Patient Comments: Hirschsprung's Disease - Symptoms

Question:

At what age did your infant or child develop symptoms of Hirschsprung's disease? Please discuss your experience. Submit Your Comment

Comment from: jude, 45-54 Female (Patient) Published: June 24

I was born with Hirschsprung's disease and I am so convinced that this is how I ended up with learning disabilities and endocrine tumors; no one can tell me different. I know how I grew up. I had Hirschsprung's since I was an infant and for some reason, I faked the pain; I guess that an infant can fake Hirschsprung's; how an infant can fake it, I will never know. The disease is so incredibly painful and people say the most ignorant hateful things. They tell me I am doing this for attention, hell no, I will do a lot for attention but not fake a disease. I hear that I should eat more vegetables; look into my fridge and you will see more vegetables than anything else. Even in this day and age, we need to educate the public on this disease and what not to say to someone with Hirschsprung's. This disease is too painful and so misunderstood; too sad.

Comment from: Jude Anne, 45-54 Female (Patient) Published: February 04

I still want answers and I won't give up until I get one on why I was not diagnosed with Hirschsprung's disease until adulthood. I did have it since infancy. I am so angry because I had learning disabilities and I had to go to school in severe pain and was bullied. Somehow I made it to college and the day after graduation, the Hirschsprung's gave in. I am also convinced that this disease also caused my endometrial tumors.

Comment from: Avenging Hyena, 45-54 Female (Patient) Published: December 02

Just loads of thanks to the medical industry. I have been severely constipated since infancy and nothing was done about it until the diagnosis came at age 23 of short-segment Hirschsprung's. This disease was discovered in 1886 by Dr. Harald Hirschprung and my doctors could not figure it out. I am currently on four Senokot capsules a day. When all else fails I do drink Coca Cola Classic, and for me, it does the trick. I do deserve an answer on why I did not receive a proper diagnosis. No one should have to live with a disease for over 20 years and not have the proper information on it.

Comment from: 13-18 Male (Caregiver) Published: February 14

My son was diagnosed with Hirschsprung"s disease at 7 days. He was airlifted and had emergency surgery. He had an ileostomy for 10 months and then the pull through. I was told originally he would be very small, sickly and not be able to go to regular school or participate in sports. Today, I am so happy to report he is 14 years old, 6ft 1 and 160 pounds. He takes no prescription medications. He takes a probiotic vitamin daily and 4 salt tablets a day to stay hydrated. He starts on baseball, football and basketball teams.

Comment from: Grams, 19-24 Female (Caregiver) Published: February 07

My 21 year old grandson was born with Hirschsprung's. He had a pull through done at the age of 10. Today he is in pain, with cramps that he says hurts all over. He stomach is not swollen. I hear the rumblings in stomach. This same situation happened about 4 months ago. He does not have a fever, but says he feels like he is burning up. I have given him a Gas-X, potassium tablet and 2 Advils.

Comment from: Blueline1991, 45-54 Female (Patient) Published: November 23

I had severe constipation as an infant. My (late) granny told me they had to take me to the hospital at one point. I grew up with this problem all throughout childhood, teenage years and not adulthood. I have also been diagnosed with bipolar II and more recently, fibromyalgia (2014). I was wondering if maybe I had Hirschsprung's disease and we didn't know it. My infancy was during the early 70s. I will bring it up to my gastroenterologist next Monday (I have a follow up - long story that led to dehydration over the weekend. X-ray in October showed impaction along the walls of the intestines. It is awful to not have insurance, otherwise, I'd have followed up back in October. Anyway, thank you for listening and any ideas you may have on this inquiry.

Comment from: RandyDtg, 55-64 Male (Patient) Published: November 17

I am 62, was finally diagnosed with short-segment Hirschsprung's disease. I have had extreme difficulty with bowel movements all of my life. I remember stories of my mother using a pencil to get it out of me. At about age 28 my family doctor used a laser, as he said, and he cut a slit in my opening, cauterizing the sides, so this would expand for me in use. It has worked since. I still had to strain, often to the point of getting dizzy. I had a prostatectomy last year, and immediately could not get anything out of me, and eventually started using Miralax daily. I finally had an anal myotomy last year, but that only gave relief for a few months. The doctors won't do the laser procedure that worked for me in the past.

Comment from: Angry Hyena, 45-54 (Patient) Published: March 03

I lived with the Hirschsprung's disease all my life. If my mom was not being told that I was faking the pain, she was being told to just give me an enema. Really, is this how educated medical personnel deal with Hirschsprung's! I had some remission periods, however the day after I graduated college, I had the attack of the Hirschsprung's again, and again until it ended up ruining my work career. Two years after college, I finally was diagnosed with short-segment Hirschsprung's and prescribed Senokot, two at night and two in the morning and that did the trick. Amazing that a disease found in 1886 is still so misunderstood today.

woman with abdominal pain
Comment from: Steffarooh, 25-34 Female (Caregiver) Published: January 16

My son is almost 19 months old. He has struggled with constipation since birth. Each pediatrician has said the same thing - more fiber, stool softeners, pediatric enemas. We have switched pediatricians twice and they all say the same thing. My son ended up in the emergency room (2nd time in a year) and the emergency room pediatrician thinks he has Hirschsprung's. Have any of you heard of a child being diagnosed at 18months with this? I must say my son is very underweight. He weighs almost 17lbs. He was fully breast fed for 16 months so the pediatrician always thought that is why he's so small. We have a gastroenterologist appointment next month. I'm worried they've caught this too late.

Comment from: Worriedmommy, 7-12 Female (Caregiver) Published: March 20

My son is 8 years old. My sister is in nursing school and is studying Hirschsprung"s disease (HD). I didn"t know that this may be what was wrong with my son until she told me to google it. My son has had problems from day one. It is now so bad he does not go without and enema. He has gone 2 weeks without going! His doctor tells me to give him an enema since Miralax does not do anything; we also tried laxatives with no result! I know this is not normal, I feel like a bad mother for not knowing something was wrong. I felt deep down something was but his doctor tried to tell me she thought he was holding it in due to him remembering it hurting when he went. Due to our stupid insurance I have not been able to change doctors. I caught her out of town yesterday, called a specialist and got them to call the office and request a referral. We are finally going to see someone that hopefully can help us. I am not sure this is HD. But from what I have read it sure sounds like it. His poor little belly is swollen and sticks out so bad he never eats much and will be 9 in July and is still wearing a size 6 in clothes.

Comment from: 13-18 Male (Caregiver) Published: January 30

My son was born with Hirschsprung's and he was also diagnosed with Down syndrome. We did not know about Hirschsprung's until he was 17 and no one knew what a painful thing it was to live with. He could not express the way he was feeling. He had blood transfusion, around 5 colon exams and hospitalized. It took a pediatrician gastroenterologist to tell us what was going on. He was constipated all his life.

Comment from: bublee, 0-2 Male (Caregiver) Published: July 18

Gradual distension of abdomen. no stool without suppository/draining catheter. these signs symptoms worsen with passage of time.

woman with abdominal pain
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