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: blws85, 25-34 Female (Patient) Published: April 11

I am so confused. I was diagnosed with having small segment Hirschsprung's disease at the age of 19 after suffering with chronic, severe constipation my entire life. Though, my doctor did never mention surgery, she only said that later in life I could need an ostomy surgery, but nothing about having it right now. She just kept me on Miralax (which is the only thing that has ever helped me have a bowel movement). I am 28 now and have been taking Miralax almost every day since I was 18. I wish she would"ve done the surgery, perhaps I wouldn"t be having to take the Miralax all the time. I"m so worried about colon cancer too because of all of this.

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Comment from: Evie, 7-12 Male (Caregiver) Published: June 04

I am at a loss. My grandson had a pull through procedure for Hirschsprung"s disease at the age of 2, and stoma fitted for 12 months. Then he had a reversal. Since then he has had a number of washouts which do not seem to work. My grandson is now in full time education and is getting teased about him smelling. He has moments where he is having fecal leakage and he does not know it is happening. This has been going on for a long while now. He has been back to see the doctor on a regular basis and they reckon they can't find anything wrong. He still has a very bad blockage and they keep giving him enemas and Movicol which makes the leakage worse.

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