Hershrung's Disease

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babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 639
   Posted 7/10/2010 9:22 AM (GMT -6)   
Does anyone here have it? My drs think I do although I have not been tested for it. From birth I could not have a bm without an enema or laxative. When I was 22 I had a colostomy. I actually begged my dr for it because I could not take the pain of not going for weeks/months. I am not 26 and am researching this disease. I have all of the symptoms but the treatment is either an ostomy or a "pull through" surgery. I've read that some people cannot have the pull through method and need an ostomy anyway. I'm looking for anyone that might have had something similar to this disease. Most cases are taken care of in childhood but mine was not due to my parents not having insurance.
Michelle

~Nissen redo 05/10/10~
~Nissen 12/14/09~


taurus
Regular Member


Date Joined Jul 2007
Total Posts : 65
   Posted 7/10/2010 5:13 PM (GMT -6)   
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.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 7/11/2010 11:12 AM (GMT -6)   
Michelle, have you had an anal manometry? Me and my doctor thought I had hirsprungs disease until the anal manometry ruled it out.
Diagnosed with colonic inertia, anismus, rectocele, and intussusecption

Surgery June 21, 2010-subtotal colectomy, rectopexy, and a temporary loop ileostomy

Take down-TBA


babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 639
   Posted 7/11/2010 11:17 AM (GMT -6)   
Taurus, I spent the my first two years in Children's Hopsital and they couldn't figure out what was wrong. I lived on laxatives for 22 years until I had the colostomy. It was an awful childhood, had a lot of ups and downs.

I have not had any tests done recently. I'm not even sure if I want to do the tests to see if that's what I have. I might just keep the colostomy but wasn't sure about the outcome from the surgery.
Michelle

~Nissen redo 05/10/10~
~Nissen 12/14/09~


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 7/11/2010 12:47 PM (GMT -6)   
Michelle, I have also struggled with constipation and just 3 weeks ago had surgery. I now have a temporary loop ileostomy and I feel wonderful. My doctor has faith that I will be able to poop normally after my connections heal, but I am worried about having the take down, not to mention having another surgery. UGH

If I were you, I would have the anal manometry to rule out hirsprungs disease. What other tests have you had?
Diagnosed with colonic inertia, anismus, rectocele, and intussusecption

Surgery June 21, 2010-subtotal colectomy, rectopexy, and a temporary loop ileostomy

Take down-TBA

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