Monday was Tylers capsule scope.... Things are really bad. He has a very narrowed section in the middle of the small intestine and ulceration throughout the small bowel. He does not have an obstruction yet, but has pockets of pooh in front of the narrowed section, and ulcered areas, so even though there is a small pathway, stuff is not getting out. He is getting an upper GI tomorrow am to check the transit time.... that will determine if we do surgery and Remicade. We are hoping that we will be able to just do Remicade. I will going back to Boise and be there with Tyler for the next two to three weeks. They are worried about him being able to handle Remicade, and bringing in another imunosuppresent. I am scared! What if the drugs don't work? Nothing has been working so far. I have had three people ask me if he could die. My answer has been "absolutly not", but honestly I am starting to get worried, why are the drugs not working? Has anybody died from CD? Are there people that just don't respond to meds? what happens next?
I am so sorry for being so scatterd. I just want to cry.
Thank you all so much for being there. It is nice to know we are not alone.
My 11 year old son was Dx in may of 2007, but he had symptoms of CD at age 7. He was Dx with spondylitis in July of 2007, but had symptoms at age 2. I also have a 6 year old going through testing...
Currently taking: 2 grams of Pentasa 2x a day, Prevacid 30mg, Prednisone 5 mg, Align (probiotic), and Phenergan prn.