Posted 2/5/2014 12:06 AM (GMT 0)
Your UC sounds pretty much as severe as mine was.
I have had the blood transfusions and fluids and all that, just got 2 more units of blood last Friday. They discharged me from the hospital with a hemoglobin of 7.8 and I was still bleeding some when I went home and ended up with a hgb of 6.8 2 weeks later, and VERY symptomatic. I am also pregnant and some people become anemic just from that so I had a lot working against me.
The plan for me initially when I was in the hospital was to start mesalamine, but they could never get me off the IV steroids because I would rebound too bad without them. For that reason they started me right on Remicade while I was still in the hospital. I am now home, have had 2 Remicade infusions, and I am on 30mg of prednisone a day (plan is to taper off 5 mg a week...its dangerous to stop a steroid cold turkey so that is why you have to taper).
The Remicade is working so well for me that I am finding I can pretty much eat anything without consequences in the bathroom. At first I was not eating any gluten, no dairy, no fruits or veggies, and I couldn't even eat potatoes. I have been able to add foods back little by little. Pretty much the only thing I haven't added back yet are very fibrous foods.
At my worst, I was in the bathroom 20x a day, watery and bloody and severe abdominal cramping with eating and using the bathroom. Now I only get occasional gas pains, mostly formed stools and no visible blood. I usually go to the bathroom once before bed, once in the middle of the night and once in the morning. Remicade seems to have been a miracle for me and I just keep praying that it continues to work like this for me.
I know everyone has such different experiences and stories, this is how things have turned out for me and I will always encourage people to try the medications their doctors offer to them. I am so grateful that I had aggressive doctors and I was TOTALLY anti-medication before I was every hospitalized (I am a nurse and I was pretty sure I had UC before I was diagnosed--I knew the medications used to treat it and I was 150% against going on any of them) but after my whole ordeal and thinking about my little one in the oven, I will literally do anything that I need to be healthy. After being so anemic and losing 25 pounds and being scared all the time (I still am sometimes), its nice to have this little bit of relief.
I hope that you can find the same relief, and don't be afraid of the biologics. I'm almost afraid sometimes that it is too good to be true that the Remicade has worked so well for me!