Remicade has not worked at all...it makes the slightest bit of difference but enough to reduce the prednisone. I've been on prednisone for almost two years and making due with the 20mg b/c when I'm on 40mg with the Remicade my immune system is severely attacked and I cannot handle any form of infection. I'm just now without any
open wounds, so my GI and I decided to stay and struggle with the 20mg until the surgery.
I'm having a horrible time with weight gain. I've packed on over 30lbs and the only way I can get it off is if I fast for a week at a time...and that's not fun. I'm currently unhappy b/c the Remicade has caused some solidity to the bm's, but that hurts even more to pass through than the liquid...the Remicade also causes me more gas, and that's always a pain...literally. : ) I've consistently had a great amount of blood in each stool, and am just so very tired.
My family has finally caught on to my struggles and sadness...it's becoming more and more difficult to mask the longer I'm suffering...and they are really pushing for something to be done. It is do hard to get through the day feeling the way I do. I drive out of town for work and the past couple weeks I've been slouched against the door/window b/c it's too hard to keep my head up. I have been drinking Ensure at least twice a day and I'm noticing a little change in my energy...but not much. I'm also taking B complex twice a day and dissolveable B12 tabs whenever I think about
them. I'm desperate for energy and just for the motivation to get off the couch.
So, I'm ready...I am not going to wait for a miracle drug or any kind of funky home remedy. The fact is, with pancolitis the entire colon is diseased and it is sometimes the most difficult to treat b/c the below the waist meds do not reach the full length of the colon. My body just is not reacting to the treatments, and even a week after my 5th infusion, which was only 4 weeks after my 4th, I'm still bleeding, still have extreme urgency, and still not sleeping through the night. I'm sad and tired.
I've never been in remission, so battling this through a pregnancy, first year with our baby, staph infections, abscess removals, and just the constant burden of needing a bathroom...we're ready!
: ) Robin
Dx-May 2007 Asacol-2400mg bid Prednisone-20mg Remicade-5 Tx
Paxil-40mg Prilosec-bid Multivitamin Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet! I appreciate the small things in life...the little joys that occur every second of every day. Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!