B
bball diva
Guest
My story...
Wow where do I begin? This has been a roller-coaster ride for the last 19 years! I was diagnosed when I was 17 and a senior in high school. My parents thought I had an eating disorder because I stopped eating and lost about 30 pounds in a month. I missed over 40 days of school and had to quit the softball team and lost any chance at a scholarship. This was my introduction to Crohn's.
I was started on the usual Prednisone but couldn't continue this because my parents couldn't afford it. I couldn't even fathom going to college until I got my disease under control, but couldn't afford the meds!
My biggest symptom was the diarrhea. It was horrible! It would come at any time and any place. I was so embarrassed by these symptoms so much that I took so many Immodiums to control the diarrhea. I would take up to 12 pills a day! Plus, I would never eat unless I was at home because as soon as I ate something I would have to go to the bathroom! For the next 10 years, this is all I took for my CD.
About 10 years ago, I had enough! I finally had a good job with good benefits so I went back to a GI doctor and started on meds again. I think I was back on Prednisone at this time. A colonoscopy was performed and indeed my disease was active.
I was never very faithful in taking my meds but eventually after a huge flare 3 years ago I started taking my disease seriously and told the doctor that I was ready to do whatever it takes to regain control of my CD. He put me on different combinations of drugs: Lialda, Prednisone, Entocort, Pentasa. Each combination of meds would work for a little while and then stop working. More symptoms starting to show, mainly in my blood work. I became severly aenemic and had to have iron infusions everyday for 10 straight days. I started to become severly fatigued with muscle weakness and joint pain. This would just not do! I have a job where energy is a must (I teach 7th graders!) and I was finding it difficult to get the energy to get up in the morning and go to work. Not to mention, the embarrassment of having to get someone to "watch my class" when I would have an episode.
Finally I was put on the "next step-up" and put on Imuran, while still taking Pentasa and Entocort. This seemed to work well, but the same thing kept happening...it would eventually stop working and the doctor kept having to increase my dose. Soon I developed a fistulae, which I had never had before, so my dose was increased again. I would have routine blood tests and liver panels to monitor my health while on this medicine. About 3 weeks ago I had an increase in my liver enzymes so a liver unstrasound was ordered. Luckily there was no damage, but the doctor stopped my Imuran as a precaution.
So now, I will be starting Remicade in two weeks and am a little nervous about it because of the side-effects. I tend to get infections easily which is not difficult when you work around kids as much as I do. I just want to feel normal again and hope that this will do the trick!
Wow where do I begin? This has been a roller-coaster ride for the last 19 years! I was diagnosed when I was 17 and a senior in high school. My parents thought I had an eating disorder because I stopped eating and lost about 30 pounds in a month. I missed over 40 days of school and had to quit the softball team and lost any chance at a scholarship. This was my introduction to Crohn's.
I was started on the usual Prednisone but couldn't continue this because my parents couldn't afford it. I couldn't even fathom going to college until I got my disease under control, but couldn't afford the meds!
My biggest symptom was the diarrhea. It was horrible! It would come at any time and any place. I was so embarrassed by these symptoms so much that I took so many Immodiums to control the diarrhea. I would take up to 12 pills a day! Plus, I would never eat unless I was at home because as soon as I ate something I would have to go to the bathroom! For the next 10 years, this is all I took for my CD.
About 10 years ago, I had enough! I finally had a good job with good benefits so I went back to a GI doctor and started on meds again. I think I was back on Prednisone at this time. A colonoscopy was performed and indeed my disease was active.
I was never very faithful in taking my meds but eventually after a huge flare 3 years ago I started taking my disease seriously and told the doctor that I was ready to do whatever it takes to regain control of my CD. He put me on different combinations of drugs: Lialda, Prednisone, Entocort, Pentasa. Each combination of meds would work for a little while and then stop working. More symptoms starting to show, mainly in my blood work. I became severly aenemic and had to have iron infusions everyday for 10 straight days. I started to become severly fatigued with muscle weakness and joint pain. This would just not do! I have a job where energy is a must (I teach 7th graders!) and I was finding it difficult to get the energy to get up in the morning and go to work. Not to mention, the embarrassment of having to get someone to "watch my class" when I would have an episode.
Finally I was put on the "next step-up" and put on Imuran, while still taking Pentasa and Entocort. This seemed to work well, but the same thing kept happening...it would eventually stop working and the doctor kept having to increase my dose. Soon I developed a fistulae, which I had never had before, so my dose was increased again. I would have routine blood tests and liver panels to monitor my health while on this medicine. About 3 weeks ago I had an increase in my liver enzymes so a liver unstrasound was ordered. Luckily there was no damage, but the doctor stopped my Imuran as a precaution.
So now, I will be starting Remicade in two weeks and am a little nervous about it because of the side-effects. I tend to get infections easily which is not difficult when you work around kids as much as I do. I just want to feel normal again and hope that this will do the trick!
