Hello, everyone. I'm not very good at introductions, but I'll give it a go anyway. I am 32 years old, married, with 2 young daughters ages 4 and 7. I'm a total science geek and I love explaining science to my kids and showing them how the world works by using simplified examples and toys for demonstrations. I'm an avid reader (mostly horror and sci-fi fantasy now) and video game player (mostly RPGs and action-adventures, though I am always up for a good FPS, too). That's a little about me that has nothing to do with Crohn's.
I was diagnosed with Crohn's in the Spring of 2004, but my symptoms started at least a year before that (in hindsight I suspect a few other things that go back further, but it's just guesses). At the time, doctors thought it was my appendix and removed it. I spent the following 6 or 7 weeks recovering from the surgery and then went back to work. Everything seemed to go back to normal.
Flash forward about 9 months and I start feeling the same pain I had before. It didn't take long before the tolerable pain became totally intolerable and being in any kind of sitting position for any length of time made it MUCH worse. I tried to tough it out as long as I could but eventually ended up going on short-term disability. The doctors I saw took a real trial-and-error approach and nothing they prescribed seemed to help and their upbeat statements like "I have good news! It isn't IBS!" only served to frustrate and anger me more. I knew I was really sick and hearing what it wasn't was NOT encouraging to me. Finally, my moronic doctor said in a very care-free way (and even shrugged while he said it) that the pain I was feeling "just may never go away."
My doctor after that was incredibly awesome. I can't say enough good about him, really. With the first doctor I always felt like he didn't believe me, and with this new doctor it really felt like he was on my side and determined to figure out the problem. Under his care, a small bowel follow-through confirmed that I had Crohn's and it appeared to be worst in the ileum (right next to where the appendix was, not so surprisingly).
The summer after I was diagnosed, I moved to Calgary, Alberta and started studying astrophysics at the university there. I had the worst symptoms I'd had up to that point. I bled from mid-November to late February non-stop. Doctors there loaded me up with corticosteroids, but nothing helped. To make matters worse, my whole body ached and moving was a monumental effort. Every step hurt and doctors, thinking it was because of the steroids, dramatically cut BACK on them, making things much, MUCH worse! At one point the muscle weakness and pain became so bad that I actually found myself trapped in a bathroom because I couldn't squeeze the doorknob hard enough to turn it. The sheer RIDICULOUSNESS of the situation actually had me laughing hysterically while I was stuck. But despite all of this, I thankfully managed to do really well in my classes and I've had a high-and-low cycle ever since.
During the Summer months I usually (with a few minor exceptions) feel EXCELLENT, and then in the Fall I start to quickly degrade until I hit rock bottom in late December and start to feel half-decent again in late February or early March. I'm glad to have those high points in the Summer, but in a way it makes this time of year the hardest. I've felt good and now I can feel the disease creeping back in, taking over, and winning. And all the while I know it isn't some outside invader that I need to fight off to feel healthy again, but is in fact my own body waging war against itself. I am my own worst enemy.
At this time of year, Crohn's is like a dark, looming storm on the horizon; and while I know there will be better days ahead, I know I need to get through these bad ones first. And that's where I am now: feeling it set in and looking at another 5 or 6 months of bad days. But that's not the worst of it. The worst is knowing that it isn't just 5 or 6 months and then it's over, but knowing that it's going to happen again and again, and every year my "window of opportunity" where I feel good gets just a bit shorter and there is NO end to this cycle in sight. It's times like these that I try to turn my attention solely on my 2 daughters and not let my own feelings and illness spoil their childhood, because it's easy to start feeling like this cycle is a prison sentence and I don't want them misunderstanding and thinking that I feel THEY are my prison sentence.
Over the past years I've been on different drugs. Pentasa, Entocort, Prednisone, Imuran, to name a few. Most were just ineffective, and the others just made me ill (Imuran injections didn't seem to work and made me puke something fierce) or else they didn't work and effected my mood (when I took entocort I was told I might experience "mood swings". It was more like one mood swing and then it stayed there... It made me feel absolutely ENRAGED. ALL of the time. I like to say it turned me into the Incredible Hulk, and anyone who knew me when I was on it agrees). So now I am on nothing. Every year I've relied on doctors to try to help, it has only made things worse. As bad as the symptoms can be, it seems the medicine only makes things worse (I just end up with symptoms AND side effects, the worst of both worlds).
Anyway, that's it. That's my introduction. It's long. If you made it this far reading then I'm amazed. You deserve a reward of some kind, like a nice shiny apple, or a "I Listened To The Whole Rant" pin to stick on your jacket pocket so everyone who sees you will be instantly impressed.
Until next time...
I was diagnosed with Crohn's in the Spring of 2004, but my symptoms started at least a year before that (in hindsight I suspect a few other things that go back further, but it's just guesses). At the time, doctors thought it was my appendix and removed it. I spent the following 6 or 7 weeks recovering from the surgery and then went back to work. Everything seemed to go back to normal.
Flash forward about 9 months and I start feeling the same pain I had before. It didn't take long before the tolerable pain became totally intolerable and being in any kind of sitting position for any length of time made it MUCH worse. I tried to tough it out as long as I could but eventually ended up going on short-term disability. The doctors I saw took a real trial-and-error approach and nothing they prescribed seemed to help and their upbeat statements like "I have good news! It isn't IBS!" only served to frustrate and anger me more. I knew I was really sick and hearing what it wasn't was NOT encouraging to me. Finally, my moronic doctor said in a very care-free way (and even shrugged while he said it) that the pain I was feeling "just may never go away."
My doctor after that was incredibly awesome. I can't say enough good about him, really. With the first doctor I always felt like he didn't believe me, and with this new doctor it really felt like he was on my side and determined to figure out the problem. Under his care, a small bowel follow-through confirmed that I had Crohn's and it appeared to be worst in the ileum (right next to where the appendix was, not so surprisingly).
The summer after I was diagnosed, I moved to Calgary, Alberta and started studying astrophysics at the university there. I had the worst symptoms I'd had up to that point. I bled from mid-November to late February non-stop. Doctors there loaded me up with corticosteroids, but nothing helped. To make matters worse, my whole body ached and moving was a monumental effort. Every step hurt and doctors, thinking it was because of the steroids, dramatically cut BACK on them, making things much, MUCH worse! At one point the muscle weakness and pain became so bad that I actually found myself trapped in a bathroom because I couldn't squeeze the doorknob hard enough to turn it. The sheer RIDICULOUSNESS of the situation actually had me laughing hysterically while I was stuck. But despite all of this, I thankfully managed to do really well in my classes and I've had a high-and-low cycle ever since.
During the Summer months I usually (with a few minor exceptions) feel EXCELLENT, and then in the Fall I start to quickly degrade until I hit rock bottom in late December and start to feel half-decent again in late February or early March. I'm glad to have those high points in the Summer, but in a way it makes this time of year the hardest. I've felt good and now I can feel the disease creeping back in, taking over, and winning. And all the while I know it isn't some outside invader that I need to fight off to feel healthy again, but is in fact my own body waging war against itself. I am my own worst enemy.
At this time of year, Crohn's is like a dark, looming storm on the horizon; and while I know there will be better days ahead, I know I need to get through these bad ones first. And that's where I am now: feeling it set in and looking at another 5 or 6 months of bad days. But that's not the worst of it. The worst is knowing that it isn't just 5 or 6 months and then it's over, but knowing that it's going to happen again and again, and every year my "window of opportunity" where I feel good gets just a bit shorter and there is NO end to this cycle in sight. It's times like these that I try to turn my attention solely on my 2 daughters and not let my own feelings and illness spoil their childhood, because it's easy to start feeling like this cycle is a prison sentence and I don't want them misunderstanding and thinking that I feel THEY are my prison sentence.
Over the past years I've been on different drugs. Pentasa, Entocort, Prednisone, Imuran, to name a few. Most were just ineffective, and the others just made me ill (Imuran injections didn't seem to work and made me puke something fierce) or else they didn't work and effected my mood (when I took entocort I was told I might experience "mood swings". It was more like one mood swing and then it stayed there... It made me feel absolutely ENRAGED. ALL of the time. I like to say it turned me into the Incredible Hulk, and anyone who knew me when I was on it agrees). So now I am on nothing. Every year I've relied on doctors to try to help, it has only made things worse. As bad as the symptoms can be, it seems the medicine only makes things worse (I just end up with symptoms AND side effects, the worst of both worlds).
Anyway, that's it. That's my introduction. It's long. If you made it this far reading then I'm amazed. You deserve a reward of some kind, like a nice shiny apple, or a "I Listened To The Whole Rant" pin to stick on your jacket pocket so everyone who sees you will be instantly impressed.
Until next time...
