I was diagnosed when I was 14. I went through a multiple of tests and finally after multiple Drs they diagnosed me with Crohn's Disease. I was put on Asacol 2400mg daily, entocort (cant remember the dosage) and was told to take a multi vitamin, fish oil, and calcium. A couple weeks later I was put on high dose of prednisone 40mg and also imuram 150mg daily. Eventually I started feeling better and thought the medicine was working. I had minor flares here and there and was put on prednisone to get them under control. When I was 17 I was hospitalized for 2 weeks due to a major flare, and ureter blockage and kidney inflammation. I was put on high dose IV prednisone, imuran, asacol, morphine for pain and all my vitamins. My Dr wanted to do another colonoscopy to see what was going on and from what he saw he decided the imuran was no longer working so he suggested remicade for when I get out of the hospital. I eventually started remicade 2 weeks later and was just starting to taper down from the steroids. At first it seemed like the remicade was working wonders and everything was going well until I started to get flare ups in-between infusions. So my Dr increased the dose to 10mg/kilo that seemed like it was working well. I then turned 19 and my pediatric gastroenterologist decided it was time for me to move to an adult Dr (yay) lol I have had lots of problems trying to find a Dr that can help me. Until the past two weeks were I started to flare up again In between infusions. We decided to move the remicade up to every 6 weeks and schedule another colonoscopy which I had this past Monday. The colonoscopy went horrible I woke up in excruciating pain and actually pulled me Iv out of my hand and was crying it hurt so bad. They ended up putting the iv back in and gave me torodal and fentanyl for pain. My Dr that day told me that he can no longer see me due to my disease was way to advanced for him so he recommended me to a Dr at the university of Michigan. My Dr found that the crohns has spread to my large intestine (and said i have crohns colitis) and decided that the remicade wasn't working and that hopefully this new dr can figure something out. He put me back on a high dose of prednisone. My Michigan appt isn't till April 19th and so I also found Another dr for a second consultation to see what he thinks. His office squeezed me in today and he said that the asacol isn't working, and remicade isnt working. We talked about surgery but he said my disease has to be all I'm one spot for surgery to even happen. We are getting a ct done to figure out where everything is localized and to see if I have a fistula. He also is starting me on cimzia. I am finding out tomorrow if my insurance will cover it and hopefully start it tomorrow or Monday sometime. I'm very frustrated because everything seems to stop working and the prednisones side affects are terrible on my body. I have had a major problem with my weight, mood swings, hot flashes and severe joint pain on top of insomnia. Does anyone have any suggestions, I'm ready to try anything to get this under control, my life is affected by it tremendously and I want to start to take back control over it and live it like a normal 19yr old! Please help!
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