my story
My name is Courtney. I am 19 years old and live in Pennsylvania. I was diagnosed with Crohn's Disease 2 months ago. I first started experiencing symptoms 4 years ago, and they were mostly when I was nervous or stressed out about something. As the time went on they became more and more frequent. In December 2010 we had a cancer scare with my mom and I can't remember a time in my life where I was more stressed out and scared. This is what I consider my first flare up. The symptoms were out of control, the worst that I've experienced. Any time I would eat or even take a sip of a drink within minutes I was on the toilet with diarrhea. I would have to go to the bathroom multiple times during meals, and was going to the bathroom 20-30 times a day. I had stomach aches with pain so bad that I was doubled over and wouldn't be able to move for hours. I constantly had back pains also. Even though it was winter, I had to sleep with my ceiling fan on high because of the night sweats. I made an appointment with my doctor because I just couldn't live like that anymore. He diagnosed me with irritible bowel syndrome and gave me medicine that was supposed to help. When I first started taking it, it made me incredibly sick. I slept for 12,14 hours at a time and it didn't help with the number of times I was going to the bathroom and the stomach pains were getting worse. After about a week I started to have an increasing amout of blood in the stools that I passed. I began to lose weight too. Normally I'm around 106 pounds, and was down to 94.6. I made another appointment with the doctor and he said not to take the medicine anymore and that I needed to get a colonoscopy a.s.a.p.. I was terrified.
So, I met with the doctor who was going to be doing the colonoscopy to find out information about what it was, what could be the reasons for the symptoms I was having, and any other question I had. It was scheduled for a few days later, and the doctor had me feeling pretty calm. The prep I had to do the night before was awful. I wasn't allowed to eat any solid food, just broth and liquids. As if I wasn't already going to the bathroom enough, I had to drink a whole bottle of laxatives. I was put to sleep for the colonoscopy, and when I woke up the nurse had a plate of cookies for me to eat on the table next to me. After not eating for over a full day, cookies have never tasted that good. My g.i. put me on prednisone. I was feeling great as I was taking the prednisone every day. The number of times I was going to the bathroom was down to about 10 times a day and the stomach aches weren't as bad. I had a crazy appetite! I couldn't stop eating. I was even craving foods that I normally hated. I kept a food diary to see what foods had an effect on me. A few weeks later I got the results from the colonoscopy and Crohn's Disease was confirmed.
Over the few weeks of waiting before this doctor's appointment I did a little bit of reading online about Crohn's Disease and Ulceritive Colitis, so I was prepared with a few questions. The doctor's appointment was about an hour and a half long. I was given the choice of starting infusions of Remicade or doing self injections as a treatment. I decided on the Remicade. I was to have my first infusion, then the next 2 weeks after that, then another in 4 weeks, another in 6 weeks, and then one every 8 weeks. I had no idea what to expect. Two of my cousins also have Crohn's Disease, the one also gets Remicade infusions and the other has luckily been in remission for a while and doesn't need to have any treatment. My mom got some information from her about what it was like, and it kind of just scared me more hearing what she had to say. The day came and my mom and I arrived at the hospital and we wondered around lost for a little before finally finding where I was supposed to go. The room wasn't that big there was about 10 reclining chairs set up a few feet from each other with another chair beside it. I took the chair all the way at the end, away from the other patients. I sat in the reclining chair and my mom in the one next to it and within a few minutes a nurse came over with paperwork to get us started. Soon enough I was being prepped for an I.V.. The nurse started the Remicade and I also had a blood pressure thing attached to my other arm.
The room I was in quickly filled and from over hearing conversation they were all cancer patients recieving some form of treatment. I was also the youngest person in the room, everyone was about 60 and up. I brought some magazines with me to read because I knew that the I.V. would take a few hours. Whenever I looked up someone was staring at me giving me a very sad look. It made me really uncomfortable. I couldn't exactly say "I don't have cancer, stop looking at me like that!" After I was finished I went home to take a nap because I was pretty tired. I woke up about 3 hours later, went to stretch and felt the worst pain ever in my knees. I tried to get up to see if anyone was home and fell to the floor, unable to put pressure on my legs/knees. I yelled for help and was hysterically crying because I was so scared. My sister came rushing in and called my dad, who then called my mom. My legs were swollen and the pain was unbearable. My mom called the doctor and his nurse called back about a half hour later and said for me to take Benadryl. She said that she's never heard of anyone else having a reaction like that. For those of you reading, have you? As the Benadryl started to work the pain went away and I was able to walk again. Later that night I got a really bad headache and it lasted into the next day. Benadryl also helped with that. The doctor said for me to take the Benadryl before I go for my next infusion and again after.
Two weeks went by and all of the symptoms I was experiencing before were very minimal. I was going to the bathroom once, maybe twice a day and barely had stomach pains at all. Going into my second Remicade treatment I was terrified, because of the reaction I had before. I didn't really have time to get all worked up about it because I slept pretty much the whole day. I didn't experience any weird reactions and I was really happy about it. The next day, (which was Saturday) I felt fine and didn't even have a headache. Sunday (yesterday) when I woke up my back hurt really really bad. I went into the bathroom and looked at my back in the mirror and had bruises on my spine. I looked Remicade's side effects up online and easy bruising/bleeding was listed there. This is all new to me, and it's really starting to get to me. I feel so alone in this, even though I have my mom to talk to, I just want someone who is also going through or has gone through the same things. So I joined this forum! Please feel free to reply to this or message me. I'm open to talking to anyone!
My name is Courtney. I am 19 years old and live in Pennsylvania. I was diagnosed with Crohn's Disease 2 months ago. I first started experiencing symptoms 4 years ago, and they were mostly when I was nervous or stressed out about something. As the time went on they became more and more frequent. In December 2010 we had a cancer scare with my mom and I can't remember a time in my life where I was more stressed out and scared. This is what I consider my first flare up. The symptoms were out of control, the worst that I've experienced. Any time I would eat or even take a sip of a drink within minutes I was on the toilet with diarrhea. I would have to go to the bathroom multiple times during meals, and was going to the bathroom 20-30 times a day. I had stomach aches with pain so bad that I was doubled over and wouldn't be able to move for hours. I constantly had back pains also. Even though it was winter, I had to sleep with my ceiling fan on high because of the night sweats. I made an appointment with my doctor because I just couldn't live like that anymore. He diagnosed me with irritible bowel syndrome and gave me medicine that was supposed to help. When I first started taking it, it made me incredibly sick. I slept for 12,14 hours at a time and it didn't help with the number of times I was going to the bathroom and the stomach pains were getting worse. After about a week I started to have an increasing amout of blood in the stools that I passed. I began to lose weight too. Normally I'm around 106 pounds, and was down to 94.6. I made another appointment with the doctor and he said not to take the medicine anymore and that I needed to get a colonoscopy a.s.a.p.. I was terrified.
So, I met with the doctor who was going to be doing the colonoscopy to find out information about what it was, what could be the reasons for the symptoms I was having, and any other question I had. It was scheduled for a few days later, and the doctor had me feeling pretty calm. The prep I had to do the night before was awful. I wasn't allowed to eat any solid food, just broth and liquids. As if I wasn't already going to the bathroom enough, I had to drink a whole bottle of laxatives. I was put to sleep for the colonoscopy, and when I woke up the nurse had a plate of cookies for me to eat on the table next to me. After not eating for over a full day, cookies have never tasted that good. My g.i. put me on prednisone. I was feeling great as I was taking the prednisone every day. The number of times I was going to the bathroom was down to about 10 times a day and the stomach aches weren't as bad. I had a crazy appetite! I couldn't stop eating. I was even craving foods that I normally hated. I kept a food diary to see what foods had an effect on me. A few weeks later I got the results from the colonoscopy and Crohn's Disease was confirmed.
Over the few weeks of waiting before this doctor's appointment I did a little bit of reading online about Crohn's Disease and Ulceritive Colitis, so I was prepared with a few questions. The doctor's appointment was about an hour and a half long. I was given the choice of starting infusions of Remicade or doing self injections as a treatment. I decided on the Remicade. I was to have my first infusion, then the next 2 weeks after that, then another in 4 weeks, another in 6 weeks, and then one every 8 weeks. I had no idea what to expect. Two of my cousins also have Crohn's Disease, the one also gets Remicade infusions and the other has luckily been in remission for a while and doesn't need to have any treatment. My mom got some information from her about what it was like, and it kind of just scared me more hearing what she had to say. The day came and my mom and I arrived at the hospital and we wondered around lost for a little before finally finding where I was supposed to go. The room wasn't that big there was about 10 reclining chairs set up a few feet from each other with another chair beside it. I took the chair all the way at the end, away from the other patients. I sat in the reclining chair and my mom in the one next to it and within a few minutes a nurse came over with paperwork to get us started. Soon enough I was being prepped for an I.V.. The nurse started the Remicade and I also had a blood pressure thing attached to my other arm.
The room I was in quickly filled and from over hearing conversation they were all cancer patients recieving some form of treatment. I was also the youngest person in the room, everyone was about 60 and up. I brought some magazines with me to read because I knew that the I.V. would take a few hours. Whenever I looked up someone was staring at me giving me a very sad look. It made me really uncomfortable. I couldn't exactly say "I don't have cancer, stop looking at me like that!" After I was finished I went home to take a nap because I was pretty tired. I woke up about 3 hours later, went to stretch and felt the worst pain ever in my knees. I tried to get up to see if anyone was home and fell to the floor, unable to put pressure on my legs/knees. I yelled for help and was hysterically crying because I was so scared. My sister came rushing in and called my dad, who then called my mom. My legs were swollen and the pain was unbearable. My mom called the doctor and his nurse called back about a half hour later and said for me to take Benadryl. She said that she's never heard of anyone else having a reaction like that. For those of you reading, have you? As the Benadryl started to work the pain went away and I was able to walk again. Later that night I got a really bad headache and it lasted into the next day. Benadryl also helped with that. The doctor said for me to take the Benadryl before I go for my next infusion and again after.
Two weeks went by and all of the symptoms I was experiencing before were very minimal. I was going to the bathroom once, maybe twice a day and barely had stomach pains at all. Going into my second Remicade treatment I was terrified, because of the reaction I had before. I didn't really have time to get all worked up about it because I slept pretty much the whole day. I didn't experience any weird reactions and I was really happy about it. The next day, (which was Saturday) I felt fine and didn't even have a headache. Sunday (yesterday) when I woke up my back hurt really really bad. I went into the bathroom and looked at my back in the mirror and had bruises on my spine. I looked Remicade's side effects up online and easy bruising/bleeding was listed there. This is all new to me, and it's really starting to get to me. I feel so alone in this, even though I have my mom to talk to, I just want someone who is also going through or has gone through the same things. So I joined this forum! Please feel free to reply to this or message me. I'm open to talking to anyone!
I'm really glad you found us. You're quite a writer! I felt like I was there in the room with you getting the Remicade.