Hirschsprung's Disease Member Introductions

Hi my name is Vicky,
To start with my son who is 13 weeks old has hd and was diagnosed with it at 2 days old and had an operation at 11 days old,i want to learn more about the side affects and the long term conditions he may incounter and any other info that people are willing to pass on to 2 worried parents at this early stage.
Thanks very much Vicky xxx

My son (age 2) has TCHD.

My name is Crystal 20yrs old, my husbands name is Michael 24yrs old, and we have a wonderful son named Brodie who is 1 month old. Brodie was diagnosed at 3 weeks old with Hirschsprung’s Disease. He is now a little over 1 month old, and has had no surgeries yet. He is scheduled for his pull at 3 months old. I would like to join this group for support, and to learn more about the disease and how to mange it.
Thanks
Crystal

just joined.My grandson had a pull through in the summer and is doing well.He now has some solids but poohs all the time.Has anyone experience on which foods to avoid etc.

welcome to the group! Just wondered how old your grandson is and how much of his colon was HD. I know it seems far fetched but my son is 5 and had total HD. He eats anything he wants, poohs twice a day and is very happy and healthy. The only thing we do that is far fetched to some is that he only drinks milk and sports drinks. Everything else he drinks makes him have the runs. His GI dr is huge on this. The large intestine is what absorbs our water, so with no large intestine it goes straight through him. I realize its a big step, but my son has no problem with it. He totally understands. Hope it is helpful and I am sure your grandson will be “perfect” in no time at all!

Good luck and God bless,
Chrystal

Hi there,
My son is 17 months old - he too has SSHD. He had approx. 6cm of lrg bowel removed when he was 3 months old. He still goes a lot throughout the day but has made some progress. He is otherwise very healthy. We battle a severe diaper rash on and off because of his frequent stools, it gets especially bad when he is teething. We find the best products is stomahesive powder and ILEX paste, it has done wonders.

He is starting daycare next week so I am anxious about that - I’m hoping they’ll be able to cope with his frequent stools and fussiness with having his diaper changed. I also find him to be timid and nervous with new people etc. - probably as a result of everything he has been through. Any one find their kids like this? Any one have advice on how their kids adjusted to daycare?

As for diet I try and keep him on a lot of milk, bananas, cheese and carbs (pasta, bread, rice). I don’t give him a lot of fruit or gasy vegetables (corn, peas, beans, brocolli etc.).

take care - you seem like a great support to your daughter.

Hi I am from Australia and gave birth to my first child, a son named Ryley on 3 October 2006. After 18 hours, he started vomitting bile and still hadn’t passed the mecomium plug. They sent him for an xray and found that he had a blockage in his bowel. HD was suspected immediately, so he was transported to a bigger hospital. At Day 3, his bowel perforated and he had to have emergency surgery to form an ileostomy. It was also discovered that he had HD. He was a low birthweight baby and failed to thrive. He had many bouts of enterocolitis but eventually turned the corner in January last year, and started gaining weight so he could have his pull through op. Although the initial biopsy showed he had SSHD, it was found to be incorrect. The second suspicion was TCHD, but following a second biopsy, it was found he had LSHD. He had 30cm of his large bowel removed in February last year and had his stoma closed in March. He is now going very well, and you wouldn’t know he was ever so very, very ill. He occasionally has problems with excoriation of his bottom, and poos 2-3 times a day, but other than that, he is fine.

I am new to Hirschsprungs. Unfortunately my story is different. My poor son went years and years with pain,ab destention and chronic constipation. Many doctors ignored me and said things were ok. Finally at age 4.5 yrs our GI did some testing which was negative then he started to get so sick we ended up in the ER and a surgeon was called. Low and behold he has Hirschsprungs. He just had surgery on 1/24/07 and had about 25% of his colon removed. Because things were so swollen we weren’t able to do the pull through. So another surgery for another day. I live in Northern California and I am looking for support and guidence.

Janel

Hi there, My son has TCHD- he is almost 3 yrs now- he had his pull thru at 6
months- he is doing GREAT- 37 lbs and very happy/healthy. It isnot an easy
road but try and have faith that your son will be ok- it is so hard dealing
with a sick child. Ask me any questions- my email is a.dowling@verizon.net I
am happy to help!

Amy

My daughter was diagnosed with SSHD at 2 days old and has gone through the usual process we are all familiar with. Since her pull-though at 5 months old we have had a host of issues. The most daunting issue at hand is her consistent soiling. She is now 7 years old and still struggles with this despite a clean bill of health. There are many social situations that hurt her greatly because of this.

I joined this group to hopefully connect with other parents in the Louisville, KY area who have children her age as well as children across the globe so that she can connect with children who are going through the same things that she is. My daughter is very intelligent, and understands her disease fully. She wants to, one day, become a doctor so that she can find a better cure for kids who live with this and it’s social implications.

Lisa, I understand your frusteration about not getting diagnosed until now. It is so scary to think about our little ones going into surgery. I remember being terrified of the colostomy and irrigations, but as a Mom you just do what you have to do. Once you get the hang of it, it gets easier. I know for me, about the time I was used to the bag and got the hang of getting it to stick and stay on for a few days, it was time to reverse it. I will keep you and your family in my prayers.

I just wanted to re-introduce myself to the group since a lot has changed since my original post. My name is MIchelle and I now have 2 children with hd. My boys are 2yrs and 9 months old. I also have a daughter that is 4 and has no health issues.

My name is Jo- I’m a mother of a 3 month old HD baby named Chase. He had one stage pull through surgery at 3.5 weeks. I am hoping to learn from parents who have HD kids and how they cope. I am especially interested in quality of life when managing HD in older kids/adults.

Hi everyone. My name is Kimberly and I am the proud mommy of 2 wonderful boys. Jason is 4yrs old and Jacob was just born, May 12, 2008. Soon after Jacob’s birth, he was diagnosed with a severe case of Hirschsprung’s Disease. I have joined this website in hopes to share what is going on in our lives and get some tips / support on this disease. I would love to connect with people / families with this same disease.

hi kimberly,

My name is glenda, i’m from ireland, i have a 6and half month old boy, Joshua. he has had an ilestomy from 6 days old, and still does. It took a lot of getting used to, mastering the bag is an art i am still practicing. The op for pull thru is not happening until a year, so it not like over there with you guys, so i mite have by then mastered the bag by then.

Hope things go well for you

You’re welcome. If you want to see what it is like at least for a 4 year old I have two videos posted on youtube. I also have a picture if you want to email me off list I can give you that info. That way you know what it looks like beforehand and are not scared.

Janel

Hi im a proud mother of 2 boys Shane who is 3 and Karson who was born May 1. When Karson was 2 days old they took him to a Childrens Hospital in our area and spent 3 weeks in the NICU. Had a rectal biopsy and was diagnosed with HD. He had his first surgery on May 12 when they noticed he had a pref in his colon, so they gave him a colostmy and let it heal. June 9 he had his 2 nd surgery which was the pull through. And the Aug 12 he had his 3rd to close his ostmy. And he is doing great!! I just wanted to talk to other moms who have gone through this

Hi, I have a 12 yr. old with HD. He was dx at 2 days old, over 1/2 of large intestines removed,colostomy same day, pullthrough 11 months, chronic constipation, cecostomy 12 yrs.

He has been battling with sever gastritis for the last 2 months, and currently has a feeding tube because of it.

Shannon

  • US= Ultra short segment
  • SS= Short Segment
  • Then there is Long Segment and Total colonic

These are different areas of which HD is affected the child. Basically tells you how much of the colon had no cells.

Janel

hi there. i just got this email due to having another email address. .our son is 19 months old and was born with total colonic hd. he has had over ten surgeries already including a failed transplant. we almost lost him last april due to an entanglement of intestines creating an abcess causing five infections that were not survivable. i am so sorry for your loss. we were right there a year ago. in fact we had put a dnr on him because of how much he had been through and because they said there was nothing more they could do for him. they were giving him every antibiotic they could think of and had him on an oscilator so he wasnt even breathing on his own. his organs were slowly shutting down and somehow something happened and he made it through it. after he was born in july of 2007 the doctors told us to go ahead and have more kids that it wasnt likely that they would have it too. we found out we were pregnant again that december of 2007 and we had another
boy in june of 2008. we was born perfectly. he didnt have hd at all and i have to say i thank god for it. i dont know if i could;ve gone through another child having it. i have been looking for someone like you, although i wish you hadnt lost your child. everything we have been through i dont think other hd parents can understand. i have seen a lot of people talk about their experiences but i havent seen anyones as bad as ours until i saw your email. if you ever need to vent or talk to anyone i will be here to listen. i wish i had someone last year when we were going through everything. do you mind me asking how he died from it and how bad his was and how old he was?
sincerely,

jackie