Hirschprungs disease

[chel27]

My son was diagnosed with this at 2 days old it has been a rough old ride and he has been in hospital for most of his little life (hes 4 months old) I was just wondering if anyone elses baby on here has this?

 

[chel27]

I see im alone on this subject...oh well was worth a try lol

 

[Lottie86]

Just wanted to send a hug What exactly is Hirschprungs disease (if you don't mind me asking)

 

[chel27]

thank you for taking the time to reply

Hirschprungs disease is where the ganglion cells of the bowel are not present therefore the dead cells have to be cut and stretched so the normal part of bowel with cells can work to push the poo out.
In my sons case he currently has a stoma (colostomy bag) as he had a operation to remove the absent cells so he could poo normally but this operation didnt work for him so he had to have another operation hence why he has a colosotmy bag.
only 1 in 5000 people get this and i had never heard of it till he got it.
just wanted to see if anyone else was going through this.

 

[jojo2605]

Hi hun. My son doesn't have Hirschsprungs disease, but when he was diagnosed with 'dilations' of the bowel prenatally, this was one of the conditions that I knew could be present. It turns out he had a different issue which was Imperforate Anus, this too occurs in 1 in 5000 births.

My son had a colostomy from the day he was born and finally had it reversed 2 weeks ago! We don't know currently whether he'll actually be able to control his bowels, we're just enjoying the fact that he can poo out of his bottom, as he wasn't born with one!! Time will tell.

I know it's not the same but if you want to talk to someone who is constnatly having to deal with poo all the time, etc, just give me a shout hun!!!!

xxxx

 

[Aidan's Mummy]

Hi hun. I am a student nurse and some of teh children I see in the community have this disease. Do you have a community nursing team in contact with you?

Usually they can fix it hun but sometimes (very rarely) that isn't possible

Usually the baby will have their bowels washed out every 3 days. Is there any reason why they haev put a colostomy in so soon? Did they give you the option of teh bowels being washed out (it's not as bad as it sounds and probably more comfortable than a bag as it involves no surgery)

If you ever need some help or some one to talk to hun, Pm me
xx

 

[Lottie86]

Thanks for explaining Chel. We have bowel issues here too although F doesn't have a colostomy he is just on big doses of 2 types of laxatives plus suppositories as his bowels don't move stuff through otherwise and even with the meds it's hit or miss whether he will explode everywhere or still not go at all. Totally different I know but it seems there are a few of us dealing with yucky poo issues

 

[lauren10]

Hi there...I'm glad I found this thread, my daughter was born with an imperforate anus also. She didn't need a colostomy since she's female (and they are less likely to need one) and she had a fistula where the stool was coming out. She had surgery at 4 days old to repair the abnormality, and things are going well with dilation. We too will have to wait and see if she has continence around the time she potty trains. hirschprungs sounds a little bit similar?

 

[luca123]

Hello
Sorry I know this is an old post but didn't want to read and run.
Hugs to you - I hope you are coping OK.
My husband had hirschprungs as a child - he is so fit and healthy now and it has never affected his adult life in any way. xxx

 

[chel27]

thank you to all of you who replied lauren10 it does sound like we go through similar things. life is one big poo mess lol
my son jack also has a fistula which constantly leaks mucus and its just above his stoma. we dont know any different now its what we are use to.

he has his 5th operation coming up on 9th march which is like another pull through operation but he will still be keeping the stoma for now.

I understand everything there is to know about it now, its just nice to talk to people who know what im going on about lol

hope your all well xx

 

[chel27]

my poor baby is in hospital because of a tummy bug hirshprungs disease has alot to answer for he has been in there for week now.
My daughter also has the tummy bug so i am at home with her whilst my partner stays with jack.
grrrrrrr sorry just ranting xx

 

[BonnieK]

My , Grandson was dx with Hirschprungs, when he was a few hours old, his whole colon was effected, at first he had the surgery and had a colostomy, He had that until he was about 8 months old, The only real problems we had at that time was keeping the bag on. But at 8 months old they decided to do the pull through and the night mares began. And because you stated you knew all about this dx now, thought you might be a good resourse for us. Timmy is now 2 1/2 yrs old, The GI doctor we got after the surgery just was not open to answering our questions, his peditrician tells us she knows very little about this and referrs us back to the GI, We have recently changed GI's and hopefully this one will work better for our baby. He has done a decompression for his distended stomach. the very first thing anyone sees him asks why his stomach is so distended. but the decompression only lasted a couple of days. He has recieved 2 botox injections which has had very little effect. But when most people talk about this, they talk about the battle with constipation, we do not ever have that problem, Timmy has constant liquid stools I worry about nutritional issues??????

 

[lauren10]

Hi Bonnie, I'm not as familiar with Hirschprungs as the others are, but my daughter was born with IA and had the pull through surgery. What country do you live in? There is a children's hospital in Cincinnati, Ohio in the US that is the top place (or one of) for children with disorders like this. Even if you can't make it there, Timmy's doctors could consult with them.

Liquid stools can be very misleading. It may actually be a sign of constipation. What happens is, the harder stool is not moved through, but watery stools are draining around it. Doctors can mistake this as diarrhea. It's really important that you see a specialist that knows this diagnosis and how to manage these symptoms. If you don't live in the US, I have a contact you can call at that hospital in Cinn.

Here is an info page and a link at the bottom to contact the Colorectal Center.
https://www.cincinnatichildrens.org/health/info/surgery/hirschsprung.htm

Hi Bonnie, also, has he been x-rayed for a bowel obstruction? That could be very serious and would cause the distended abdomen. Just make sure they checked!

 

[YoungMummy18]

Would like to bump this thread and see if anyone can give me some advice as my 6 month old baby girl has this horrid disease???

xx

 

[rhloveselmo]

Hiya my son's gastrointestinal paed has booked my ill one (nearly 5) in for a biopsy next Tuesday to see if he has hirschprung disease. He is constantly in hospital having clean outs that take no less than a week each time. He looks like a little Ethiopian (no offense), constantly has poo in his nappy, won't eat, no weight gain in over a year and constant tummy pain poor little mite...hoping to get answers next week...
Hugs to your ill one xxx