Posted 3/3/2010 12:29 PM (GMT -7)
Hey all-I am very out of the loop around here, but wanted to update. I was released from the hospital last night (I was there for 8 days) and am home now. My GI probably would have preferred me to stay a bit longer, but we had gotten to the point that the only thing they were really doing for me was IV steroids versus oral and there is always concern that I could pick up yet something else just from being there. And since it was evident we were not going to have to move to the cyclosporin rescue treatment, coming home seemed the best option.
My blood levels are holding steady rather than dropping, even though I am still severely anemic, so they were pleased with that. My bowels have been a lot quieter-urgency is down as is frequency, things are forming up, but of course I am still bleeding and I still have painful cramping when I have BMs. And MAN am I weak!!! I got lightheaded from going up and down the steps too much this morning, so I am going to have to act like I did after my c-sections when they told me to plan my days and try to do the steps only once. I am back on iron, of course, but I kind of wish they had done an iron infusion before I left the hospital-oh well.
The first remicade infusion definitely did help, but I am a long way off from remission. For those who have done remicade, did you find it took a while for it to build up and really start working (if it worked for you at all, that is)? The Humira had worked so quickly for me that I am nervous about whether or not the remicade is going to keep helping as I load up on it. I am not sure when I will have my next infusion-a week from Friday, maybe?
Not much else to report. I am back on pred, which I hate, but since I have no choice right now, I am trying to accept it and gear up for the bloating, facial hair, acne, weight gain and everything else is has to offer that I know is coming. I'll be going to the GI on Friday to check in with them and see how things are going. In the meantime, I am trying to rest and rely on my family to take care of me. Thankfully they are AWESOME, and we have had tons of offers from the preschool moms, neighbors and friends for making meals, doing playdates with the kids, etc. But it is hard-I am a caregiver, so reversing roles like this is a challenge for me. But I am blessed, and just thankful that my blood levels are holding steady for the time being! Hopefully I will get back into remission at some point here, and then I think I will start discussing surgery with my GI, just so we are on the same page about things for the inevitable next time.
I hope everyone here is doing well. I tell ya-this disease really knocks you down sometimes, doesn't it???
34 years old, stay at home mom of 2 girls, ages 4 and 3
Diagnosed in March 2007, symptoms started Dec. 2006
OUT of Humira trial-it stopped working
Back on pred (40mg), Rowasa nightliy, Canasa 1000mg in the AM
Also take multivitamins, milk thistle, VSL#3 (2-4 packets daily right now), Ulimate Flora Critical Care, MegaZyme, Turmeric, Bee Propolis, Omega 3, Slippery Elm and PepZin daily. P-seed powder as well (2t. in the AM) Waiting to see what comes next...