Question Dear Odette,
A dear 33-year old female friend who is employed by my husband has fought the Crohn's battle since she was seven years old. She was diagnosed at 19 and underwent surgery to remove a lot of her small intestine and colon after her failure to respond to any of the medications then available. Five years ago she had surgery again, removing a lot of her remaining small intestine and reconstructing her iliostomy site. She's a home TPN patient and has to "hook up" for nutrition 8-12 hours each night. She eats during the day, but not much gets absorbed. Her doctor says she can't have any more surgery and her Crohn's is currently actively progressing. I'm so concerned that she may not survive much longer. She's had Remicade before and is going to start those treatments again. Tell me what you know about this drug. She said there are a couple of other new drugs out now that work marvelously, but they destroy the immune system and because she's a TPN patient it's too dangerous for her to take them -- she's very susceptible to blood infections because of the line going into her heart. Any encouragement is welcomed. She just said, "I'm so scared -- I don't know what's going to happen now. Before, surgery was always an option, but not now." Thanks for being willing to share. Debbie P.S. A lot of her co-workers don't understand this condition and are unsympathetic, but my husband understands and he runs the company, so she's safe there.
Answer Hi Debbie,
I would like to thank you for caring so much about her and your husband for understanding. It is a pity that a lot of people just do not understand Crohn's and take it out on the person who has it. She needs all the support she can get. It is wonderful that she does not have to worry about losing her job. I can promise you this, if it was not for her having a place to go to work each and every day that she is able to do so, it would decrease her life. She has a reason to get up and a reason to continue. Both you and your husband are wonderful people and have earned your angel wings...I thank you so much for caring about her.
I worry about them cutting on her. My surgeon refuses to do it unless I can't take the pain or if it is life threatening. You see, Crohn's Disease is a chronic disease. Once they cut, it goes for the good tissue and starts to "eat" them. I refuse to have more surgery as I would also be a TPN'er.
No for your question. Remicade, in itself is dangerous. It can crystalize the organs and also you have a higher risk of Cancer with this medication. It is worth the risk however because it does help to "build a barrier" between the CD and the intestines. Is your friend on Imuran? If the remicade is given with out an auto-imune medication, the life span of the Remicade is shortened. I am taking the Imuran (and yes, my immune sys is dead) but this is better than having the immune system. It is the immune system that has gone out of whack. It thinks that our intestines belong to someone else and it attacks them. Why does she have a line going into her heart? There are new medications out there that may help, but not to rush into those meds until they find out what the side effects are. You are looking for encouragement, and I just don't seem to be giving you any...I am so sorry. Please tell her that the Crohn's-Colitis foundation is working very hard on getting us help. More and more research is being done and the latest magazine I received said they have come a long way in finding medications that will let us live long lives. Also, if she needs someone to talk to, please have her contact me. May I ask where you all live? I ask because I may know of someone who can help out in your area. Is she going to a support group? Please tell her to keep her spirits up, don't let the Crohn's devil get the best of her. A good attitude means so much with this disease. There is going to be a break through soon!
