My name is Kristen and I have a 6 year old daughter with short segment HD. She was diagnosed at the age of 3 after 2 years of another dr. saying she had “functional constipation” and she’d grow out of it. We found a WONDERFUL SURGEON who has been a life saver. We had a temporary colostomy and then our pull-through. Shortly after we had a bowel obstruction and then massive abcesses in our abdomen that had us hospitalized for better part of a month!!!
However, Nicole has suffered fecal incontinence ever since her pull-through…instead of going back to a colostomy, we decided to start a “bowel management” program with her to prevent accidents in between treatments… We’d love to talk to other kids and parents about having and coping with HD and all that comes with it!!!
My son is 4 mos old and was diag. with Hirschsprung’s at 5 days old. He recieved his ostomy when he was a week old. He has had 2 surgeries and we are preparing for surgery #3. Crossing our fingers that everything works out well and we can be in the hospital in 2-3 mos. He has been prolapsing for the past 2 mos and is not a happy camper. I have gotten very good at changing his ostomy bag, but we still have the odd accident when we are out. We were just wanting to connect with other parent in the same situation as us. What to expect with the next surgery. That kind of thing. Thanks to everyone out there!
My son was born w/ hirschsprung’s, he is now 16 yrs old and going very well. I am finally going to have another child and wonder/worry if my next child will also have hirschsprung’s. I would like to talk w/ other mothers who have experience with this.
I am 51 years old and just found out that I may have Hirschsprungs disease. I have had constipation problems since I was 4 years old.
Hi! I found the link to your site from the Hirschsprung’s Disease Yahoo Groups site. I have a one year old son with LSHD.
Because I was born with it.
Since Im too afraid to go to a doctor for now, I thought I would go online and ask around and see what I can find out from others with the same problem and hopefully i’ll find some encouraging information here.
I’m 24 years old, I was diagnosed with HD at a few days old and had surgery immediately following, I had a colostomy bag for a time, im not positive how long, maybe a year give or take a few months, and then had the pull through i think its called, and now everythings connected. here’s the problem. first and foremost, I’m trying to figure out as much as i can without having to go to a doctor, thats kind of my last case scenario at the moment, I think they kinda traumatized me as a little kid or something cause even I dont understand just why im so adamant to not go lol…
The other problems are this, For the longest time, almost half the time I would have diareah, sometimes from eating stuff i wasnt supposed to and sometimes for no reason, I would take some pepto bismol and it would go away. Then as I got older the problem began to change and it went from being getting diareah constantly, to being you either have diareah, or your constipated and no happy medium inbetween, It gets quite annoying at times when you have diareah, not so much cause of the fact that its diareah but cause of the fact that you have to continuesly run back and forth to the bathroom, and when you go, its almost nothing, literally minute quantitys of waste, yet a minute before you ran to the bathroom you felt as through you were going to explode, then you make it in there and go and you say “thats it”? i had to go that badly just for that ?
It doesn’t make sense… and then on the other hand there will be days on end when you eat normally and you pretty much dont go to the bathroom at all, and im saying to myself how is it that ive eaten all these subs and food and i havent really gone to the bathroom much at all in days, wheres all this food going, its not just burning off like fuel its got to be going somewhere ???
But it just seems as though in the last few years or so the constipation portion as became more frequent and its either one or the other diarrhea or constipation and the only thing that ive noticed that actually made some progress was if i ate ridiculous amounts of shredded wheat, like literally a whole bag in one day, and i remember the first time i did that, i remember saying to myself “wow thats amazing ive never been able to go like that in my life, i need to eat more of this stuff”
And the other thing thats become more frequen in the last few years was finding blood on the toilet paper, not immense quantities of it, but maybe what it would look like if you popped a zit, and not all the time, it seems to only usually come up when the constipation is occurring so i figured it was probably from straining too hard, or potentially a hemmoroid??
If any of this sounds familiar to anyone or if anyone has any ideas or suggestions feel free to message me.
Thanks,
Justin
my daughter was born with Hirshprungs Disease
My son has Hirschsprungs. He recently had his pull-through, but no longer has a good appetite.
Hi im mum to chris 18mth with TCHD just want to share information and experiences with others. Meet other parents going through the same things as us
my son was born with Hirschsprungs, he is 10 yo and still has problems. He just recently started seeing a specialist again and I’m wondering if this is going to be a problem that he will have to deal with or if there is something we can do to give him some relief
My daughter was diagnosed with hirschsprungs about 12 years ago and I was looking for a support group where she can talk to kids her age that has the same condition and maybe it will help her to deal with some of the things that she is going through.
I have all the symptoms of Hirshsprungs
Granddaughter has hirschsprung’s, she is 6 yo now.
This past year has been a tough one. My son was born with Hirschsprungs. I had never heard of the disease before, so I was dumbfounded. He had a pull thru surgery. He has been in the hospital several times since for infections of some sort. I just want to know how I can keep his digestive system happy.
My name is Jodie Vazquez and my grandson was born with hirschsprungs. He is doing fine now, but it was very scary for us in the beginning.
I am the mom of a 4 1/2 year old boy with Hirschsprung’s. He has had multiple surgeries, doing well now, but I am concerned/interested in toilet training issues and stress issues in his development–as we manage his body.
I would like to read about/connect with others who are impacted by this disease and what they have tried that works.
hi my name is dana and our daughter alinza was born with hirshprungs disease. she was diagnosed at 1 week 3 days and had surgery at 2 weeks 1 day old. very very scary! my concern is that now she is constipated and breathing odly. when i took her to just he local docters office they said she just had a lil conjestion. well they have like 4 docters and we seen 2 but not the 1 we really like and is more caring. we go back to her surgeon more so we will see more than. any suggestions or idea’s- any one else experiance this?
I am an 18 year old female and was diagnosed with at the time the worst case of hirschsprungs disease my doctors at childrens hospital had ever seen i went through several major surgeries that utimatley led to the removal of all my large intestine and 12 inches of my small doctors wernt sure of the long term effects but i know live them and they pretty much controll my life. I was hoping to find information on dealing with these problems anybody?
My daughter had pull thru surgury at 4 months old.