How to rule out Crohn's Once and For All

RobinByrd said...
I am having a total colectomy this upcoming Friday, and prior to the surgery they wanted to take some precautions regarding possible Crohn's. So I also had a small bowel series completed where I drank that barium and they used an x-ray to see the areas lit up. It was very interesting. The doctor performing the test said that 9 out of 10 times Crohn's is not part of his diagnosis. So I was relieved to hear that my small intestine looks good...it's going to have a pretty big job starting Friday, so I hope it's up for the challenge! I also was told that one of the only ways to be 100% sure about the diagnosis is done with the splice and dice test they do on the colon once it's removed. : ) Nice, huh?

I do feel it is so unfortunate that not only is our diagnosis tricky, but so is the treatment. I have pancolitis and no medications are working...my body seems to think that Remicade is a joke and though Prednisone does take away some of the pain I have had seriously horrible side effects...super long story.

I wish you all the best!!!

: ) Robin

Robin- good luck with the surgery- you are going to do great!  Re the 100% dx, apparently even the slice and dice is not 100% definitive as far as I can tell, because Jpouch.org is full of people who were not re-diagnosed to Crohn's until years, sometimes even 10-15 years, after their colon was removed, sliced and diced with a dx as 100% positive UC--- only to be re-dx'd as CD years later when CD still shows up.  It is pretty infuriating.  But best of luck.... the nightmare will be over soon and I think you are making the right decision.

Most of the pouchers at www.jpouch.org who were later identified as having Crohn's are managing their disease and their pouch fine on Crohn's medications. Some have had to revert to permanent ostomies. None have regretted their initial surgery decision and most have had better health since the initial surgery.

Sue

Some jpouchers find that the pouch is too difficult to manage with Crohn's so they opt for a permanent ostomy. Having a permanent ostomy does not eliminate Crohn's but if the CD was particularly destructive in the colon/rectum, it ends ongoing problems. I know many CD patients who opted for a permanent ostomy. Some find they eliminate their CD symptoms indefinitely; some maintain on CD meds but are healthy and in remission.

Sue