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Hirschsprung's - any advice please(5 Posts)
Hi my little boy is nearly 5 months old and was diagnosed with Hirschsprung's Disease following a rectal biopsy at 6 weeks. We have been doing rectal washouts twice daily and were waiting for him to gain weight ready for his pull through operation in September which was planned to be done by keyhole. However our consultant has now left and we have a new consultant who is keen to fit a stoma instead and use a more traditional pocket pull through method, although she has said we can request another surgeon if we wish to.
I wonder if anyone has any experience with Hirschsprung's and if you can provide any guidance based on your experience?
It's obviously worrying having to deal with the operation and I'm worried about which course of action/method if best and then what to expect ongoing.
Our main issue so far has been weight gain. He is extremely small for his age at just over 10lbs and isn't very interested in feeding due to discomfort I presume. The consultant thinks the stoma will help this and get him on track to have the pull through when he is a healthier weight. He is mainly breastfed with one bottle of high cal formula a day.
Any help gratefully accepted! Thanks
Hi Sweetshop my ds is 3.5 yrs and has short segment hirschsprungs, diagnosed late aged 2 years. He's now had the pull through and had a colostomy and then an ileostomy during the process. He had the duhamel pull through and so far is doing well. The stoma really changed things for him and he suddenly thrived in a way he hadn't before.
Have you found some support groups? I belong to the closed Facebook groups Hirschsprungs and Motility Disorders Group which is great, also Champs Appeal. Breakaway Foundation were fantastic when ds had his stoma although less hirschsprungs specific lots of different bowel and bladder disorders and loads of stoma experience. You'll find loads of support in all those places. Feel free to pm me too if you want to chat more.
Hello thanks for the tips I have just joined that group. Reading things on the forums scares me a bit. I wonder how many if any breeze through without many problems and if it's just the bad cases highlighted there. It is great to hear the stoma helped your little boy and that he is doing well now. It's going to be a worrying time. We're also going to have the duhamel pull through I think. It has been confusing being offered one route and then another as I don't know which is best, but from what I have read they all have pros and cons and our new consultant seems confident in her approach. Did you find having the stoma ok?
Which hospital are you under? We're under Brighton. Stoma was fine and my ds had to have it as part of the duhamel pull through as they needed his bowels to be completely clear before they could do the pull through. It was meant to be 2 operations but turned into 3, started in March and completed in September then took till December for bowels to kick start into action by themselves. First op was colostomy formation, second was pull through and meant to have been colostomy closure but he had an ileostomy formed instead due to surgeon realising he had more affected intestine than expected when in surgery. Third and final op was ileostomy closure. He then needed ad hoc washouts till December.
Stoma was fine, a little daunting at first but you'll get a stoma nurse who will come out to you and they probably won't let you leave hospital until you've changed a bag by yourself and feel confident. You get better with practice. Breakaway were great at stoma support too as you can chat to other parents for tips. They also have a closed Facebook group you can join.
I think unfortunately most of the talk in these groups are where parents may be struggling as for example I uses to post quite a lot but now things are ok I don't any more as don't need to. Everyone is different though but don't assume worst case. I've got to know another mnetter who has a hd ds too and he also is doing really well. Happy to answer any more questions, I've been through it so understand how you might be feeling.
My nephew who has just celebrated his 18th birthday was diagnosed with this shortly after his birth - I'm not completely sure what method was used but he definitely had a stoma for a while. For the first couple of years he did still suffer with stomach problems but as he got older they got less and less and whilst even now his stomach is his achilles heel, he is a perfectly normal, healthy 18 year old!
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