I've been flaring since April now. I had a brief "remission" type thing at the beginning of july, but I can pretty much equate that to the C-diff infection being cured at that time. I was started on prednisone in the hospital and I've been on it since then. I started feeling really bad at the end of july. I ended up in the hospital again, where they told me to increase my pred back up to 40mgs. I had a partial obstruction at the time, but it passed on it's own after a few days. The prednisone did nothing to my stomach. I felt worse and worse every day. My face continued to swell and I continued to get acne all over my chest, back and face. I was back to the point where eating anything absolutely killed me, but I was so hungry from the pred, I ate anyways. I started remicade about a month ago. After my first infusion, my stomach and joints started hurting a little more and I began having upper GI pain and pain under my ribs. Fast forward to last week. I'm in alot of pain. My painkillers are working. I sit on the toilet trying to pass a bowel movement. 40 excruciating minutes later, I stand up, soaked in sweat, shaking like a leaf and dizzy. I look into the toilet to see red. The whole bowl was filled with blood. I look at the ground. The blood is still dripping from me. I inspect my toilet. There are blood clots IN my actual stool. They were formed stools, and they had black and red blood clots mixed into them. I call my GI. I'm told that I need to go to the er immediately. So I go 6 hours later. They give me morrphine and tell me to see my GI on tuesday. So saturday hits, like a ton of bricks. All day I'm hobbling back and forth from the bathroom. I'm out of painkillers so the diarrhea has made a full comeback. Blood, mucous, the whole shebang. The cramping is unbearable. The sharp, stabbing pains are making me crazy. I somehow manage to drive myself to the dr. After doing an exam, he comes back in with a piece of paper, telling me I need to be admitted to the hospital. So I drive home, in tears from the pain. My boyfriend went to the drug store and picked me up some painkillers. Not great ones, but they will keep me out of the hospital until tuesday.
So here I am. Still in pain every day. nauseous everyday. Getting weaker and more exhausted everyday. Watching everyone I love just move on with their lives, while I waste mine away on the couch. Not by choice, but because I physically can not do anything. I'm taking all the drugs. I'm following the diets. I'm taking the supplements. I'm resting. And yet, I'm just as sick as I was in april. Nothing has changed. Nothing has helped. Where do I go from here? What else can I do? The drugs don't work. The doctors don't know what I'm going through, therefore won't prescribe the right medication I need to feel just ok. So that I can get out of my house. So that I can eat without wanting to die after. So that I can hug my boyfriend and sleep in the same bed as him. I just need to know what else I can do? What else my dr can do. I'm tapering off of prednisone and I will never go on it again. It has stopped working for me, and isn't giving me any positive effects. Just negative. So I'm getting off it. I haven't felt a single thing from being on imuran. It's been over 2 months now. My hair is falling out like crazy, but that's about it. Still waiting I guess. I've had two remicade infusions, each time leaving me feeling even worse than before. What's the point of taking these medications if they are not working? My blood work proves it. everything is still elevated where it should be low, and low where it should be elevated. Nothing has changed. I have wasted my entire summer being a sick person. An entire summer holding onto the words of my dr "you'll be in remission by july" "you'll be in remission by august" "the remicade will work." Clearly he was wrong.
I see him on tuesday, and I'm going to ask to be admitted. I have fever, uncontrollable sweats and chills, nausea, bloody diarrhea, my bloodpressure is low and my heart rate is very high. I don't know what else to do. I thought that once I got a diagnosis, I would get better. Maybe I was stupid to think that. I just want to be me again. I used to be so fun, and happy. Now I'm barely human. I feel like a broken, old bag of bones that someone threw on the couch a few months ago and forgot to move. I need to get better. What else can I do?
So here I am. Still in pain every day. nauseous everyday. Getting weaker and more exhausted everyday. Watching everyone I love just move on with their lives, while I waste mine away on the couch. Not by choice, but because I physically can not do anything. I'm taking all the drugs. I'm following the diets. I'm taking the supplements. I'm resting. And yet, I'm just as sick as I was in april. Nothing has changed. Nothing has helped. Where do I go from here? What else can I do? The drugs don't work. The doctors don't know what I'm going through, therefore won't prescribe the right medication I need to feel just ok. So that I can get out of my house. So that I can eat without wanting to die after. So that I can hug my boyfriend and sleep in the same bed as him. I just need to know what else I can do? What else my dr can do. I'm tapering off of prednisone and I will never go on it again. It has stopped working for me, and isn't giving me any positive effects. Just negative. So I'm getting off it. I haven't felt a single thing from being on imuran. It's been over 2 months now. My hair is falling out like crazy, but that's about it. Still waiting I guess. I've had two remicade infusions, each time leaving me feeling even worse than before. What's the point of taking these medications if they are not working? My blood work proves it. everything is still elevated where it should be low, and low where it should be elevated. Nothing has changed. I have wasted my entire summer being a sick person. An entire summer holding onto the words of my dr "you'll be in remission by july" "you'll be in remission by august" "the remicade will work." Clearly he was wrong.
I see him on tuesday, and I'm going to ask to be admitted. I have fever, uncontrollable sweats and chills, nausea, bloody diarrhea, my bloodpressure is low and my heart rate is very high. I don't know what else to do. I thought that once I got a diagnosis, I would get better. Maybe I was stupid to think that. I just want to be me again. I used to be so fun, and happy. Now I'm barely human. I feel like a broken, old bag of bones that someone threw on the couch a few months ago and forgot to move. I need to get better. What else can I do?
