Hi,
We live in London and my daughter was diagnosed with Total Colonic HD when she was 2 weeks old. She had her ileostomy when she was 2 months as initial rectal washouts didnt work for her.
She was doing well with the stoma. She had her pull through procedure done 3 weeks back(she is 18 months now). She is recovering slowly. But she is suffering from severe nappy rash and very poor appetite. We are using Ilex to treat her nappy rash which is helping a lot. But the very concerning thing is that she is not eating anything at all !!..she is going down in her weight and we are trying nearly 15 varities of food and but still she is not interested in anything.She is just chewing the food and spitting it out.
Has anyone faced similar issues after the pull through procedure? Plz plz share any tips. We are thinking in all possible ways to know why my daughter is not eating at all : is she not hungry? or is there something blocking in her small intestine or is there something painful in her throat…or is this a side effect of epidural given during her surgery, no idea 
I just called the peadriatic department to leave a message…but i dont think they will look at our issue soon…any tps and suggestions are welcome…Thank you.
My prayers for all the kids out there suffering from HD.
Thanks,
Chamah