To be honest, I wish I had tried Remicade a lot sooner than I had...I was on 40mg Prednisone and 2400mg Asacol twice a day (though I had severe pancolitis), and nothing was working. I didn't react to the Remicade either, but I wish it was tried sooner so we knew that it was a joke like the rest of the meds sooner, as I suffered a great deal for a long time before my surgery.
I feel that Remicade is very beneficial for many people, and I would hate for you to mess around with other medications that may or may not be beneficial. Your doctor knows you and knows the medications available. My GI didn't even attempt certain medications b/c I was not reacting to ones that normally would have made a difference. I also had very poor side effects (immune system wise) with the combination of meds and I just could not handle them anymore.
I personally do not feel that jumping into the Remicade is bad choice b/c UC flares are no laughing matter and I feel that experimenting when you are in pain, suffering and going to the bathroom with urgency over 15 times a day is no way to live. I completely understand how you feel, and as I said, I wish we just went straight to the Remicade b/c I suffered way to long. The worst I got sent me to the bathroom around 40-50 times a day (from midnight to midnight). I did not sleep much b/c of my constant bathroom breaks and no matter what I ate caused pain and extra bleeding. My colon was angry all the time and there was nothing I could do to make it happy. : ) So I just got rid of it, along with my rectum b/c the hemorroids were ridiculous and I was just sealed up b/c I never want to go poo again! That's just my opinion. : ) I was traumatized and spent enough time in the bathroom as it was. My best friend is funny, she told me that I probably spent enough time in the bathroom during my flares that most people do in their entire lifetime. So I already put in my time and dues to the bathroom gods. : ) We all have a wonderful sense of humor about
my disease and my surgery. : ) I call my pouch my 'accessory' and am in the process of designing designer pouch covers b/c most of us have permanent ileos, so why not make them pretty?! : ) Even for those who have the j-pouch in their future, why not enjoy or at least make the best of the ostomy while they have it?! I'm super excited about
this and am shopping around for a good sewing machine so I can get going on different concempts to see what's the best. But that's all beside the point...you really should think about
what is going to get you into the remission the quickest without much wait or experimentation...that's my opinion. Suffering is serious business and I hope you can take control of your UC as soon as possible.
: ) Good luck to you!!! : )
: ) Robin
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
"Your mind is like a parachute, it only works when it is open." -Unknown