I started having abdominal pian in September 2009 (sudden onset). I was sent to the ER where apendicidis was ruled out and I was refered to a GI doctor. I've had multiple colonoscopy's, follow-throughs, upper GI's, one pill camera, and CAT scans. Every test showed thickened intestinal walls of the terminal illium, portions of the small intestines and colon. I have been hospitalized twice and placed on solumedrol both times and it has been effective. The initial DX was Crohn's but after almost two years my Dr. changed the DX to IBS due to all the biopsies coming back negative. I have never had any blood tests to confirm or deny Crohn's. I respond very well to oral and IV steroids, I was on a 160mg/day pred dose and switched to 9mg/day budesonide. The flagyl and cipro failed to do anything and no appreciable difference was noted from Asacol.
So here's my question: Is is possible to be mis-diagnosed with IBS while actually having Crohn's. I received all my Dr's notes recently and he noted that I had received treatment that I have never tried also. Thank you for you help and suggestions.
I hope some doctor responds to your question. The thickening in ileum and small intestine could point towards Crohn's. Are you still on steroids and/or anti-inflamatory meds? How about your CRP &ESR. Mine would keep fluctuating I.e. High with a flare and going down after meds for a few days.
It would be a breakthrough case if you have correctly been treated for Crohn's and now correctly downgraded to IBS...someone with medical training pls respond.
So your GI doctor diagnosed you with CD based only on how it looked, even though all biopsies were negative? If you got your doctors notes does it include your lab work? CRP, sed rate, ESR... Any of them not in the normal range? I've heard of IBS turning out to be Crohns or Crohns and UC being switched, but never bring "down-graded". I have IBS on top of my Crohns which is possible.
Honestly, I'd take all those records and get a new GI doctor or at least a second opinion.
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