@doggie- I love remicade. I know it sounds scary but it's seriously the only thing that's helped me. I know if I wasn't on it my flare would land me in the hospital. This one small spot of inflammation is driving me nuts. I should feel the effects over the weekend. It kicks in pretty quickly for me. So my GI should have a good idea of what's going on inside by next Tuesday. Suppositories have really not done much for me and enemas hit higher up where the spot is. I do have support but the reality is they don't fully understand the disease and wear on the body mind and emotions. Yes I have two little ones at home which can be challenging but they make my world go round and I honestly keep fighting for them.
@old Mike - I truly believe the only thing that works for me is remicade. Lialda and vsl are habitual at this point. My insurance will no longer cover the ds so when I run out I won't be able to get anymore. I'm dropping from two packets to one after my infusion. I'd love to stop the Lialda and my GI gave me the ok but of course it's scary to rock the boat. I want to be on nothing but the remicade.
@nssg- I'm going to bring up the surgery again when I see my GI Tuesday. I did have one consult before the holidays last year. I did not like the surgeon and he told me he wouldn't operate on me. I can't just leave the inflammation going. So we are going to have to do something. I'm praying the next infusion stops everything but I've been hoping that since I started double doses in October.
@byebye- how much of your colon was refractory? My colon looks like it's never been touched by uc except for this one spot. Makes me CRAZY.
Diagnosed Nov 2012 after birth of first child, Left sided UC
Remicade - 10 mg/kg every 7 weeks, 3 Lialda
Enemas, VSL#3 DS, prenatal vitamin, vit D, biotin, fiber
You gotta learn to dance in the rain
Post Edited (TotesMagotes) : 4/27/2016 11:03:09 AM (GMT-6)