Anyone with any experience of hirschsprungs disease !!

8 replies

stressedmum2 · 21/10/2008 15:02

Hi I have a 9 month old DS who was diagnosed with hirschsprungs when he was born after having a bowel obstuction.

He had pull through op when he was 6 weeks but would be pleased to hear from anyone who knows how this affects children as they get older as Consultant doesn't really say much. Had also never heard of this before he was diagnosed with it.

OP posts:

bubblagirl · 21/10/2008 17:58

i have no advise but bumping for you hopefully someone can help x

feelingbitbetter · 21/10/2008 18:06

I have heard it very recently on here, someone asking for potty training advice after hirschsprungs.
Are you new to the site stressedmum?
Use the search for messages tool at the top of the page. I just did trying to find that potty training thread and LOADS of stuff came up.

abbyindia · 07/11/2008 09:46

I have 2 children with Hirschprungs. They are now 10 and 7. The 10 year old is short segment. The 7 year old is a long segment. They did not have any problems other than the Hirschprung's, like DS. If you have any specific questions I could answer I would be happy to answer them. Just to let you know about them in general, they both attend regular school with no bowel incontience problems. My short segment child is normal size. My long segment child is small for her age but being a girl it just makes her cute. As far as potty training goes the younger of the two was easy. Her stool bothered her bottom so bad that when I told her if it went into the toliet her bottom would feel better and two days later she never wore another diaper. She has amazed me with her bowel control because with her long segment she lost her entire large intestine. I had considered just leaving the iliostomy but in the end decided to ahead with the pull through surgery. I am glad I did because she now can do thing just like her peers. I would love to answer anyone's questions.

Thompsli · 05/12/2008 20:02

hi i have a 3 yr old with hirschsprungs who had the pull through op at 6 wks removing approx 10 cm of bowel. Currently trying to potty train and having big issues with amount of bowel movements per day and the fact that he doesn't seem to know when he needs to go - no issues with weeing, just lots of poos!! what age did your children have control over their bowels? and what did you do to encourage them?

Shhhh · 07/01/2009 22:50

only just come accross this so bumping for others who need advice etc.

ds is 23 months and was diagnosed at 5 weeks with HD. He has short stem and had the pull through op. This resulted in a stoma being fitted due to infection. Has had numerous episodes in/out of hospital (last one being Nov 08). He is over the last lot of illness and thriving.
Still struggling with food.think he may have an intollerance to milk, orange/apple juice and maybe chocolate.

Im willing to speak to anyone that needs advice x

Shhhh · 07/01/2009 22:50

only just come accross this so bumping for others who need advice etc.

Im willing to speak to anyone that needs advice x

momof4boys · 14/01/2009 17:06

Wow it is so nice to relate to others with this. My 3 1/2 year old son had a pull through at 3 weeks old. (17 cm removed). He did not have a colostomy and has always had several BM throughout the day. Constipation has never been a problem, quite the opposite. We visit the GI specialist 2x per year and they test his sphincter muscle and say that he is doing very well. However, he does not seem to know when his bowels are coming until they are already in his diaper. Has anyone been able to successfully pottytrain a child with this condition? Any tips are much appreciated. He is very mature and intelligent for his age and he will be 4 in May. I am very patient, but feel bad that he is embarassed by this.
Thank you.

bszczepura · 31/01/2010 22:58

My son is 18 months old, and was diagnosed with HD at 2 weeks old. He had his pull through at 4 months old, and had 30cm removed.
He has had alot of problems since his op. He didn't poo properly for along time, and I was still having to do 2 washouts a day until he was 1yr. I am now doing them as and when he needs them. He has been admitted to hospital several times with enterocolitis.
His surgen thinks that his spincter nuscle isn't relaxing, so he may need more surgery in the future, but at them moment we are 'waiting to see' what happens.
He also suffers from severe nappy rash, and he is often in pain with his tummy, especially when he eats.
Hi surgen says that all these problems will improve in time - as he gets older and stroger. I haven't 'met' anyone on the internet with similar problems post surgery, although his surgen says that she has seen these problems before.
He is a dear happy little soul, and very cheeky!
Here is a good site to look at:
www.hirschsprungs.info/

Flip