Hirschsprung's Disease - Personal Experience

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What is Hirschsprung's disease?

Hirschsprung* disease (HD) is a disease of the large intestine that causes severe constipation or intestinal obstruction. Constipation means stool moves through the intestines slower than usual. Bowel movements occur less often than normal and stools are difficult to pass. Some children with Hirschsprung disease can't pass stool at all, which can result in the complete blockage of the intestines, a condition called intestinal obstruction. People with Hirschsprung disease are born with it and are usually diagnosed when they are infants. Less severe cases are sometimes diagnosed when a child is older. An Hirschsprung disease diagnosis in an adult is rare.

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See what others are saying

Comment from: Blessed, 25-34 Female (Caregiver) Published: September 29

I am the mother of a son born with Hirschsprung's disease. He was diagnosed at 2 days old when he failed to pass his first stool. He had the pull through surgery at age 3. He went through 3 years of weekly enemas and herbal laxatives before my husband and I agreed to the surgery. His surgery was a success. That was over 20 years ago, and he did not experience any growth problems. We are fortunate to have gotten early diagnosis and treatment.

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Comment from: Red, 55-64 Female (Patient) Published: November 17

At the age of 30 I had a total colectomy performed due to a megacolon. The specialist and surgeon said the only explanation was that it had to have been caused by Hirschsprung's disease, with which it was very rare to get to adulthood. My colon was double its length and width and they were shocked at its condition. At last my symptoms over so many years made sense. I am now 55 and since the surgery have lived a very healthy life with no more bowel problems. Surgery saved my life! Having suffered constipation for as long as I can remember and doctors telling me that I probably had irritable bowel syndrome, etc., made me think I was imagining it and that no bowel motions for 3 or 4 days was normal for some people! Looking back, I should have pursued treatment and pushed the doctors to send me for tests. Removal of my large intestine sounded crazy at the time, but necessary and I have never looked back. My sympathy goes out to anyone who has suffered this debilitating disease. Please don't be afraid of major surgery if it is necessary, as it has made such a difference to me.

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