Hi!
I'm a 16 year old crohn's patient who was diagnosed in 2009 when I was 12. I didn't have regular symptoms of crohn's, just the chills, a slight low grade fever, blood in stool, fatigue, headaches, and weight loss. The doctors didn't know what was wrong with me, so I had to go through a bunch of tests. They found out through a colonoscopy that I had Crohn's. I missed so much school that year. What my doctor decided to do was put me on a total liquid diet via tube feeding, which sucked. I also had steroids for a couple of months too. I gradually gained back my lost 20 lbs and felt much better. I also got to eat a little bit more too. After about a year and a half I stopped having the tube feedings and went on Pentasa and 6-mp. I was in remission for 4 years until just last August my doctor wanted a check up colonoscopy and MRI because my ESR and CRP rate was high. By that time I had switched to Lialda and kept on the 6-mp. I was very confused because I wasn't showing any symptoms at all except the occasional blood in the stool. I admit that I wasn't taking my medicine regularly too. The colonoscopy went great but the MRI showed some serious inflammation in the small intestine I think. I was shocked when he said I might have to go on Remicade. By this time it was in January, and I still had no symptoms. He said based on the inflammation in my small intestine, I would have severe cramping and fatigue but for some reason I felt fine! Anyway, I started taking my meds every day and taking a lot more vitamins too. We went to a second doctor for advice and she said either do Remicade or the liquid diet. I'm leaning towards a liquid diet right now. I get my blood test done in the middle of April and I see my doctor in March for the verdict. As of now I have no blood in my stool but I do get these unexplained very low fevers that go from 99.5-100 and they go away with Advil. I've only had 5 since January. But to my questions:
1. I'm going to college in 1 year and a half. If I do Remicade I really don't want to travel all the way to the doctors and back every 8 weeks for the IV. I'll probably be very busy too. What should I do with this decision?
2. Does anyone else get these unexplained fevers? I really don't know what to do with them. They usually come on around 7 pm and I get the chills too.
Thank you for reading my extremely long post!
I'm a 16 year old crohn's patient who was diagnosed in 2009 when I was 12. I didn't have regular symptoms of crohn's, just the chills, a slight low grade fever, blood in stool, fatigue, headaches, and weight loss. The doctors didn't know what was wrong with me, so I had to go through a bunch of tests. They found out through a colonoscopy that I had Crohn's. I missed so much school that year. What my doctor decided to do was put me on a total liquid diet via tube feeding, which sucked. I also had steroids for a couple of months too. I gradually gained back my lost 20 lbs and felt much better. I also got to eat a little bit more too. After about a year and a half I stopped having the tube feedings and went on Pentasa and 6-mp. I was in remission for 4 years until just last August my doctor wanted a check up colonoscopy and MRI because my ESR and CRP rate was high. By that time I had switched to Lialda and kept on the 6-mp. I was very confused because I wasn't showing any symptoms at all except the occasional blood in the stool. I admit that I wasn't taking my medicine regularly too. The colonoscopy went great but the MRI showed some serious inflammation in the small intestine I think. I was shocked when he said I might have to go on Remicade. By this time it was in January, and I still had no symptoms. He said based on the inflammation in my small intestine, I would have severe cramping and fatigue but for some reason I felt fine! Anyway, I started taking my meds every day and taking a lot more vitamins too. We went to a second doctor for advice and she said either do Remicade or the liquid diet. I'm leaning towards a liquid diet right now. I get my blood test done in the middle of April and I see my doctor in March for the verdict. As of now I have no blood in my stool but I do get these unexplained very low fevers that go from 99.5-100 and they go away with Advil. I've only had 5 since January. But to my questions:
1. I'm going to college in 1 year and a half. If I do Remicade I really don't want to travel all the way to the doctors and back every 8 weeks for the IV. I'll probably be very busy too. What should I do with this decision?
2. Does anyone else get these unexplained fevers? I really don't know what to do with them. They usually come on around 7 pm and I get the chills too.
Thank you for reading my extremely long post!
