- Joined
- Mar 10, 2012
- Messages
- 114
When I was first diagnosed in 2007, I had severe stomach cramps, persistant bloody diarrhea, nausea, and significant weight loss. I started with Pentasa, then a few more in the same family. We soon found out I'm allergic to the active ingredient, mesalamine. This landed me in the hospital for a few days, where I began Remicade. I completely improved for 6 months before I stopped responding. In 2008, I started Humira (my wonder drug). I lived a disease free life for almost 2 years, with the exception of 2 flare-ups, both taken care of by a round of prednisone. In 2010, I started having another flare-up. After several months of steroids and increased Humira, my symptoms only got worse. I then added methotrexate to the combination. Still, I didn't see any improvement.
My regular gastroenterologist sent me to a GI clinic. They increased my methotrexate and Humira. Still, no results. I started Cimzia and Imuran (which I also took back in 2007) in July of 2011. I never improved. In fact, I only continued to get worse.
In the last 6 months, I've spent over a month in the hospital, been on TPN, had a blood transfusion, and have been on tons of steroids (about 10 rounds in the last year!). I can barely walk most days. I stay in constant pain with relentless diarrhea and nausea. I also have persistent, unexplainable fevers and recurrent C Diff infections. I had to go on medical leave from my job, which I loved with great passion, because standing and moving about is too much on me. Towards the end of working, after about 15 minutes, I was already throwing up in a trashcan on the salesfloor and barely able to stand each day I worked.
However, I am currently waiting to hear back from a doctor in Chicago about a possible stem cell transplant or a surgery. They are making a clear diagnosis first. Apparently, I may have both Crohn's disease and ulcerative colitis. Once the pathologists make a decision, I'll know whether I'll be undertaking the SCT (for Crohn's) or the surgery (for ulcerative colitis). Fortunately, I have a rare case of Crohn's because of the location in my colon of the disease and if they do perform surgery, there's a chance they won't have to remove the entire colon (cross your fingers!)
So, while I am definitely having a rough time right now, and there are many days I feel like my disease has taken over, there's still hope for my future!
My regular gastroenterologist sent me to a GI clinic. They increased my methotrexate and Humira. Still, no results. I started Cimzia and Imuran (which I also took back in 2007) in July of 2011. I never improved. In fact, I only continued to get worse.
In the last 6 months, I've spent over a month in the hospital, been on TPN, had a blood transfusion, and have been on tons of steroids (about 10 rounds in the last year!). I can barely walk most days. I stay in constant pain with relentless diarrhea and nausea. I also have persistent, unexplainable fevers and recurrent C Diff infections. I had to go on medical leave from my job, which I loved with great passion, because standing and moving about is too much on me. Towards the end of working, after about 15 minutes, I was already throwing up in a trashcan on the salesfloor and barely able to stand each day I worked.
However, I am currently waiting to hear back from a doctor in Chicago about a possible stem cell transplant or a surgery. They are making a clear diagnosis first. Apparently, I may have both Crohn's disease and ulcerative colitis. Once the pathologists make a decision, I'll know whether I'll be undertaking the SCT (for Crohn's) or the surgery (for ulcerative colitis). Fortunately, I have a rare case of Crohn's because of the location in my colon of the disease and if they do perform surgery, there's a chance they won't have to remove the entire colon (cross your fingers!)
So, while I am definitely having a rough time right now, and there are many days I feel like my disease has taken over, there's still hope for my future!
