Thanks so much for your reply. DS has total colonic Hirschsprung's extending into his small intestine as well. He had a pull through at 7 months old and in many ways has done brilliantly since then. He takes the maximum daily dose of loperamide and is still supplemented with sodium chloride as well.
The main issue we have is that food is a massive problem for him. We've spent years trying to work out what his food triggers are, and we think now that it's anything artificial, anything with added preservatives, colourings, flavourings etc. All of which give him a massively upset tummy, pain, wind and nausea and also lead to mood swings, anxiety, emotional outbursts, lack of concentration and interest in anything and general lethargy.
When he eats 'cleanly', i.e. foods with simple ingredients all made by us at home he is fantastic - no unpleasant bowel symptoms really, apart from having to go more regularly. No mood swings, happy and reasonable and generally a normal kid of his age.
I've heard (mainly via some of the FB groups, probably the same ones your referenced), of loads of kids with HD being diagnosed with SEN as well - ADHD, ASD, generalised learning and behaviour issues. These parents are also having a really tough time with their child's bowel symptoms as well.
I can't help but feel that given our experience with behaviours and physical symptoms triggered by food that many of these issues could be resolved to an extent with the right diet?
Saying that, I find it physically exhausting having to plan and cook every last thing DS eats, and also heartbreaking when he can't join in with social things - taking his own food to parties etc. It's becoming a massive internal struggle for me as to whether or not I'm doing the right thing.
Does your DC have any food related issues? Why did the surgeons not want to do a pull through?
Hope they're managing well with their ileostomy - DS had one for the first 7 months of his life. DH was brilliant at dealing with it, I was hopeless at cutting the bags etc!