Hi Bac 52
I am also a mom with a 26 year old son who has suffered incredibly over the past 2 years with peri-anal fistulas and abcesses. Unfortunatly he has had a large portion of his b-tt sliced away because of the recurrance of fistulae. He was only diagnosed with Crohns after all these surgical procedures (and 2 years later) and is now taking 100mg Imuran (i think 3 times daily) with Flagyl and Cipro. He ended up having a "temporary" colostomy in October 2006, which was supposed to be reversed, but due to ongoing infections cannot and may not be done. He often says that the colostomy is the easiest part to deal with. The pain and inconveniece of the fistulas is horrible. He lost so much weight is about 1,76m tall and weighs 66 kg. Because of the pain he sits lop-sided on one leg and this is now starting to show in his posture. Thank the Lord he has an absolutely wonderful attitude to life and just takes each knock as it comes. Just like your son it has not affected his colon or intestines at all, but the minute he starts feeling better it seems to flare up again.
He is awaiting authorisation from the Medical Aid (South African type) to start on Remicade (Revellex) but so far they have declined, and the cost is, as I am sure you know, extremely high. God willing we will make a plan for him to start this medication if its going to help him.
I just really want to encourage you that as a Mom, I feel your pain and know that it is so difficult to watch a child suffer like this. We cannot understand why people so young have to be subject to this horrible disease. I just try every day to encourage him and uplift him when he feels down. Apart from prayer there is not much else we can do.
This forum has given me incredible encouragement, because when our son got sick, we honestly had never heard of or experienced anything like he had. At one point I thought he was the only person on earth with this condition, but it is encouraging (in a sad sort of way) to know that there are many others out there also. It is when I read their story or thread and see that they do still have courage, a sense of humour, laughter (at themselves) and most of all hope for the future that I am encouraged. Please stay strong for your son. Love and kind thoughts .... Anniegetyourgun