

He then goes onto to say he's not sure I've ever had Crohn's. He's not the doctor who diagnosed me, but has reviewed my files. He says I definitely had ileitis in 2006, but because there were no granulomas, it could have been because of something other than Crohn's. But I am certainly not in a flare now, even though I had classic flare symptoms for about six weeks until I started taking prednisone.

My doc says I'm a "unique" case. In other words, he has *no* idea what is going on. Not sure if it is IBD, or just IBS, or something else entirely. He drew blood for a CRP, sed rate, and Prometheus test, but I'll have to wait two weeks for that. I'm also getting a referral for a rheumatologist, to deal with my joint issues, which are coming back. And I get to start tapering my pred and hope it doesn't make things worse.

Part of me wants to be happy, knowing that I may not be stuck with this disease. But the vast majority of me at the moment is having a hard time handling this -- the uncertainty, the questioning if I'm just crazy and over-reacting, and potentially having to come to terms with some other health issues, after I've spent the last four years coming to terms with Crohn's. This is just so frustrating! I know there's something going on, but not knowing what anymore is killing me.

Left in the lurch - well, there are several here who have had to wait years to get their diagnosis. You can have microscopic Crohn's and that would not appear on the SBFT and unless they could do several biopsies of your ileum, they might not detect it. There are several possible causes of a Crohn's-like illness, including Addison's and diabetes and a general condition called SIBO (Small Intestinal Bacterial Overgrowth) which can be caused by a wide range of illnesses and drugs. Pancreatic insufficiency or gallstones causing intermittent blockage of the bile duct can be another possibility. Even things like Proton pump inhibitors (for GERDs) or excess fat in the diet can cause a mild form of SIBO. For a bit of background, see: http://www.medicinenet.com/small_intestinal_bacterial_overgrowth/article.htm

Your story sounds almost identical to mine. I went to a different GI who could find NO evidence of Crohn's. So even though I had been dx the previous year, via scope and biopsy, he speculated that I was misdx. He said he had no clue what was wrong with me THEN, but that I probably had IBS. I went the next 5 years not knowing what I had, but I was in remission, so I really didn't care. I flared back up last month and he did another scope and still saw nothing. He did prometheus tests which were fine. Then the biopsies came back and confirmed mild crohn's. So he finally believes it and is treating me for it.

It was incredibly frustrating to have one doc say I had a 'classic case' of crohn's and another doc say I was probably misdx. I'm glad it's all straightened out now and I hope it straightens out for you as well. It definitely gets frustrating though.

Were biopsies taken during the colonoscopy?

I feel frustrated too... I had a colonoscopy that showed large ulcers on my intestines, and biposies that showed Crohn's as a potential cause, so that's what they diagnosed me with... I started taking medication for it (Mezavant) and four months later had a repeat colonoscopy... the ulcers were gone.  Then the specialist started to doubt his initial diagnosis as he said Crohn's wouldn't usually heal itself that quicky... so now they are trying an experiment whereby over the course of several months they reduce my medication until I am not taking any... and if I get unwell that would confim I have it, and if I'm ok that would suggest I don't... but what worries me about this is that if I do have Crohn's, by not taking the medication I could be causing myself damage and leaving myself open to a flare further down the line.  Has anybody got any advice about this?  It's kind of a catch 22 situation - I don't want to be taking medication for the rest of my life for something I haven't got, but then again I don't want to become ill because I didn't take medication when I should have.

Anyway, back to the point, it's frustrating not to have a confirmed diagnosis, especially when you don't feel 100% well and know that something isn't quite right.  And it's hard to know what to tell other people - do you tell them you have it, or you maybe have it, or something else?!  Hope you manage to sort your diagnosis out Vitak.

Ria

Ria, a lot of others on this board have gone through this in getting a diagnosis. I have found that being able to talk it out has been a huge help. As for cutting down on your meds, I agree it is quite risky. Maybe you should get a second opinion?

I, too, have no idea what to say anymore when I'm talking about my illness. Do I say I *think* I have IBD?

MMMNAVY, it was just the normal three footer. My GI said he peaked into the duodenum. I had the SBFT to check out the rest of the small intestine and that was clear too. I was surprised by that because I've had symptoms of partial obstructions twice before and thought I might be having a third due to the daily nausea I was experiencing around the time of the procedure.

I feel all of your fustration. I am currenty going through the same thing, right now  the doc may think I do have crohn's the Humira has put it in remision but I might have endometrioses like other poster's but I have a feeling this isn't the case either but I will have to wait and see what the obgyn has to say!

My first question was : Can I get off all of the meds. The doc said no probably because the crohn's will come back.

 

ok that just completely annoy's me that your doc would make that kind of dx without doing the long EGD. When I finally had mine done it was were the worse part of my disease is.  Which did not show up on my sbft, but did show up on pill cam.