My name is Alexis. I'm 24 and have had Crohn's for 3 1/2 years. I have been on Remicade, Cimzia, Humira, and then went back on Remicade again. I have also been on 6mp, Prednisone, Asacol, and many others. I have all the typical symptoms, fever, diarrhea, stomach pain (sometimes unbearable). I also have oral crohns, which I was put on Thalidomide for. My mouth sores get so bad it hurts to talk. I have tried EVERY rinse, steroid cream, nothing works. Thalidomide worked for a while, but my legs and feet started to go numb, so I came off of it. Remicade works, but only for a few weeks.
I had my last dose of Remicade 3 weeks ago. I had a CT scan last week which showed 1 1/2 feet of my intestine severly inflamed. Remicade works great...for about 3-4 weeks at its max dose of 10 mg/kg.
My Dr. said the last medicine for me to try is the "new" version of Tysabri. I have said no to Tysabri due to the chance of PML (the brain disease which leaves you basically brain dead). There is a new study for an "improved" version of Tysabri, which my Dr. wants me to join. I asked him about surgery, he said surgery is next if Tysabri doesn't work, but is concerned about my mouth being that he can't exactly take my mouth out!
I am really scared of this drug. I am leaning towards surgery, but am scared of what my Dr. will say if I tell him I want surgery rather than being a part of this study.
I am so tired of being miserable. I recently married my boyfriend of 7 years, and would love to start having children. I feel like surgery will give my at least a few good years, and hopefully if I needed to have surgery again years down the road, new medical treatments will be available by then.
I am looking for opinions, should I join the study or try for surgery? Thank you for your help
I had my last dose of Remicade 3 weeks ago. I had a CT scan last week which showed 1 1/2 feet of my intestine severly inflamed. Remicade works great...for about 3-4 weeks at its max dose of 10 mg/kg.
My Dr. said the last medicine for me to try is the "new" version of Tysabri. I have said no to Tysabri due to the chance of PML (the brain disease which leaves you basically brain dead). There is a new study for an "improved" version of Tysabri, which my Dr. wants me to join. I asked him about surgery, he said surgery is next if Tysabri doesn't work, but is concerned about my mouth being that he can't exactly take my mouth out!
I am really scared of this drug. I am leaning towards surgery, but am scared of what my Dr. will say if I tell him I want surgery rather than being a part of this study.
I am so tired of being miserable. I recently married my boyfriend of 7 years, and would love to start having children. I feel like surgery will give my at least a few good years, and hopefully if I needed to have surgery again years down the road, new medical treatments will be available by then.
I am looking for opinions, should I join the study or try for surgery? Thank you for your help
