Hello,
Sorry I missed this post :( I'm another mum whose son has been diagnosed (last Nov aged 16) Although he had it for a few years prior to diagnosis :(
You must be feeling quite gutted about this possible diagnosis, relieved(at a diagnosis) but gutted!!
My son too had the pain and constipation and due to the inflammation internally so little was getting through his system(all backed up) that despite being hungry he could never eat more than a mouthful or two.
If he is inflammed the chances are that he will not put on too much weight, once they have that under control you have half a chance.
A lot of children are given enteral nutrition to help(liquid feeds that contain calories and nutrients the body needs in a partially digested form) Some children manage to drink them quite happily but others may need a nasal tube that runs down into the stomach. In some cases it is given as an alternative to drugs but sometimes the drugs are needed too (as in my son's case) Once my sons inflammation was tackled he gained approx 22 lb which was great
If like me, you will be reading all that you can find-treatments,drugs, theories on what causes it, outlook etc but try and take one day at a time, too much info at any one time doesn't do you any favours. Little by little :)
It may be a bit of a journey but with a great medical team behind you, a little knowledge and lots of questions(never be afraid to ask questions of them) your son's condition should improve. More than likely there wil be ups and downs along the way until they hit on what is right for him (seems to be different for everyone) but it will get there!!