My story:
WARNING: THIS MAY BE A BIT BORING AT TIMES, BUT HOPEFULLY SOMEONE CAN RELATE AND I KIND OF JUST FELT MOTIVATED TO WRITE MY STORY DOWN.
I lived a perfectly healthy life up until I was about 10 and half years old, then something changed overnight. I started experiencing joint pains and became almost unable to play sports like I used to, I felt like an 80 year old man at times. I remember my dad brought me to the doctors with him to get a blood test and I remember recalling to him, “Man, I’m glad I don’t have to do that again for a while”. Little did I know, this would only be the start of a long journey that ultimately defined me into the person writing this post today.
After kind of just waiting this situation out for a few months, my family started noticing that I just wasn’t a normal 11 year old, I was always tired, had bags under my eyes, had random pains so we went for another blood test that showed that I was anemic. I visited a doctor in Albany that prescribed me, iron tablets to take everyday, and told me the problem was probably caused by stress (my father passed during the year). Captain hindsight, I had these problems before the death and we kind of just noticed them more after, but I accepted the doctor’s reasoning, took the pills for a few months, that turned into about 3 years of doctor’s visits not understanding why my iron levels just stayed low. My mom is a great woman, but she is very into the holistic approach and thinks that almost everything bad that happens to ones body is caused by stress, this did not help getting a speedy diagnosis but I continue. Eventually, I received a stool sample test that showed signs of blood in the sample. This was the first time I heard of Crohn’s disease, but we had to have further tests to make sure it wasn’t anything like Celiac Disease, Rheumatoid arthritis, lymes disease etc. but after my first Colonoscopy (October 2008, when I was a freshman in high school), it was confirmed, I had Crohn’s disease. After this colonoscopy, I immediately started developing the signs of crohn’s disease as if this first colonoscopy triggered the disease to come out in full force. I started taking Asacol, a mild drug that is supposed to help patients with less severe illnesses, this did not really work but I stayed on it for a while.
Gradually, my sympotoms got worse and I had to get on new, more aggressive medications, the first of these medications was Remicade. This involved going to the hospital every month, for an infusion, but this drug, although it may have had a placebo affect did not help me. At this point, I was probably using the bathroom something like 6-7 times a day. Eventually, we decided that this drug would not be working for me and that we should try 6MP Methotrexate, but in order to see if this drug was working, I had to take it for something like 6 months. For the time being, they had to put me on prednisone 40mg everyday. I had heard of the effects of this drug ever since I was little, and I was frightened. My dad used to take it, and every time they weaned hi m down to a certain level, he would get very sick but it is something that it seemed like I had to do. Right away, this drug had immediate results, I started feeling better, my appetite went through the roof, I did very well in school, and surprising, athletically (for being a 5 ft. tall kid, weighing in at like 100 pounds competing against fully grown kids) I did very well and even won the MVP award for my soccer team, maybe the team was filled with very un-athletic kids, but I’ll take it. We knew that I could not stay on Prednisone forever so we started weaning me off of it, but every time I got to somewhere around 30-25mg, my body would get immediately worse and I would have to use the bathroom an absurd number of times. It got to a point where I would have to use the bathroom 20 times a day and I had almost no control of my bowels. I would go to school, but the only thing I would think of was timing when I ate and when I would go to the bathroom and it became scary. It seemed like 6mp was not working so we tried one other drug, Humira, but at that point, I was so sick and malnourished that after sitting down and standing up, I would black out for a few seconds then eventually regain my sight. I was down to about 75 pounds, my growth was stunted, and I was using the bathroom 20 times a day. People and teachers kept commenting that I was so skinny and that I looked sick and frail but I didn’t want people to feel bad for me, so I really didn’t like letting anyone IN to know really was going on. This is something I really wouldn’t be “better” at until years later. I saw an expert from Harvard med, Dr. Bousvarous, and he told my mom and I that I basically had one option left, surgery. My mom did not buy this and put me on this holistic, Makers diet. This diet did not go well and my body more or less just wasn’t functioning. The night I got off the diet, I literally stayed on the toilet all night and that’s when I 100% new that I needed and wanted the surgery. We saw my doctor a day or two later, and he told me that after talking to Dr. Bousvarous, he recommend that I have surgery. My mom immediately started crying, but I knew that it had to be done and we scheduled it for January 26th, 2010. The surgery went well and I had a follow up with Dr. Bousvarous and he told me that he didn’t want to tell me earlier, but he wasn’t sure if I would make it for another month.
I immediately started gaining weight and feeling better after my surgery. I had my whole colon removed, but I maintained the rectum in case I have the reversal one day. From that day onward, I did not miss a single class, and won a perfect attendance award during my senior year of high school as well as I went undefeated during my senior year playing tennis and became one of the top players in the capital district.
I currently live with an ileostomy, I don’t think I’ve had any bad symptoms since. For a long time I was very fearful to show people it and when I would go swimming, I would wear my shorts up high, but after meeting some people that were very interested in my ileostomy, I developed a lot more confidence and I tried to let it not control my life or how I feel about myself, although this certainly is not always the case. I got to do amazing things like study abroad in Barcelona for four and a half months and continue to grow and gain weight. I currently am 5 foot 10, 170 pounds (I may have to start losing some weight haha). I have to admit, when I went to college, I became a heavy drinker, I tried to live with the philosophy that I can do anything like everyone else, and I still like to go out because I love meeting new people and I tend to have great experiences but after going out now, I come back with the shakes for days, I do not think great, I develop numbness in my hands and feet, and I hate the days after I go out hard for a few nights. It is something that I have been working on changing in my life, especially since I am working now and have been pretty busy, but it is something I will have to come to terms with and eventually realize what is really important to me in this world.
Lastly, I did not really mention my family, and friends during this post, but that’s because there are no real words to describe what them being there for me really did. I hope someone can maybe relate to at least a small part of this.
WARNING: THIS MAY BE A BIT BORING AT TIMES, BUT HOPEFULLY SOMEONE CAN RELATE AND I KIND OF JUST FELT MOTIVATED TO WRITE MY STORY DOWN.
I lived a perfectly healthy life up until I was about 10 and half years old, then something changed overnight. I started experiencing joint pains and became almost unable to play sports like I used to, I felt like an 80 year old man at times. I remember my dad brought me to the doctors with him to get a blood test and I remember recalling to him, “Man, I’m glad I don’t have to do that again for a while”. Little did I know, this would only be the start of a long journey that ultimately defined me into the person writing this post today.
After kind of just waiting this situation out for a few months, my family started noticing that I just wasn’t a normal 11 year old, I was always tired, had bags under my eyes, had random pains so we went for another blood test that showed that I was anemic. I visited a doctor in Albany that prescribed me, iron tablets to take everyday, and told me the problem was probably caused by stress (my father passed during the year). Captain hindsight, I had these problems before the death and we kind of just noticed them more after, but I accepted the doctor’s reasoning, took the pills for a few months, that turned into about 3 years of doctor’s visits not understanding why my iron levels just stayed low. My mom is a great woman, but she is very into the holistic approach and thinks that almost everything bad that happens to ones body is caused by stress, this did not help getting a speedy diagnosis but I continue. Eventually, I received a stool sample test that showed signs of blood in the sample. This was the first time I heard of Crohn’s disease, but we had to have further tests to make sure it wasn’t anything like Celiac Disease, Rheumatoid arthritis, lymes disease etc. but after my first Colonoscopy (October 2008, when I was a freshman in high school), it was confirmed, I had Crohn’s disease. After this colonoscopy, I immediately started developing the signs of crohn’s disease as if this first colonoscopy triggered the disease to come out in full force. I started taking Asacol, a mild drug that is supposed to help patients with less severe illnesses, this did not really work but I stayed on it for a while.
Gradually, my sympotoms got worse and I had to get on new, more aggressive medications, the first of these medications was Remicade. This involved going to the hospital every month, for an infusion, but this drug, although it may have had a placebo affect did not help me. At this point, I was probably using the bathroom something like 6-7 times a day. Eventually, we decided that this drug would not be working for me and that we should try 6MP Methotrexate, but in order to see if this drug was working, I had to take it for something like 6 months. For the time being, they had to put me on prednisone 40mg everyday. I had heard of the effects of this drug ever since I was little, and I was frightened. My dad used to take it, and every time they weaned hi m down to a certain level, he would get very sick but it is something that it seemed like I had to do. Right away, this drug had immediate results, I started feeling better, my appetite went through the roof, I did very well in school, and surprising, athletically (for being a 5 ft. tall kid, weighing in at like 100 pounds competing against fully grown kids) I did very well and even won the MVP award for my soccer team, maybe the team was filled with very un-athletic kids, but I’ll take it. We knew that I could not stay on Prednisone forever so we started weaning me off of it, but every time I got to somewhere around 30-25mg, my body would get immediately worse and I would have to use the bathroom an absurd number of times. It got to a point where I would have to use the bathroom 20 times a day and I had almost no control of my bowels. I would go to school, but the only thing I would think of was timing when I ate and when I would go to the bathroom and it became scary. It seemed like 6mp was not working so we tried one other drug, Humira, but at that point, I was so sick and malnourished that after sitting down and standing up, I would black out for a few seconds then eventually regain my sight. I was down to about 75 pounds, my growth was stunted, and I was using the bathroom 20 times a day. People and teachers kept commenting that I was so skinny and that I looked sick and frail but I didn’t want people to feel bad for me, so I really didn’t like letting anyone IN to know really was going on. This is something I really wouldn’t be “better” at until years later. I saw an expert from Harvard med, Dr. Bousvarous, and he told my mom and I that I basically had one option left, surgery. My mom did not buy this and put me on this holistic, Makers diet. This diet did not go well and my body more or less just wasn’t functioning. The night I got off the diet, I literally stayed on the toilet all night and that’s when I 100% new that I needed and wanted the surgery. We saw my doctor a day or two later, and he told me that after talking to Dr. Bousvarous, he recommend that I have surgery. My mom immediately started crying, but I knew that it had to be done and we scheduled it for January 26th, 2010. The surgery went well and I had a follow up with Dr. Bousvarous and he told me that he didn’t want to tell me earlier, but he wasn’t sure if I would make it for another month.
I immediately started gaining weight and feeling better after my surgery. I had my whole colon removed, but I maintained the rectum in case I have the reversal one day. From that day onward, I did not miss a single class, and won a perfect attendance award during my senior year of high school as well as I went undefeated during my senior year playing tennis and became one of the top players in the capital district.
I currently live with an ileostomy, I don’t think I’ve had any bad symptoms since. For a long time I was very fearful to show people it and when I would go swimming, I would wear my shorts up high, but after meeting some people that were very interested in my ileostomy, I developed a lot more confidence and I tried to let it not control my life or how I feel about myself, although this certainly is not always the case. I got to do amazing things like study abroad in Barcelona for four and a half months and continue to grow and gain weight. I currently am 5 foot 10, 170 pounds (I may have to start losing some weight haha). I have to admit, when I went to college, I became a heavy drinker, I tried to live with the philosophy that I can do anything like everyone else, and I still like to go out because I love meeting new people and I tend to have great experiences but after going out now, I come back with the shakes for days, I do not think great, I develop numbness in my hands and feet, and I hate the days after I go out hard for a few nights. It is something that I have been working on changing in my life, especially since I am working now and have been pretty busy, but it is something I will have to come to terms with and eventually realize what is really important to me in this world.
Lastly, I did not really mention my family, and friends during this post, but that’s because there are no real words to describe what them being there for me really did. I hope someone can maybe relate to at least a small part of this.
