Patient Comments: Hirschsprung's Disease - Personal Experience

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

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: 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: JustMe, 45-54 Female (Patient) Published: November 27

I was born with Hirschsprung's disease, and it went misdiagnosed all these years. I finally found a doctor that knew what he was doing. Since it went so long undiagnosed, I ended up losing all of my colon and large Intestine and some of my small intestine. I have an Ileostomy. I hate this thing, but it is better than a diaper. On October 28, 2012 I had my surgery, I have lost about 54lbs this past year; and still losing. I eat 7 to 8 times a day, if I do not I will lose a pound that day. I am now down to 124lbs, sometimes I eat more. When the doctor removed my colon it was the size of a football, I was in constant pain. I was wearing maternity clothes because my gut was so extended. I would not wish this on my worst enemy. I live and breathe dealing with this what I call a monster in my stomach.

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Comment from: Shams, 0-2 Female (Caregiver) Published: August 13

I am a mother of two. My youngest was diagnosed with Hirschsprung's disease at 8 weeks of age. Two operations and some Botox injections later, she is doing much better. She still battles with constipation and has a very small build. She was only operated on at 5 months of age, as the surgeon wanted her to gain more weight first. I am relieved that she is much better thanks to a great surgeon and pediatrician.

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Comment from: Momof3, 0-2 Female (Caregiver) Published: July 25

I am a mother of two. My third child was born with Hirschsprung's disease. The biopsy results were negative. She underwent surgery when she was 6 days old and had another surgery 3 weeks later. She passed away when she was 1 month old. I am wondering what went wrong.

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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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