We are back from Boise

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Regular Member

Date Joined Sep 2007
Total Posts : 22
   Posted 10/10/2007 8:52 PM (GMT -7)   
Hi all!
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.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 10/11/2007 4:20 AM (GMT -7)   
Hi If you need a good cry have one and then you will be ready for the days ahead of you .All I can say is the Rem. was not a scarry experience for me I thought it would be. What will happen is you and your DR. will work out a treatment plan and you both will work your way threw this. Ty must need more help then what he is getting .Hoping this combo will be the thing that brings him around. Keep your strength that you have showed going it will carry you both threw the days ahead. I will pray he does good in his test. You can get threw this .Get a good rest and we are here for you all. Just keep thinking positive for now things will work out. lots of love gail
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