I really need Remicade to work, so I am a little scared to even talk about
it.
I have had UC for 20 years and tried all kinds of stuff, but the worst of it would be the steroids. I didn't think I really took that much, but I have some sort of flare almost every year and it often resulted in some rectal steroid. The end result is I have osteoporosis, so steroids are not an option anymore. Even though I knew for over a year I never made a plan to deal with a major flare when it comes. I really figured I could manage this disease with 5-ASAs, diet, healthy lifestyle and exploring every alternative therapy, etc. I would say I was in denial.
I usually flare in the winter/spring and I thought I more or less escaped it this year, but it struck in May. It kind of smoldered along (6-9 BMs/day) and got better for a few days, but then last week it came back with a vengeance. The last time I had a flare like this I ended up in the hospital for 3 weeks. Things peaked on Wednesday where I had 20+ BMs. These were the severe cramping, nauseating kind of BMs and I was really on the verge of going to emergency. Add in the fact that my wait was already down cause things started in May and I had essentially stopped eating for days. I was in true panic because steroids are out and so I decided Remicade is my only option.
I called my GI's nurse and she made me an emergency appointment to see my GI the next day. They really wanted me to go on the Golibumab trial, but I couldn't wait and go through all the sigmoids and stuff, so I went for Remicade. Once I made the decision my GI sent me to the nurse to work out the details. Then I learned that I wasn't going to be getting Remicade until at least next week because I needed to have the TB screen and work out insurance coverage. That was the last straw. I completely broke down in front of the nurse. I never did anything like that before. The thought of trying to last the weekend in my current state was unbearable. The amount of pain I was in was so extreme, but I am sure everyone can relate. The nurse was so nice and she gave me a chance to calm down, but what she was really up to was getting permission from my GI to give me there personal supply of Remicade the very next day (provided my chest x-ray was good).
She also convinced me, if I take a short low dose of pred, it won't affect my osteoporosis. I don't really believe that, but I took 15mg last night and my stomach finally stopped visibly throbbing. I never really took pred much in the past, but I can't believe how much it worked like a pain killer. It got me through the night and today I had my first infusion.
My fingers are crossed that it will work, but I know the odds are so so for Remicade and UC. The list of alternate therapies I've tried is very long and quite serious, including a trip to Syndey for fecal transplant. I was positive that if I kept trying I'd find the solution that would work for me. I really thought I could avoid immune suppressants. I still might explore human whipworms if I can get out of this flare, but it is way too early for that kind of talk.
I have read a few positive stories of Remicade and UC on here, but I could really use a few more reminders if there are any out there.
