Posted 7/10/2010 11:13 PM (GMT 0)
Do you mean "Hirshsprung's" Disease? Because if you do then I have it. I think.
My new doctor is having doubts about my diagnosis. I was diagnosed when i was 4 years old. Problem is, Hirschsprungs is a disease that shows up in infancy. So the docs see the signs of it and can diagnose right away. Then a temporary colostomy/ pull through surgery is usually done when you are a baby. Since I was diagnosed as a toddler my new doctor has his doubts that I have it. Especially since my Mom was the one who initially "diagnosed" me. I had problems going to the bathroom, bloating, etc.... She took me to doctors and they all said nothing was wrong with me. She did research on her own. Back in those days you had to go to the medical library because there was no internet obviously. So she found Hirschsprungs and all the symptoms matched with mine. She couldn't pronounce the name so she wrote it on a piece of paper. She then took me back to the doctor and told them she thinks it what I might have. They did the tests (barium x ray, rectal biopsy, manometry) and she was right.
I have had problems going my whole life. Have had numerous colostomies. One ileostomy. J Pouch and subtotal colectomy. Unfortunately, I am still struggling. Had a "deep tissue" rectal biopsy a few months ago and it showed "decreased ganglion cells". Which could mean there is still Hirschsprungs in the rectal cuff I have left.