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Crohn's Disease
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Posted 10/6/2010 1:42 AM (GMT 0)
So this is my first posting, my girlfriend wants me to be social somehow. i was diagnosed with crohns late last year and my condition is spiraling downwards fast. im 5'10 and i weigh about 110 pounds. my whole life has been put on hold and recently, the pain has been so bad i cant leave my house, not even for work, i want this to be over
Posted 10/6/2010 2:18 AM (GMT 0)
What medicines are you taking for CD?
Posted 10/6/2010 2:21 AM (GMT 0)
ive taken them all and none seemed to do much. most recently, asacol, prednisone, flagyl, and cypro. now my doctor wants me to start remicade. im very scared
Posted 10/6/2010 4:42 AM (GMT 0)
i was scared to start remicade also- put it off for a long time. i've had 5 infusions with no bad effects...no good ones either though- doesn't seem to be helping me. hope you feel better soon!
Posted 10/6/2010 12:51 PM (GMT 0)
Music man crohns is a very scarey thing and I feel for you, I really do. I think joining this online forum is a great way to try to reach out and hear from others who are also scared and losing weight and struggling with crohns. You are so newly diagnosed that it is an adjustment that will take time... stick in there. I am about to start humera and I am also scared... what if it doesnt work? what about infection? will I ever get back to work? the list goes on. i joined this forum only a few days ago and already i am feeling less alone and more confident that I can do it.

best of luck and way to go for reaching out

B
Posted 10/6/2010 2:15 PM (GMT 0)
I dealt with this disease for more than 30 years without joining a forum or a group. I have found the group talk helped me understand what I was feeling as many in the group had the same concerns. This forum has done the same thing plus it is international. You will hear the same emotions that you experience, same problems such as work, exercise, sex, quackaery etc. You will get a line on how medications are helping or hurting as well as new theory. And of course you can come here for a little sympathy from those of us who REALLY understand EXACTLY what you are going through. You have an amazing girlfriend there pal that sent you this way.
Posted 10/8/2010 2:46 AM (GMT 0)
wow thank you all so much. ya she is amazing. despite my weight loss and lack of energy for anything, she has been right beside me. I really appreciate everything from everybody this forum already makes me feel less alone!
Posted 10/8/2010 2:03 PM (GMT 0)
I would get on the remicade ASAP! I was spiralling out of control 9 years ago and this "new" drug remicade had just come out. It saved my life. Saved me from surgery and from hell. Took it for 6 years and got some semblance of my life back. I know you're scared, but I really believe it's worth a try. Also, have you considered diet modifications? It doesn't work for everyone, but there are a few diets out there that are known to really help people with IBD (SCD and Makers Diet). That might not be an option for you since food is a touchy subject with all of us.

You are not alone. Hang in there! (and get on the remicade!)

Stef
Posted 10/9/2010 1:02 AM (GMT 0)
the only thing rem has done for me is bronchitis, not so much relief, at first but not now.

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