My Son Has Hirschsprung's

Nicholas was born December 18, 2006, six days early via a planned c-section. He seemed perfect except that he never passed his meconium, and didn't seem to want to eat. That night the nurses took him to the nursery so I could sleep, and overnight it was determined he needed to go to the NICU. The next day I was told they suspected Hirschsprung's, and it was confirmed a few days later by a pediatric surgeon. He was transferred to University of Maryland Medical Center's surgical NICU and underwent a pull-through corrective surgery the day after Christmas, where they took approximately 12cm of his colon and his rectum. He came home on 12/29, and aside from having to dilate his anus with these things that looked like Sharpie markers every diaper change, he had no other issues.

Potty training was very difficult. We were told it probably would be. He didn't stop wearing diapers/pull-ups until he was 4 1/2. Now, he is almost 5 1/2 and while he is fully trained, a new problem has emerged. He now says he doesn't feel it when poop is coming, and ends up soiling his pants. Not full on bowel movements like in a diaper, but he starts to poop in his pants and doesn't even realize it. He often doesn't even smell it; we do and check his pants. It just happened today at school (he is in pre-kindergarten). I am worried about sending him to summer camp this summer, and also to kindergarten in the fall. I am in the process of getting a 504 medical plan written up for him for school, but I'm not sure how to handle summer camp. But more importantly, I'm worried about why all of a sudden he can't feel poop coming out of his butt. My husband read online that it could possibly be caused by constipation. We've noticed the poop that ends up in his pants is hard and dry. My husband read that sometimes, constipation can cause the bowels to stretch out somewhat (also a common symptom with HD) and lessen the feeling of needing to poop; this combined with his lack of rectum (and therefore, unable to hold his poop in like you or me) is making things very messy and stressful for us.

My husband seems to think increasing the water and fiber in his diet will soften his poop and maybe help him feel it, but I'm worried it's a bigger problem. Does anyone else have any experience with this?
MelissaBo MelissaBo
31-35, F
5 Responses May 23, 2012

Melissa, my son struggles with the same trouble. We have tried miralax, fiber, probiotics, potty sits, and physical therapy. He was more like 9 months old when he was diagnosed with HD and had his resection. He is still in pull ups at 5 1/2 years old and about to start kindegarten. His situation sounds very similar to that of your son's.

Hey Melissa.I am a 15yr old with the same story.I used to have the same problem when I was young.You don't have to worry.It will all clear up.I'm doing absolutely fine and aiming to get a 2400 in the sat after my previous attempts.I am absolutely fine,and I'm sure that your son is destined for success.God bless.

Thanks, I, too have a son with HD. He is about to start Kindegarten, and it is great to hear someone say they struggled with this and it all cleared up. God bless you for the hope you gave me today for my son.

o an i forgot to tell you to buy more then one pair of the same pants i bought 7 pair of everything if he had to change at school little girls notice diffrent clothes an he could get teased ., an thats painful an effects their self esteem , i didnt do thar his frist year of school an wish i had thought of it

yes this is very normal its dry cause its been in his pants a while my son did this till 13 till be became socially aware depends on the child , dont worry this is normal my son is 21 now an hes ok , he didnt feel it or smell it an i could from across a room , boys just to busy to bother with it , i wouldt make a big deal of it

It is awesome to hear that it does indeed get better with age. My son is also dealing with this. He is almost 6 and about to start kindegarten.

There is a great dr in Philadelphia that has a lot of experience with HD. His name is Edward Doolin. It may be a worth a call/visit. My son has had and we have a blog about our story at joeycoop.com<br />
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Feel free to reach out, we're here.<br />
Joe