I
identicaltwin_NYC
Guest
Let me start by saying this isn't meant to be a pity tale. I'm 30 and have overcome a lot of obstacles and have never been ruled by my Crohn' disease. I'm writing my story hoping someone may have a uggestion that I have not tried...Here's my story.
I started presenting with severe internal bleeding at 5 yrs of age and diagnosed at the age of 7. Early on in my diagnosis I was treated with heavy doses of prednisone, along with azulfadine, and by my teenage years I was told I went into remission. The massive internal bleeding had stopped, but despite leading an ultra-conservative lifestyle, the other debilitating symptoms began to present themselves again - joint pains, cramps, weight loss, etc. The arthritic-like pains being the hardest to deal with.
Since college my doctors have tried what seems like every medicinal therapy on me - azulfadine, Remicade, Enbrel, indomethacin, methotrexate, Asacol, Pentasa, and the list goes on. In 2003 I had a partial collectomy after doctors discovered several severe strictures. Again, I felt temporary relief before everything came back.
Three years later and I'm at my wit's end. I'm too humiliated with the uncontrollable (and apparently unexplainably large) amounts of gas to date women and settle down. I've gone frome eating nearly 4 solid meals a day to maybe 1. Though I eat MUCH less, I've put on some weight. I'm fairly certain I have severe strictures again, because it feels like NOTHING moves through. I'm extremely thin and yet I have a distended belly that has continued to worsen...I believe as a result of the bowels not moving through. My joint pains are so damaging I can't sleep for any sufficient amount of time. These same pains found in my knees, back, ankles and wrists prevent me from standing or sitting in one place for more than a minute (Movies are a thing of the past). I've switched jobs 4 times since 2000 and fear I'm not too far away from collecting permanent disability. I NEVER want to be that guy, but I'm not sure what I can do to prevent that from being my fate.
I apologize for the long tale and thank you if you're still reading this tale. Living nearly my entire life in pain, I've learned to manage both physically and mentally and keep up a strong front for all those around me. I am writing this letter, because my strong front is fading. As a result of my body's physical deterioration, I'm finding it incredibly difficult to hold onto that last bit of hope of ever achieving a relative sense of normalcy. That last piece of hope that has motivated me for the last 25 years.
Again thank you for your time and consideration. If nothing else, I appreciate your eyes and ears and for allowing me to finally tell the true story behind my 'smile'.
I started presenting with severe internal bleeding at 5 yrs of age and diagnosed at the age of 7. Early on in my diagnosis I was treated with heavy doses of prednisone, along with azulfadine, and by my teenage years I was told I went into remission. The massive internal bleeding had stopped, but despite leading an ultra-conservative lifestyle, the other debilitating symptoms began to present themselves again - joint pains, cramps, weight loss, etc. The arthritic-like pains being the hardest to deal with.
Since college my doctors have tried what seems like every medicinal therapy on me - azulfadine, Remicade, Enbrel, indomethacin, methotrexate, Asacol, Pentasa, and the list goes on. In 2003 I had a partial collectomy after doctors discovered several severe strictures. Again, I felt temporary relief before everything came back.
Three years later and I'm at my wit's end. I'm too humiliated with the uncontrollable (and apparently unexplainably large) amounts of gas to date women and settle down. I've gone frome eating nearly 4 solid meals a day to maybe 1. Though I eat MUCH less, I've put on some weight. I'm fairly certain I have severe strictures again, because it feels like NOTHING moves through. I'm extremely thin and yet I have a distended belly that has continued to worsen...I believe as a result of the bowels not moving through. My joint pains are so damaging I can't sleep for any sufficient amount of time. These same pains found in my knees, back, ankles and wrists prevent me from standing or sitting in one place for more than a minute (Movies are a thing of the past). I've switched jobs 4 times since 2000 and fear I'm not too far away from collecting permanent disability. I NEVER want to be that guy, but I'm not sure what I can do to prevent that from being my fate.
I apologize for the long tale and thank you if you're still reading this tale. Living nearly my entire life in pain, I've learned to manage both physically and mentally and keep up a strong front for all those around me. I am writing this letter, because my strong front is fading. As a result of my body's physical deterioration, I'm finding it incredibly difficult to hold onto that last bit of hope of ever achieving a relative sense of normalcy. That last piece of hope that has motivated me for the last 25 years.
Again thank you for your time and consideration. If nothing else, I appreciate your eyes and ears and for allowing me to finally tell the true story behind my 'smile'.
