Constipation and abdominal distention

Hirschsprung's Disease
#1

Questions about your experiences:

Is he constipated, is he distended? He hardly ever goes on his own. We don’t let him go more than 3 or 4 days without stooling. His little belly gets round but not hard all over just on the right as you look at him. that side is always a little bigger too. He is will get about 5 cm bigger than his “norm”. When he had enterocolits when was 10cm bigger than norm (which is 6 cm bigger than his norm now! and he was 6 mos younger) Are we being paranoid or do we have a problem? He is 7 mos old, breastfed and on 2 solid meals a day.

#2

@xians

I don’t think your paranoid. I thought the same thing and with being pushy with the doctors to do something to help they ran more test after 2 years they finally found she still had a little hirschpsprungs in her she now has a colostomy again and she is better we are hoping to reverse it soon but no more belly extentions and she is acting normal and she has gained weight. last year she was 19 pounds at 3 and she is now 32 pounds at 4 and half she likes to eat.

1 Like
#3

Thanks for responding. I hope that isn’t the case :frowning: but I did put a call
into our surgeon this morning (she’s a wonderful dr, listens to mommies and
returns her own calls). I’m interested to know what she has to say. I
don’t want him to become dependent on stimulation - right now we can just do
a dilation, he is quite comfortable with that and doesn’t cry or anything
although last night I had to do several dilations to stimulate him and then
he did cry a little when he was pushing. He will often pass gas all day
long and have periods of pushing and grunting but rarely stools on his on.
I would say in the last month he has gone on his own 2 or 3 times. BTW any
ideas on what really counts as distended (measurable wise)?

#4

i just went by my feelings and her actions. Paige had several bouts of
entercolitis and that was the result, no stools on her own and I was
constantly stimulating her, She did have a botox injection in the
rectum to relax the muscles and that worked really good for about 6
months, she pooped on her own without stimulations but again after 6
months back to normal, I have another friend who did the botox after
me and her son did not do good until the second injuection and he has
been fine for almost 2 years so every child is different. It can’t
hurt to do the botox and it might give youa break with stimulation and
might be want your son needs to go on his own and stay own his own.
trial and error i’m afraid

Linda

#5

I talked to the dr today. She wants me to take him for an x-ray Wed morning
at the hospital then come over to her office. This is the only time I hate
living in the rural area - its an hour drive. Thanks for your input. She
had mentioned the botox once before just as an info thing. She said she has
found it doesn’t work all that well for long term. Thank you for your
input.

#6

yeah my doctor said the same for the botox he mentioned it but wasn’t
thrilled to do it but after a year of having trouble I just went with
it and it was short term. I do wish you the best , if you think of it
let me know how the Xrays go, I will be in the hospital this thursday
till the July 3rd with Paige but will try and get to email often
Good luck with you
Linda

#7

Bless your heart…I’ll keep you all in my prayers.

#8

Mine is almost 10 months old. His problem w/ stooling started when he was about your son’s age. We’ve been following the doc’s advice to take Miralax every day. We’ve been told that w/ HD, the intestines will just expand bigger and bigger if he doesn’t BM often and that we shoud be serious about avoiding that. I still give him prune and apple juice, but it does not seem to have an immediate result either.
Good luck to you.
mayo

#9

Thanks for your response. I have a question: Did the smell of your son’s
poop change after he started miralax? After we started the miralax and the
cleaning out process Jaden’s poop started to smell very strange, kind of
chemical like, maybe somewhat vinegar like. I really don’t know how to
describe it. It is completely different than any smell I have every
smelled. The color of his pooped changed too to orange. And there is a
whole lot of colored water coming out with just some solid poop. He is
going on his own though which is a first in a long while. He is pooping
several small poops through the day 4 or 5 that as I said have more water
than poop. His belly swelled tonight, so I did a dilation and got a lot of
gas, some poop and a lot of water. Could he be getting bloated? His belly
was a lot better after the dilation. What do you think? Did you experience
any of this?
Susan

#10

hello. It is so strange to read everyone’s messages about constipation and the remedies for it. My son has HD. He is 5 now. He was diagnosed at 3 days old and has had 11 surgeries. He has had a total coloctomy. (17 months old). He is so great now. But what I wanted to ask about was all the juices you guys give your kids. My son’s drs. will NOT let him have anything except milk or sports drinks. He has never had juices. (except once when he was 4 months in the hosp they gave him apple juice and it made him very sick). His drs told me that when you have Hd, you should not have anything else. They said the large intestine is what absorbs your water and if you drink water or juices it wil not absorb like it should and causes constipation. Zach has never been constipated. He has had bouts of pouchitis, caused by his j-pouch, and that required dialiations, but otherwise he is great. I was just curious what everyone else’s drs. thought about the juice thing. Thanks!