Sorry that this is so long.
Around the beginning of this year, I started to have severe, almost constant abdominal pain accompanied by excessive bowel bloody movements, among other things. Long story short, no health care professionals thought I had Crohn's because I have almost no markers for it on blood tests, and have no symptoms of it other than my most recent flare up. I was shuffled around and eventually had a colonoscopy and endoscopy, which revealed an ulcer in my esophagus and problems in my bowel lining. This ulcer is what seemed to throw doctors off about my diagnosis, as it caused blood in my stool and they didn't seem to think that was a common symptom. I was put on 40 mg a day of prednisone, two nexiums a day, and a few weeks later, four asacol a day.
On prednisone, my weight shot from a ripped 145 pounds on a 6'1 frame to as puffy, bloated 170-175. I have always had trouble putting on weight despite my love of physical fitness, so the first few pounds made me ecstatic. Now, I'm tapering and I'm down to 25 mg, and I'll be starting my 20 mg dose tomorrow.
My experience with prednisone has been hellish, for the most part. It was like a wonder drug at first; my symptoms disappeared within a few days of taking it. However, my face looks fat, my stomach is bloated, and all muscle definition I had is gone. When I was at a higher dosage, I experienced crippling soreness to the point where my father clapped me on the shoulder and it took all my willpower not to lash out at him in pain and tell myself to say something calmly because he didn't know. I constantly feel hot, and I'm not sure if that's an actual side effect or the added weight. My body hair seems thicker, but I'm almost totally hairless anyway so this was of negligible consequence. I was having extreme fatigue for no reason; I went to the ACC tournament in Atlanta and nearly feel asleep in the crowded arena twice. My temper is terrible now. I've always had quite an explosive temper, but it used to take a lot to get me to the point where it would show and therefore wasn't a problem. Now I just can't help but get mad at things I can literally tell myself at the time are stupid. I wasn't having depression, but now that I'm tapering I'm experiencing it. I broke up with my girlfriend in October after 16 months together, and I still missed her before the prednisone. Now I'm to the point where I've had to totally cut pretty much all reminders of her out of my life because it makes me feel so much worse and any reminders just bring back memories and more emotions and regret and shame for my actions than I care to experience, nor think is probably good to experience after almost half a year. I haven't experienced the facial acne others do, but the rest of my body is covered with acne, especially my arms. My thighs have dozens of long, purple stretch marks on them, but I've written those off because the only people who'll ever see those will be people in the locker room with me before sporting events, and my sexual partners. I woke up in the middle of the night with agonizing muscle cramps in my calf, and it stayed sore throughout the next day. I now have muscle cramps extremely frequently, mostly in my traps, calfs, and feet.
Tons of people were supportive, like my parents and friends. Others have been rude though. I didn't see one of my friends for a week while he was on a trip, he came back and asked me if I had my wisdom teeth taken out because my cheeks were puffy. He's extremely nice so I know he asked out of genuine concern, but that was truly the last thing I wanted to hear because I've always been insecure about how I look. Another biracial person I know was joking around and asked, "Do all white people have those marks on their arms?" referring to my acne. One of my classmates told me I should kill myself now that I have a life changing disease. He said it jokingly, but wow. He has other issues though; his little brother has much more severe Crohn's than I and he told him "Your disease is just your body being stupid and attacking itself." I'm a basketball player, and people resented me sitting out hard conditioning practices when my symptoms would flare and missing games because I couldn't make long bus rides without having to go to the bathroom. When I finally got back to playing for the last few games, my minutes were cut significantly and I went from starting to riding the bench most of the game. I think my coach thought I was just being a wimp.
I am thankful for the supportive people though. People I thought couldn't care less about me showed their support and seemed worried about me. Just little gestures like sending texts wondering where I was when I was out of school or giving me hugs when I got back made the whole thing seem a lot easier. My pastor was great. After my colonoscopy word got back to my ex I had been "in the hospital" which she took as a several day, major ordeal. We had been talking a bit, and despite me breaking up with her and admittedly treating her quite badly, she was still really worried and showed she still cared somehow. My parents, for the most part, were great. Sometimes they didn't understand my fatigue and that was frustrating, but other than that, they let me know they were proud of how I handled it.
Dealing with how my parents took it has sucked. When I came to after the colonosopy, they were giving my parents the news. My mom was crying and upset, and I just kind of mumbled and groaned not to cry. She started laughing through the tears. My dad didn't get emotional then, but he did get emotional later over being worried about me. This didn't bother me, it actually made me feel good to know he cared that much, but it was bizarre because he's not a super emotional guy.
Overall, my experience with Crohn's has made me a better person. When i said above I treated my ex badly, I treated her really badly. I was under a lot of stress and was scared of letting her know how much I cared about herb because I was afraid if she didn't she could hurt me, so i took the stress out on her and then added some extra maliciousness in there. She still treated me great until the very day I broke it off with her. I've always had a problem with being disrespectful to my mother. her and I get along great most of the time, but when we don't, I treated her with no respect. I have a very sharp tongue and I'm very quick witted, so that's a big problem. However, being diagnosed has made me realize a few big things. I realize now that there's no point in holding stress in. Without going into the details of what was going on, it was enough to really bother most people. I, however, didn't do the smart thing and talk to the many supportive people around me like parents, girlfriend, friends, etc., I shut it inside. I realize now I'm not built for that. i'm not the type of person who can lone wolf it, and I can't be afraid to talk about something and get it off my chest for fear of being perceived as a wimp. It turns me into a mean, spiteful person, and I'm still ashamed of my actions. I realize there's no point in playing games with people's heads or being hateful to them, no matter how you feel at the time. I had a girl I truly cared deeply about and loved with all my heart, but I still pulled that immaturity. I have a great mom who does everything she can for me and stays up at night worrying about me, and took the news of the diagnosis harder than I did to be honest, yet as soon as I was mad I was acting like an immature fool. I don't really know how to explain the feeling, it's just that now I know life can change in an instant. I've always been extremely healthy, then I get blindsided with a diagnosis for a lifelong disease? It puts everything in perspective. I guess what I'm trying to say is that life can change in an instant, not letting the people you care about know just how much could end up being a grave mistake one of these days. It's probably too late for me and the girl (though I'm still holding out hope), but I can take this lesson I've learned with me throughout the rest of my life, and I've been trying to be more respectful to my mother. (This is NOT easy on prednisone. :ylol: ) I truly can't explain exactly how I feel differently, it's just like my outlook on what's important and how stable everything is has changed. I've also taken time to try to improve myself. I view the Crohn's like motivation. I heard a saying once: I won't allow someone with twice my genetics and half my motivation to beat me. This was in the context of a bodybuilding competition, which I personally am not into, but I loved the quote. Why should I allow this to hold me back? I may miss school for a flare up. But I'm guy with high goals in life, i better study harder since I'm missing instructional time. I may miss a workout or a practice, so I better run harder or lift harder when I get back. I don't want to fall into self pity that others may have it easier than me, no matter how tempting it may be. So to that end, I've gotten into lifting weights again (I kept having to stop off and on for about a year because of various injuries and illnesses, most of which were unrelated to GI problems), and I took up guitar. I may join my school cross country team and try to train for a half marathon next year, depending on my remission status. I now have a dream of one day opening a nonprofit to offer support to young Crohn's patients, because it made me sad to see the little kids in the waiting room going in and thinking about them having to be on Remicaid or Humira or similarly harsh drugs.
I don't really know why I put all this in here, mostly just to get it out I think, because right now I'm not feeling too great with the prednisone taper and writing things down always makes me feel better. So, yeah, that's my Crohn's story.
Around the beginning of this year, I started to have severe, almost constant abdominal pain accompanied by excessive bowel bloody movements, among other things. Long story short, no health care professionals thought I had Crohn's because I have almost no markers for it on blood tests, and have no symptoms of it other than my most recent flare up. I was shuffled around and eventually had a colonoscopy and endoscopy, which revealed an ulcer in my esophagus and problems in my bowel lining. This ulcer is what seemed to throw doctors off about my diagnosis, as it caused blood in my stool and they didn't seem to think that was a common symptom. I was put on 40 mg a day of prednisone, two nexiums a day, and a few weeks later, four asacol a day.
On prednisone, my weight shot from a ripped 145 pounds on a 6'1 frame to as puffy, bloated 170-175. I have always had trouble putting on weight despite my love of physical fitness, so the first few pounds made me ecstatic. Now, I'm tapering and I'm down to 25 mg, and I'll be starting my 20 mg dose tomorrow.
My experience with prednisone has been hellish, for the most part. It was like a wonder drug at first; my symptoms disappeared within a few days of taking it. However, my face looks fat, my stomach is bloated, and all muscle definition I had is gone. When I was at a higher dosage, I experienced crippling soreness to the point where my father clapped me on the shoulder and it took all my willpower not to lash out at him in pain and tell myself to say something calmly because he didn't know. I constantly feel hot, and I'm not sure if that's an actual side effect or the added weight. My body hair seems thicker, but I'm almost totally hairless anyway so this was of negligible consequence. I was having extreme fatigue for no reason; I went to the ACC tournament in Atlanta and nearly feel asleep in the crowded arena twice. My temper is terrible now. I've always had quite an explosive temper, but it used to take a lot to get me to the point where it would show and therefore wasn't a problem. Now I just can't help but get mad at things I can literally tell myself at the time are stupid. I wasn't having depression, but now that I'm tapering I'm experiencing it. I broke up with my girlfriend in October after 16 months together, and I still missed her before the prednisone. Now I'm to the point where I've had to totally cut pretty much all reminders of her out of my life because it makes me feel so much worse and any reminders just bring back memories and more emotions and regret and shame for my actions than I care to experience, nor think is probably good to experience after almost half a year. I haven't experienced the facial acne others do, but the rest of my body is covered with acne, especially my arms. My thighs have dozens of long, purple stretch marks on them, but I've written those off because the only people who'll ever see those will be people in the locker room with me before sporting events, and my sexual partners. I woke up in the middle of the night with agonizing muscle cramps in my calf, and it stayed sore throughout the next day. I now have muscle cramps extremely frequently, mostly in my traps, calfs, and feet.
Tons of people were supportive, like my parents and friends. Others have been rude though. I didn't see one of my friends for a week while he was on a trip, he came back and asked me if I had my wisdom teeth taken out because my cheeks were puffy. He's extremely nice so I know he asked out of genuine concern, but that was truly the last thing I wanted to hear because I've always been insecure about how I look. Another biracial person I know was joking around and asked, "Do all white people have those marks on their arms?" referring to my acne. One of my classmates told me I should kill myself now that I have a life changing disease. He said it jokingly, but wow. He has other issues though; his little brother has much more severe Crohn's than I and he told him "Your disease is just your body being stupid and attacking itself." I'm a basketball player, and people resented me sitting out hard conditioning practices when my symptoms would flare and missing games because I couldn't make long bus rides without having to go to the bathroom. When I finally got back to playing for the last few games, my minutes were cut significantly and I went from starting to riding the bench most of the game. I think my coach thought I was just being a wimp.
I am thankful for the supportive people though. People I thought couldn't care less about me showed their support and seemed worried about me. Just little gestures like sending texts wondering where I was when I was out of school or giving me hugs when I got back made the whole thing seem a lot easier. My pastor was great. After my colonoscopy word got back to my ex I had been "in the hospital" which she took as a several day, major ordeal. We had been talking a bit, and despite me breaking up with her and admittedly treating her quite badly, she was still really worried and showed she still cared somehow. My parents, for the most part, were great. Sometimes they didn't understand my fatigue and that was frustrating, but other than that, they let me know they were proud of how I handled it.
Dealing with how my parents took it has sucked. When I came to after the colonosopy, they were giving my parents the news. My mom was crying and upset, and I just kind of mumbled and groaned not to cry. She started laughing through the tears. My dad didn't get emotional then, but he did get emotional later over being worried about me. This didn't bother me, it actually made me feel good to know he cared that much, but it was bizarre because he's not a super emotional guy.
Overall, my experience with Crohn's has made me a better person. When i said above I treated my ex badly, I treated her really badly. I was under a lot of stress and was scared of letting her know how much I cared about herb because I was afraid if she didn't she could hurt me, so i took the stress out on her and then added some extra maliciousness in there. She still treated me great until the very day I broke it off with her. I've always had a problem with being disrespectful to my mother. her and I get along great most of the time, but when we don't, I treated her with no respect. I have a very sharp tongue and I'm very quick witted, so that's a big problem. However, being diagnosed has made me realize a few big things. I realize now that there's no point in holding stress in. Without going into the details of what was going on, it was enough to really bother most people. I, however, didn't do the smart thing and talk to the many supportive people around me like parents, girlfriend, friends, etc., I shut it inside. I realize now I'm not built for that. i'm not the type of person who can lone wolf it, and I can't be afraid to talk about something and get it off my chest for fear of being perceived as a wimp. It turns me into a mean, spiteful person, and I'm still ashamed of my actions. I realize there's no point in playing games with people's heads or being hateful to them, no matter how you feel at the time. I had a girl I truly cared deeply about and loved with all my heart, but I still pulled that immaturity. I have a great mom who does everything she can for me and stays up at night worrying about me, and took the news of the diagnosis harder than I did to be honest, yet as soon as I was mad I was acting like an immature fool. I don't really know how to explain the feeling, it's just that now I know life can change in an instant. I've always been extremely healthy, then I get blindsided with a diagnosis for a lifelong disease? It puts everything in perspective. I guess what I'm trying to say is that life can change in an instant, not letting the people you care about know just how much could end up being a grave mistake one of these days. It's probably too late for me and the girl (though I'm still holding out hope), but I can take this lesson I've learned with me throughout the rest of my life, and I've been trying to be more respectful to my mother. (This is NOT easy on prednisone. :ylol: ) I truly can't explain exactly how I feel differently, it's just like my outlook on what's important and how stable everything is has changed. I've also taken time to try to improve myself. I view the Crohn's like motivation. I heard a saying once: I won't allow someone with twice my genetics and half my motivation to beat me. This was in the context of a bodybuilding competition, which I personally am not into, but I loved the quote. Why should I allow this to hold me back? I may miss school for a flare up. But I'm guy with high goals in life, i better study harder since I'm missing instructional time. I may miss a workout or a practice, so I better run harder or lift harder when I get back. I don't want to fall into self pity that others may have it easier than me, no matter how tempting it may be. So to that end, I've gotten into lifting weights again (I kept having to stop off and on for about a year because of various injuries and illnesses, most of which were unrelated to GI problems), and I took up guitar. I may join my school cross country team and try to train for a half marathon next year, depending on my remission status. I now have a dream of one day opening a nonprofit to offer support to young Crohn's patients, because it made me sad to see the little kids in the waiting room going in and thinking about them having to be on Remicaid or Humira or similarly harsh drugs.
I don't really know why I put all this in here, mostly just to get it out I think, because right now I'm not feeling too great with the prednisone taper and writing things down always makes me feel better. So, yeah, that's my Crohn's story.
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