Lizard99 - funny, my nickname in gradeschool was Lizard!
I can sooooo relate! It took a long time for me to be Dx and by that time, I soon went on a two month disability - I was drained. Did ALL the tests and had terrible symptoms all shy of any obstruction, fistulas, etc ... but bad abdonimal pain, scalp sores, D of course, etc ... they found two tiny ulcers in my lower illieum. My GI doc was 'unimpressed' but agreed it was Crohn's and put me on Asacol (allergic reaction) and then 6MP (raised liver enzyme). Went 4 years w/o any RX (mistake).
Fast forward now and having moved back to the Midwest and my new GI didn't think I had Crohn's! I said, I'd like that - let's try that! He took a Prometheus test and it came back conclusive for Crohn's. Six months later I was in the hospital for a bowel obstruction. Funny, in the past six years of this journey, I've only had one slightly elevated white blood cell count and that was years and years ago. I inquired with my GI doc and he said in his entire career, he has never seen that! Other than my electrolytes, my labs or CT scans, etc are never abnormal. Only recent Xray showed blockage.
I only outline these incidents to show you that you can present differently and still have Crohn's.
Question - if you have already been Dx with Crohn's and are having symptoms, why are you not on maintence meds? What is your doc trying to find? or prove? I'd ask what the purpose is .. I shoudl have as I have lots of medical bills in my wake ....
44-single mom diagnosed with Crohn's 2004 via pill camera 6MP kicked into remission (along with modified diet) so went off in 2006.
2009/2010 acute flare and hospitalization - now on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosed hemorrhoids (external as well as internal).
Fibromyaglia; migraines; herniated disks C5,6 and arthritis in neck; asthma; scolisis in back/arthritis.