Tuesday, August 14, 2012

Guest Post: Alex's Story #2

What's better than a guest post? A returning blogger! Enjoy - we sure did!

'Marching Ostomate'

I hear my band director yell across the field, ‘REEEEEEESSSSSSSSEETTTT!!” - that means run across the field back to your original starting position. The first thing that goes through my mind after I hear that is I hope my ostomy bag isn’t full. If any of you have ever experienced running with your ostomy bag sloshing …. Well let’s just leave that to your imagination. I am starting on my third year in marching band and Grade 11 or my junior year in High School. The last two years of marching band, Crohn’s hasn’t allowed me to march a whole season. My freshmen year I didn’t have the energy to do all the activity that marching band takes from a person. I would spend two hours at practice and go home and sleep for four. Last year, I was in the hospital for resection surgery during all three weeks of band camp. When I was cleared to practice with my instrument, I broke both heels because of my osteoporosis during one of my first rehearsals. 

This year… I am hopeful! I have gotten through two weeks of band camp which has included two 12 hour days and two 8 hour days. My feet are sore, I am shaking off my sore muscles, ignoring my swollen ostomy, but I am proud and really pleased with myself knowing this year I am fully participating in band camp – for the first time. 

What’s different this year versus the last two? I am not in the hospital – that helps.  One of the things I hear a lot at band camp is “how are you feeling?” My band camp answer this year … “I am here, aren’t I?”  The primary reason is with careful attention to my disease and my diet and a lot of effort and perseverance I am doing what I love doing with my friends.  I hurry back home after a 12 hour day to get hooked up to TPN and lipids so I can get my 10 hour window of nutrition through my PICC line before returning the next morning.  I am careful to take a few extra breaks to rehydrate, rest, and get some extra calories where I can.  I bring a cooler with extra food and the band moms are looking after me making arrangements to meet my semi-vegetarian diet at meal time.  Sounds like a lot of effort and a lot of adjustments to try and live a normal life.  Some might ask, is this worth it?  Duh, of course it is! Friends with common interests, striving to accomplish something, being part of a group, heading towards a goal …   it doesn’t get any better than this. 

Crohn’s does not limit your dreams, you do. I have always known that even with Crohn’s and its complications I could still march. Last year after I broke both heels, I came back and marched in semi-finals at Grand Nationals with my band. It may not have been a perfect show for me, but I have proven to myself once again that no matter what I encounter I can overcome it.


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