Potty Training with Hirschsprung's Disease

Updated on September 20, 2011
M.L. asks from Flower Mound, TX
8 answers

Hi! My four year old son was born with Hirschsprung's disease which required two surgeries in the first 4 months of his life. For those of you that have not heard of this - it is a lack of nerve endings in the lower portion of the colon that causes an obstruction. Surgery is typically required to remove the defective portion of the colon.

In my little one's case he came through the surgeries with a clean bill of health and over time we forgot all about the disease! Then came potty training....the pee pee side of the training went well, but the poop side is still a challenge. His pediatric gastro doc tells us that due to the disease he does not have the same urges as we do and the poop comes out when it is ready. He also states that at four he has not learned to control the muscles that will allow him to hold it and he will most likely be five or six before he learns how to do that.

At four and defintely at five we are worried that he will be teased for still wearing a pull up - and I have seen adults take a second look at that pull up and can only imagine what they are thinking!

So my question is - has anyone else been through this and can you offer me any helpful hints for training and coping? I look forward to talking to others that have been through this - Thank You!!

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So What Happened?

Thank you all so much! I received several great ideas that I can not wait to try. Also the encouragement each person provided was very helpful!

More Answers



answers from Grand Rapids on

I don't have any answers. I am just so frustrated daily. So, it will take a lot longer for his muscle control to be able to hold it. I get that. But what do we do in the mean time? go to the ptty every hour? ignore that fact that there is some stool in his pants almost every half hour? the specialists say it is just going to take time and I can do that if someone just tells me what to do in the mean time. PLEASE HELP!



answers from Norfolk on

My son is 5 getting ready to turn 6 in Dec. he is not potty trained either. The pee pee side of it is slowly coming along but the other is not there yet. Is it frustrating sometimes yes, but we can't push it. He also has Down Syndrome so his muscle tone is very low If you try to explain this to another parent or even my sons school they don't get it and they don't really care, so work with him and keep trying, HE will get it as I know My son will. As far as what other people think, they are really stupid and don't know any better, which is really sad for them not you.



answers from Dallas on

Hi M.....I feel your pain. I have a little boy who will be 4 in July who was also born with Hirschsprung's. He too had surgery after birth and had a colostomy bag for the first six months, when he had his pull through surgery. He now suffers with chronic constipation that actually causes him to have an avg of 5-6 soft stools a day. To compound our struggles he has Down Syndrome and has a recurrent prolapsed rectum. His physician said as he gets older his pelvic should begin to tilt more which should prevent the colon from prolapsing. We started potty training last year and he actually went a few times on the potty but the colon kept prolapsing after sitting there for a few minutes. We were also told by his GI doc (Hermann) that he should outgrow these issues-we keep praying. One option that Dr. Herman mentioned for kiddos who were still having issues into their school aged years was a procedure (I believe he developed) where he would create a small hole into the childs abdomen where it would allow the parent to flush the colon every morning so the child would not have bowel movements until late in the day. Once they are able to control it more than they would close the hole. Sounds like a pretty simple procedure (considering what they went through after birth). I do know the child must still have their appendix (mine doesn't,unfortunately)in order for the procedure to work. We have talked extensively with Dr. Hermann ###-###-####)about this, as it appears to be the only solution as of yet. I would love to know how your son is doing and if there are any solutions that have seemed to work for him. We have not been able to find anyone else who is struggling with these same issues. Good luck!!

Please call me or e-mail if you have any question ###-###-####,____@____.com.



answers from Dallas on

Unfortunately, I have not had experience with this. But, I was thinking about your son being teased. Could you put underware on over the pull-up? I realize this might not really work. But, I also think that kids get teased for everything. I know a friend that had to buy a new backpack for her daughter b/c she was teased at school that hers was small. I think I might approach this issue as one to help him understand that it is ok to be a little different from everyone else. Kids tease, and I am sure there are some books on how to handle this. Good luck!



answers from Dallas on

I can completely relate! My son is now 5 ½ and was born with HD. He had surgery at 10 days old. Other than about 5-8 icky diapers a day we thought things were normal. Then just two months before his third birthday I was told by his Montessori that I would start potty training for my son. Well through many tears he was potty trained “enough” to move up to the next class. Our previous teachers had really helped me, but his new teacher was less than understanding. He was having streaking and would smell. I thought I would go of my mind. We visited a GI specialist and even went back to our surgeon. We were told everything was fine, he was just allergic to dairy protein. Removing the dairy helped somewhat, but over all he still had streaking and loose stools. Even my mother-in-law commented on his lack of control….I thought I would disown her forever. Once again came more tears.

Ok so here is what we did…We removed the dairy and tried to stay to a healthy diet (low sugar, low fat, high fiber). I have IBS, so I know what foods digest easier and we did those items.

Next we did planned BM’s. Every morning and every night he sits on the potty. We use to read books, because we would sometimes sit there for 45 minutes. For a good BM we would cheer and give a small prize. We use the kids wet wipes since he has loose stools. I also feel his tummy, if it’s distended he must go to the potty.

Now at 5 ½ he goes potty each night on his own and sometimes in the morning. Food is still a big trigger, so he must stay on a healthy diet. I allow him dairy (pizza or ice cream) but only on a limited basis. His stools are still loose and smelly, so we tend to buy a lot of toilet cleaner.

We have suffered through other upsets, but overall he knows no different and feels normal.

For other ideas or support feel free to email me. When I was going though a similar situation I emailed a lady in New Mexico, I just needed some support since his school and my MIL were awful!!!! By the way, we left the school, but still have the MIL. :)




answers from Dallas on

Maybe it would be helpful to talk with a counselor ... such as the school counselor where you son will go to school next year. Sometimes kids are more sympathetic when they know that someone is different because they are "sick". Perhaps she can arm your son with something to say that would make sense to other kids, in case they say anything.

Good luck with potty training and social pressures!!!



answers from Milwaukee on

My son just truned four years old and was born with Hirschsprung's Disease. It is very hard because he is not potty trained and will be starting school next year. We called the surgon that worked with him and he had us work with a potty training teacher right at the clinic. But we have not yet seen and changes. This is a have hard thing to deal with.



answers from Dallas on

My son was also born with Hirschsprung's disease. He is 32 years old and getting married in June. I had completely forgotten the potty problems until I read your email. I don't think there is anything you can do about the training until he has the muscle control. Once he does, things will happen very quickly because he is older and will understand what is going on. The control should start by the time he is in kindergarten so that will help with the teasing. While he is still in pull ups, try to minimize their appearance. And if someone looks at him funny, just tell them that he has a medical condition. Sometimes if you can act like it's not a big deal others will follow along.
Good luck to you.

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