Hirschsprung's disease/Intestinal neuronal dysplasia

[DanceInTheDark]

DS2 been referred to a surgeon as they think he has this (well HIrschsprung's but they are v similar)

Think its also called meggacolon? Have they suggested operating to remove the bits that have poor neural stimulation. Sorry dont know much about this condition, so will shut up now. Is there a Hirschprungs association/support group?

My little girl doesn't have hirschprungs but does have colonic dymotility and has a colostomy, what did you want to know?? x

We aren't far enough ahead to know 100% - the referral for surgeon is for him/her to assess and then do a biopsy. The Paed we are currently under for what feels like a multitude of other things is pretty sure that his bowel issues are Hirschsprung's.

I didn't realise i hadn't finished my post sorry!

I think i just want to know - for now - what the official diagnosis will involve for him. The physical part of it i mean.

And i think i needed to know that someone might finally understand the living hell that it is and that it's not 'just' encopresis or constipation!

Hi i think the gold standard for diagnosing hirschprungs is rectal biopsy ... we have been through this twice and it wasn't that bad. I completely understand how you want someone to understand how awfull this can be, my little girl is 8 and we spent a very long time trying to get someone to see that this wasn't just constipation !!!! In fact we are still struggling although at least now she is looked after by a great consultant and stoma nurse..

What does a rectal biopsy involve? I know i will get chance to talk this thru with the surgeon but i am on a fact gathering quest