Getting a diagnosis??

Hello, I posted at the IBS forum but maybe I belong here. Not sure. I had very bad abdominal pain last summer - went to ER. CT scan showed a thickening of the right intestine, which was interpreted as diverticulitis or colitis. I was given Flagl by IV and then sent home with ten days of Cipro and flagyl. The flagyl was hell and didn't really help that much. In October, I had a colonoscopy and an EGD. Colonoscopy showed no diverticulitis but some swelling of the terminal ileum. Biopsy was negative. I had the Prometheus blood tests - negative. Pill Cam in January - negative. By this time the pain was gone and I chalked it up to one of those strange things that happen and wnet on with my life. But now it is back. I had an episode in May that lasted about a week, and then again in June and now. I have a few days that I feel great and then a week or so of pain and terrible bloating. The pain feels like my insides are on fire and it is not centered in one place but diffuse and seems to move around, even my lower back hurts. I called to make an appointment with the GI doctor. Busy person - can't get in until October. But what can he do anyway? Have I not had all the tests for Crohns? And what would make the terminal ileum swell other than Crohns? I am a very unhappy person right now. :-( Any insights or advice would be sooo appreciated. Thank you.

Thank you so much for your reply. I did not know there are specialty IBD clinics. I go to a large, well respected general gastroenterology practice. My doctor claims a special interest in IBD and IBS. i just googled IBD clinics and there is one at a big university hospital not too far from here. I will look into that.

My course sounds similar to your. I was in my 20's (and that was a very long time ago ;-) when i first started having problems. Was diagnosed with Crohn's based on the testing available at the time. Put on a medication, whose name I can't recall. Only took it for short time. All was well, and life went on, with interruptions for gastro problems and surgeries - appendectomy, gall bladder and surgery for endometriosis. But I have never had an issue that comes close to this past year.

i did not know that the blood tests were unreliable. I had to go to a special lab associated with the medical school here - my local hospital did not do the test. So i thought it was a big accurate deal.

Anyway, thank you again for your reply and suggestion. i truly appreciate it.

Hi scoot50,

It took 6 years for me to be diagnosed and similar to Cindy in the fact I had an ER visit and they thought my appendix was about to burst. Rushed off to surgery to remove my appendix only to discover I had Crohn's disease. This was back in the 70s and I took Azulfidine, Prednisone, Flagyl and Imodium for the Crohn's once discovered.
During the 6 years, I had numerous hospital stays, weeks at a time for tests, saw a psychiatrist and they could never pin down exactly what had been wrong with me.