Patient Comments: Hirschsprung's Disease - Personal Experience

Question:

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

Comment from: Joshua M, 35-44 Male (Patient) Published: November 26

I am the second in the US to survive from Hirschsprung’s disease in 1981. At the current moment I am believed to be the oldest living person with it. My condition was far worse and far more bowel had to be removed than most cases. The effects of this still are very present in everyday life. Mine is a result of a genetic mutation on my dad's side. This occurring in adulthood is even rarer than the 1 in 18 million born with it per year. I had a Swenson pull-through by in 1981. I had signs at 2 weeks and surgeries started at 3 weeks. Had a colostomy bag for the first 2 or 3 years of my life. I have had 20 surgeries, and the fun of self-digital de-impaction to live.

Comment from: Colleen12, 3-6 Female (Caregiver) Published: September 11

My son has been tested for Hirschsprung’s disease and I’m getting results today, as I’ve been looking online I realized how rare it is. He is 9 weeks old and doctors kept saying it was just constipation but with trip to hospitals every week he finally got seen and they have tested him for this. He is on suppositories every day and lactose 6 ml, and never passed stools on his own ever. I’m so nervous for him. He has done the first bowel movement at 4 days old, and once he had done that we were discharged from hospital.

Comment from: Cristiano mama, 0-2 Male (Caregiver) Published: September 04

My son was rushed to intensive care 1 day old, with green vomit, not feeding, very sleepy, and screaming when awake. X-ray showed blockage of stools in stomach. He spent 3 weeks in intensive care with lots of antibiotics. It was the worst time, 1st week I couldn't hold him, and he was having rectal bowel washouts twice a day. The biopsy showed Hirschsprung’s disease. On discharge I was breastfeeding and I got trained to do bowel washouts. I did this on my own twice a day. It was hard mentally but succeeded for 4 months, and then he had surgery. There were ups and downs, but now he is a happy 15.

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.

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.

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.

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.

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.

QUESTION

Bowel regularity means a bowel movement every day. See Answer
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.

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.

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.

Comment from: linda w., 55-64 Female (Patient) Published: May 07

I have had Hirschsprung’s all of my life. I have had ostomy, then herniated through stoma then was reversed back. I still suffer pain, I am lactose intolerant and gluten too.

Comment from: [email protected], 55-64 Male (Patient) Published: December 16

I was born with Hirschsprung’s disease in 1952 I was treated at the children’s hospital. At the time I was the youngest to survive without a colostomy bag. I had about five separate operations over a period of 5 years.

Comment from: JackieZ, 13-18 Male (Caregiver) Published: July 16

My son was diagnosed with Hirschsprung’s disease at 4 and had pulled through but continued to have problems with leakage and so forth and was wearing pull ups to school and also being teased. My son's urologist preformed a procedure called 'Ace'. So what we do every day is a bowel flush in the evening and it keeps him clean. It was the best thing for my son.

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.

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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