Hi all. I'm new to the UC board and frustrated! I could use some support, and apologize in advance for the length here.
I would say I have a weird story but I guess all stories of IBD are weird, eh? So, here goes, my "now you have it, now you don't" story with IBD:
I went to my PCP in 2005 for a routine check up. She said my stomach sounded "loud" and asked if I'd been having trouble. I told her I'd been having some stomach aches but put it down to the end of the school year stress (I'm a teacher). Since I'd experienced weight loss too, she decided to run the Prometheus lab marker test for IBD. I'll never forget when she called to say it came back positive for IBD, more for Crohn's than UC. I couldn't believe it.
The colonoscopy confirmed the diagnosis on visual examination and on biopsy, though it was indeterminate between UC and Crohn's and "moderate". Get this, though: I STILL had no blood and NO DIARRHEA. Diagnosed before a flare...bizarre, right? My first flare came six months AFTER diagnosis, complete with fever, joint pain, gripping pain and horrible diarrhea. That's when I really knew I had IBD.
Since then I've switched GIs a couple of times. Each dr. seems convinced I don't actually have IBD. I don't know if this is because it was indeterminate or what, but I finally went to a well-known, nationally respected physician who demanded my original pathology slides from 2005. He was convinced I did not have IBD. When his hospital reexamined the original slides, sure enough, they came back indeterminate IBD. He said only 10% of IBD patients have this diagnosis and it's usually a severe case, but for some reason my case is mild. But he then retired, precipitating another GI switch.
Well, you can guess what comes next. New GI won't believe the nationally-recognized GI, even though he claims to "respect" him. I'm off all IBD drugs and, sure enough, am ramping up with the diarrhea again and coming into my flare season (fall). He won't put me on any IBD meds until he runs another colonoscopy to re-re-re confirm the diagnosis.
My last few colonoscopies have come back with no inflammation, I think because I was on IBD medications. Although it seems illogical, I'm almost afraid he won't find anything and undiagnosed me with IBD....because I KNOW something is wrong with me. I've had problems with chronic abdominal pain for years, which is a whole 'nother saga I won't saddle you with.
I'm just wondering if anyone else has experienced an "odd" case of IBD and, if so, are your physicians constantly questioning your diagnosis and denying you medications? Do you press the issue and, if so, how? Does it help to keep reminding them of the original diagnosis? It's like this: they give you medications that help and then, when the medications HELP, they say "Hey! Maybe nothing was wrong in the first place!"
It's crazy-making. I'd be happy as punch if I never had IBD....if 2005 never happened. But even today I had to run...and I mean RUN...to the bathroom twice, and I barely made it. And I know this is just cranking up. :( Help!