I don't know what to tell you except to agree it's frustrating. I am the opposite of you. I have only one symptom (fissures) and was told by my GI it was crohn's although my biopsies, CT scan, etc were normal. I was also told "you can get a 2nd opinion but I wouldn't trust anyone else in town", "your Prometheus test would show positive if you have the gene, but that doesn't mean you have crohn's", just a couple things to cast doubt. So now I've been on Remicade for three years and I don't really completely believe I have crohn's! Plus the 'cade has never completely healed me so I believe there's a chance that it's wrong diagnosis/wrong cure.
I run marathons, for goodness sakes! How could I be that sick???
sorry, guess I'm off topic but you just made me want to open up about being frustrated.
Matthew, I think you and I had the same GI when we first got sick! I had the ulcerative proctitis diagnosis first. Well, duh, if you only use a sigmoidscope you can't see the rest of the inflammation! New doc, better scopes.
Kiki, I think it is a pretty common experience to NOT have a "name" for your inflammatory bowel condition. But I believe calling something "IBS" is just a cop-out. It only means that the DR acknowledges you're miserable, but can't find any "disease" to point to. So then you have a syndrome. An irritable one, too.
Post Edited (CrohnieToo) : 5/13/2010 10:35:55 AM (GMT-6)