Days

The past few months have been filled with 'days.'  I'm sure you've had them - days that stick in your mind and you can't shake.  Well, Wednesday, April 9, 2011 was one of those days.  A day I had to come to terms with the fact that my Crohn's Disease ridden bowel can't sustain me over the long haul.

I was diagnosed with Crohn's Disease when I was 12 years old - 1986, but I had it a few years before that. My family just didn't know what it was or have the health insurance to really dig into it.  (Dad went back to school for 3 years so we didn't have insurance, and for some reason my parents didn't apply for Medicaid.)  So in 1986 when we had insurance and my health was deteriorated to a point where it could not be ignored, I was sick - my red blood cell count was low (like 4, when it was supposed to be 14).  I hadn't grown in a long time (I was 4'9" in 2nd grade and 4'11" in 9th grade).  I had become really skinny after wearing 'husky' as a little kid.  It was noticeable decline.

Then there was the social changes too.  I didn't leave the house to play outside unless it was for certain activities like music lessons or sports practice.  It just wasn't worth getting caught away from a bathroom.  Traveling long distances was difficult because I had to use the bathroom so often.  To remedy this, we ended up buying a conversion van and putting a toilet in it.  Nice huh?!

Anyway, I had a good life.  I was active in choir, orchestra, and soccer throughout high school.  I did well academically.  I was a leader at church, which gave me lots of opportunities through my connections with adults.  There was really little I could complain about other than I had to use the bathroom way too often.  It physically hurt, was socially awkward, and just a pain.

College was great for the most part.  I continued playing soccer, traveled to China for a semester, did okay academically because I found out that late night conversations could teach me more than a book sometimes, and had a good time.  I even met my wife one summer and we got married at the end of school.  But my senior year was difficult health wise.  I had problems and just before graduation was hospitalized for the first time with a stricture.  I just got out in time to walk across the stage and receive my diploma, but I looked terrible because I had been on prednisone.  My face was chunky and round.  I was heavy and full of acne.  It wasn't the best of times health wise.

For the next three years, it just kept getting worse.  My bowels were blocked, strictures formed, and well I could go on, but that would be too much information as they say.  Sufficed to say, it was a pain in more ways than a few.   Finally, it was decided that I needed to have surgery.

That began a journey that has led to this point......I am meeting with physicians from UPMC regarding a small bowel transplant.  I'll share more along the way, but right now I'm at UPMC trying to figure out the next steps along the way.