Well, I've been looking for things to do with my recently acquired insomnia. Natalie reminded me that her friend Paige created this blog for us. I thought this might be a way for me to fill some of those sleepless hours....So here goes....
I thought I'd start my first post with why I am not able to sleep in the first place.... I've been taking medications to fight a flare-up I have been having with crohn's disease. For those of you who don't know, I was diagnosed with Crohn's on my mission in Sweden in Spring 2005. If you don't know what Crohn's disease is, it is an autoimmune disease that attacks the digestive system with ulcerations and fistulas that can develop anywhere from your mouth on down. There's no cure, but it can be managed with medication and surgery as a last resort. NOT FUN!!!
It was really weird how it all started. All of a sudden, I just started losing weight without even trying... Then other symptoms started... an almost constant fever, sharp abdominal pain, loss of appetite, diarrhea, even more weight loss, and even a weird eye infection. With the help of a dear Swedish person, I was able to work through the cracks of socialized health care and find a doctor that was with it enough to come to my diagnosis. After a colonoscopy that showed some pretty major inflammation in my large intestine, I was hospitalized in Malmo, Sweden. I went for a week without food, being fed nutrients through an IV to give my digestive system a rest and allow the prednisone and antibiotics to do their magic and let me heal.
I came home from Sweden taking a few different medications waiting to get into a specialist in the States. I weighed almost 50 pounds less than when I had left on my mission. It turns out I have one of the worst forms of Crohn's disease, where I can develop fistulas where growths connect from my intestines to other organs or make new openings in the skin. I started to develop these fistulas, and my doctor immediately placed me on the IV therapy treatment Remicade.
I would receive Remicade infusions every 8 weeks, and this worked a miracle for the next 3 and a half years. I was virtually symptom free and I was enjoying being in remission. After some time, I started to develop the same symptoms that I had above. My doctor increased my IV infusions to every 6 weeks. I had a colonoscopy and it showed mild inflammation had returned.
In January 2009, I started seeing a different gastroenterologist to get another opinion on how I might get Crohn's under control.... I started a new drug called Cimzia, where I get a shot in my belly once every 4 weeks. It really worked wonders like Remicade the first few treatments, but to my dismay, I started to feel the nasty symptoms coming back.
Since then, I have been trying out different drugs to try and get things under control. These past couple of months have been especially difficult. I have lost about 25 pounds total in that time frame. I have experienced the worst pain I have ever felt in my life. I was hospitalized with dehydration and pancreatitis due to another medicine that I tried. I have made 2 visits to the ER as well. IT'S BEEN CRAZY!! During my last meeting with my doctor, I have learned that it is now coming down to surgery to remove the inflammed parts of my intestine. My doctor wants me to give Remicade one last try since it worked so well for me before. He tells me I have about a 40% chance of it working, but risks of having a reaction are greater when going back to it. It's been quite the emotional roller coaster I must say.
I hope that this post wasn't too negative. Along the way, I have had such great support from my friends and family. I couldn't have gotten through this without Natalie. She has done so much for me to keep me comfortable and happy both physically and mentally. She's my guardian angel! So, I'm waiting to have my "first" remicade treatment sometime this week. I should know within a couple of weeks whether or not it's going to work for me. We'll keep ya'll posted!! :)
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