Posted 7/18/2016 9:17 PM (GMT 0)
I haven't posted in awhile ( not that I was ever prolific )..... Going on week 24 of a severe flare up that put me in the hospital for 5 days several weeks ago. Started Remicade in hospital, and had my week 2 infusion last Sunday and not seeing a single shred of positive change from it. I've already failed asacol ( made me bleed like a stabbing victim ), uceris ( immediate systemic steroid side effects with hellish abdominal pain ), another prednisone taper ( temporary relief at high doses but side effects ,specifically the most gruesome and painful cystic acne you may have ever seen, that I just cannot tolerate ever again ), and now onto Remicade which so far has not done a G'darn thing to help. It doesn't seem like there is very much left to try assuming I fail on Remicade ( started Imuran at the same time but my pancreatic enzymes blew up after 10 days on it and I stopped taking it because the last thing I need now is a sweet case of pancreatitis to add to the fun )......
What is left? Entyvio or Humira ( doubtful that another Anti-TNFa would help if remicade doesn't do a thing )?
Absolutely terrified of surgery after reading the horror stories and I really want to keep my colon intact..... I know many here have probably been through worse, much worse, but for me I don't think I've ever been at a lower point. I can't do any of the things that I loved to do anymore. My quality of life is literally in the toilet. I suffer every single day with no end in sight and it just never, ever seems to stop. I haven't slept through a night since early February. I've never felt more helpless in my entire life. I'd do just about anything for one normal day again. I just needed to vent....