Pooping at night

Hirschsprung's Disease
#1

Hi – my daughter Naomi is 4 yrs old and has SSHD. She is taking 2 squares of ex lax before she goes to sleep. She is in underwear all day and during the day does really well with being able to tell that she needs to poop or pee, etc. She does have streaks at times and it is all a lot worse if her poop is loose. All that being said, she is pooping when she sleeps at night. We have tried giving her the ex lax at dinner time (6 or so ) at bed time (7:30/8:-- or so) at 11pm and even later. It doesn’t matter – she will still poop sometime in the early morning and will not wake up. She also pees at night and when she takes a nap (but doesn’t poop during naps). Changing the ex lax to during the day results in leaky poop all day. We are very happy with the clean-out results and that she is able to be in underwear all day, etc. but the pooping while sleeping is not great. I am looking for suggestions or insights - is she going to start waking up to poop?

thanks so much,

Jessica

1 Like
#2

Jessica,

We too have tried exlax as well as other senna based products and always got simular results as you. I think laxatives to see the result is unpredictable.

I would say based on what you are describing that she is not emptying her colon all the way when she does go potty. Our surgeon and also when I consulted another one via email told me for my son it was pseudo-incontinence. What that means is the person isn’t incontinent but the colon kinda acts like it is. Here is how Dr Shaul from LA childrens described it…think of filling a bucket up with water and not turning the water off…what is gonna happen is the water is gonna spill out. So with the colon if it isn’t completely emptying it spills out without control.

This was when I decided to give the high volume enemas a try, like they do at cinci for bowel management. With the supervision of our surgeon here in CA adding xrays daily and him being in contact with Levitt. And it was a huge success…due to his age being already 5 and enemas being hard on him emotionally that is when we decided to go the cecostomy (which is another place to give an enema instead of the bottom).

The cecostomy and when we did enemas has been the right decision for my son. I deffinately recommend it to other HD families that are having problems with constipation, accidents and psudeo-incontinence.

Janel

#3

Are there any good comforters or sheets that would recommend for when this happens?