Patient Comments: Hirschsprung's Disease - Surgery

Question:

Did your child have surgery to treat Hirschsprung's disease? Please share your experience. Submit Your Comment

Comment from: Marcus, 65-74 Male (Patient) Published: December 22

I was born with Hirschsprung’s disease in 1942. I was taken to the children's hospital but they could not do the surgery then. I had monthly enemas and had large amounts of gas. I had a distended stomach. At 12 the school doctor thought there was surgery. I had a stoma first, no bags in those days, then surgery. I didn't think I’d pull through, my scar is very long. Once my bowels started working the stoma was reversed. I am now 73 and have had little bowel trouble.

Comment from: Kingsley's mama, 3-6 Male (Caregiver) Published: December 30

My son was diagnosed at 2 weeks old. I was told it was Hirschsprung's disease (HD) and he needed surgery. After some research I was not convinced that surgery would help. We went to a good pediatrician who suggested very carefully to manually stimulate his rectum. We did so for a while with bouts of him going on his own. When it got bad we did enemas. All the gastroenterologists ever told us was to give him Miralax and shame on us for never giving him surgery. He is now 5 years old and very healthy. He still has days when he cannot go but for the most part his journey has been a success in my eyes and it's only getting better as he grows to learn about his body. I believe the key is what he eats. I juice veggies and fruits for him on a daily basis. We call it his magic juice because it really is like magic! We keep gluten down to a minimum as well as other foods known to trigger constipation. Start juicing people! It's life changing! He drinks 2 to 3 glasses a day.

Comment from: baby boy frank, 7-12 Male (Caregiver) Published: October 15

On October 7th 2002 I was blessed with my first baby boy. He was 2 lb. 2 oz. at 29 weeks gestation. He developed Hirschsprung's disease or necrotising enterocolitis (NEC) as they called it, so he ended up getting the surgery at 4 to 7 days old. He’s been fine ever since, till now. He’s having a flare up exactly 12 years later.

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