Patient Comments: Hirschsprung's Disease - Personal Experience

Was your child or relative born with Hirschsprung's disease? Please share your experience.

Comment from: ktm, 25-34 Female (Caregiver) Published: March 10

We need more long term information on Hirschsprung's disease for families. Our first son was born with Down syndrome in 1986. In 1988 he was diagnosed with Hirschsprung's. His brothers do not have either condition. At 3 years old, 1/3 of his lower intestine was removed and he had an ostomy. Three months later the ostomy was repaired with a pull through operation. He had loose stools for years. He was fecal potty trained at age 8. With blood tests and nutritionist's advice he takes vitamin supplement and follows gluten, dairy, corn, and soy free diet; like Paleo. He has had fecal staining often. He is 30, and it is worse. We are suggested annual gastrointestinal (GI) checkups with a knowledgeable GI specialist.

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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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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: Shazza, 25-34 Female (Caregiver) Published: August 29

My son was born with Hirschsprung's disease. He was operated on at eight months, had a colostomy for four years and then ileostomy for life as he was very ill. He is very small in height and of small structure. He has other medical conditions also. Main problem now is obstructions, for which he has to be hospitalized. But can't thank the surgeon and doctors enough.

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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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Comment from: constance, 3-6 Female (Caregiver) Published: February 18

My child had severe constipation. She had done a barium enema and a biopsy had been done too and the result came out normal. She is still having the severe constipation and rarely passes stool, I am concerned it maybe Hirschsprung's disease.

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Hirschsprung's Disease - Symptoms Question: At what age did your infant or child develop symptoms of Hirschsprung's disease? Please discuss your experience.
Hirschsprung's Disease - Surgery Question: Did your child have surgery to treat Hirschsprung's disease? Please share your experience.

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