Posted 6/14/2015 11:56 PM (GMT -7)
My son was eventually diagnosed with CD April 2014 after suffering 10 years of bouts of agonising pain, vomiting, and crippling depression. He then had a breakdown which I now believe was a direct result of the effects of the CD. I am very angry that in all this time no-one ever looked at his small bowel or suspected in was CD which meant that by the time he was diagnosed he was admitted as an emergency with septacemia in a very bad way. His was a little unusual as it was not near the Ileum but right in the middle part of the small bowel. After a few months he had the worst affected area removed in a very long and tricky operation but did not have to have a colostomy. Since then he has been readmitted twice very seriously ill and septic and several more times to get the pain under control. Since the beginning of April he has been in and out of hospital as he has narrowing of the bowel and has vomited every day and cannot barely eat at all as what he eats and drinks either cannot get through or cannot be absorbed. He is currently in hospital due to his severe weight loss and is being fed through an NG tube. He has been on several different treatments but was put on to a new one 3 weeks ago that works in a different way and is very expensive but has not responded as hoped. He needs an operation but the doctors said several months ago that they don't want to operate unless it's an emergency? as it could cause more problems than it solves, but he now needs one but is too weak to have it in his current state.
As a mum I'm struggling, he's so uncomplaining through all this but inside I'm terrified and I'm grieving because I fear he will never now have a life that is full and happy. I'm trying to be positive. Any advice you can give me about how I can help him, especially with the emotional side of things would be great. I admire you all having to cope with this devastating illness and I suppose I'm looking for reassurance that although he'll always have CD, will he ever have times when he is pain free and be able to enjoy his life. It's also very hard as he had cancer as a child and I feel he has suffered enough. I only wish I was as brave as him.