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since 4-6-05.

I'll warn you...it's pretty long.

    I was diagnosed with Crohn's disease in September, 2000.  The story, however, really starts when I was just an infant.  My parents had noticed that my stools were loose in my diapers, but nothing really ever become of it.  I got very bad rashes on my legs on anus, which is also a sign of Crohn's.  My weight gain was normal, so the pediatrician thought everything was fairly okay. 

    In March of 2000, when I was just turning 10, I began to have more frequent diarrhea.  It was not necessarily incredibly often, but more so than normal.  In 1-2 months I lost 10 pounds.  I got dry skin on my legs that was very itchy.  My pediatrician was out of the country for an extended period of time and my mother, being an excellent nurse and being good at research, thought it might be Crohn's disease.  I'd never heard of this.  I thought it was cancer or something else.  I was completely lost.

    Eventually, we found a gastrointestinal (GI) doctor in Roanoke: Dr. Hart.  I was scheduled for a colonoscopy and endoscopy for September 1, 2000 (I remember the exact date).  These procedures are exploratory of the GI tract; the colonoscopy goes up from the rectum and the endoscopy goes down from the mouth/esophagus.  A fiber optic cable with a camera attached is passed through so the doctor can determine what the problem is.

    I remember specifically checking in at the hospital because of one thing that the nurse said.  "Will this be your first colonoscopy today?"  It didn't mean much to me then, but five years and at least a dozen colonoscopies later, it strikes me as foreshadowing.

    In the coming months after I was diagnosed, I was put on a barrage of pills, including Pentasa, 6MP (one type of pill form of Imuran), Flagyl, Cipro, and multivitamins.  This was unfortunate for me because I could not swallow pills.  I would crush the pills and put them in apple sauce, or try sprinkling them into jello.  I would try different flavor drinks, using a straw, honey on the tongue...everything under the sun.  Taking pills was not an easy task for me, and at any point it was probably not clear exactly how much of the medicine was getting into me. 

    In December, 2000, I went on school trip and vomited on a Burger King counter.  Have it your way, I guess.  I was very dizzy and my joints had been aching for a few weeks.  I was admitted to the hospital in early December, and was given an infusion of Remicade, a drug first used for arthritis patients and now being using for Crohn's.  I was the first pediatric patient in the Roanoke Valley to use this drug.  It gave me relief for about a week but then wore off.  I was then admitted again as an outpatient at the end of December for another Remicade infusion.  These infusions need to be given every few weeks, and in my particular case this interval was about three weeks.  During this infusion I got red and had some trouble breathing, and didn't get relief for as long as the first infusion.

    In January, 2001, I received my third Remicade infusion after having a flare up of my Crohn's.  I reacted poorly to this -- becoming very red and having significant trouble breathing.  I did not get relief and I obviously did not use Remicade again, at least for awhile.  In late February, 2001, I flared up once again.  I was admitted to the hospital and stayed there for a little over a week, including over my birthday.  My doctor could not control my GI bleeding with me eating, so the decision was made to start total paraenteral nutrition (TPN).  This means that I was getting all of my nutrition through an IV, and I was not eating or drinking anything with protein or fat in it.  In the beginning, I had to run the TPN for 16 hours a day, so I had to bring it -- an IV bag and a portable pump in a backpack -- to school with me.  After some time I was able to wean down to 12 hours a night, so I could run it while I slept.

    In order to sustain the heavy load of fluid going through my veins, I had a port implanted surgically on the left side of my chest.  For several months I did this process over and over again: every night at six o' clock I would inject medicine and multivitamins in an IV bag with 2500ml of fluid (1 cup is 250ml), hook it up to a pump, and connect it to my port, located on my chest.  I would have to get up every hour at night, pretty much exactly at the same minute of the hour, to pee. I tried to get my infusions down to 10 and even 8 hours a night, but I started peeing in my bed because it was so much going in too fast, and I guess I was sort of sleep-walking.  That plan fell through.

    Some where in the spring of 2001 I developed clots in the veins in my chest.  I had noticed in the mornings that my veins looked a lot bigger than normal, and as soon as this was verified with an ultrasound, the port was taken out.  I had a new one placed later in the month, and the TPN was continued.  Over the course of a little less than two years, I would not eat to rest my bowels.  Every so often I would try reintroducing small, light-protein, low-fat foods, but in a few days I would start hemorrhaging and flaring again.  Once again, in August, 2001, I started the school year with an IV pump hung onto my back. 

    For approximately the next year I was on TPN almost consistently.  I was maintained by steroids, Imuran (an immunosuppressant), and Pentasa (anti-inflammatory).  In June, 2002, I was hospitalized for a flare and given a blood transfusion.  I started NG-tube feedings to see if this would help any better.

      Three days after getting out of the hospital, I went to Chicago to see if I was eligible for a study that was going on using stem cell transplants to help Crohn's disease.  I was approved for the study, but because I was still considered a minor (under 16), it would have to be done at the Children's Hospital there.  This meant new FDA approval and credentialing for two doctors, which was supposed to take just a few weeks.  Supposed to.

    I got more sick over the next couple of months, and in December, 2002, after running out of ideas and nearly turning to surgery, my parents and I drove to John's Hopkins University Hospital where I was admitted for a little less than three weeks.  I had an attempted surgery to remove a foot long stricture that ended up being nothing, and for the first time in my life, swallowed a pill successfully.  You'll be happy to note that I now take pills exceedingly well.

    At John's Hopkins I was put on a drug called FK-506, an immunosuppressant originally used in organ transplants to prevent the body from rejecting the new organ.  I stayed on this for 7 months with apparently little success.  (Pretty much every drug but steroids has done little, if any, for me.)  In May 2003, I had a kidney stone, which...if you've ever had one you know why this is big deal.  They HURT. 

    For the next couple of months I was off an on okay and bad.  Any Crohn's patient would know what this means.  You never completely feel okay, you never feel completely normal.  You always have some type of cramp, muscle ache, headache, fatigue, or something else.  I honestly don't remember what it is to feel "good".  I'm lucky if I wake up with some small cramps.

    In July, 2003, my mother and I left for Chicago for me to be a participant in a trial using stem cell transplant to treat Crohn's disease.  This, after the doctors and officials there said that they were ready to go in a matter of days.  They simply needed to finalized some paperwork.  We were told that I had been approved in July (and last year), only to be told in early September that the FDA never actually approved squat.  Approval was eventually given in late September for me to proceed at the Children's Hospital there.  The doctors did surgery to implant a thicker central catheter and did a colonoscopy. 

   In October, 2003, after waiting almost three months in Chicago, going through two central catheters and a colonoscopy less than a week before, thousands of dollars, and a waste of time, the doctors there said I was "not sick" enough, or too healthy to participate in the study.

    I came with my parents and drove through Eastern Kentucky University, where my brother, also recently diagnosed with Crohn's at the time, was going to school.  Going from one hospital to another, we stayed with him while he was admitted in the hospital for about a week.  It's fair to say that he was doing much worse at his time of diagnosis than I was at mine. 

    I got back to Roanoke on October 17, 2003, just in time for my school's homecoming football game.  I was on the brink of stable and unstable, held in shape with steroids and chemicals never meant to be inside your body.  A month after getting back to school, I was doing okay, but still shaky.  One day at school I was trying to get to the bathroom but could not make it and accidentally made in my pants. 

    Over the next year and a half, I was kept stable pretty much by steroids, backed up by a host of other medicines.  Every time the doctor would try to slowly wean the steroids, I would flare and have to be hospitalized.  Sometimes on my birthday.  Sometimes on my father's.  Often missing weeks of school on end.  I became steroid dependent and at the same time steroid resistant.  I could not come off of them, but then when I tried to go back up in dosage, I would need a higher dosage each time.     

   Steroids don't just make you look pudgy.  Frankly, that's the least of my concerns.  They leach the calcium from your bones, stunt your growth (especially in a teenager going through puberty), and, in long term use like mine, have been shown to cause cancer and kidney problems.  They're you friend when they help you get better, but then turn on you in the end.

    The 2004-2005 school year has been particularly rough for me, because I have been trying to get off the steroids and I am at the end of the wean.  I have been hospitalized several times so I have missed a lot of school.  I've had to study with a tutor and, I suppose, just do the best I can.

    That brings me here.  Way back when the Chicago stem cell transplant stuff wasn't working out, we had contacted Duke as a possibility.  Long story short, this is what we ended up doing.  It is being considered a study protocol by Duke, however it is a treatment plan like any other.  My doctor is a hematology-oncology doctor that has performed many successful stem cell transplants in her career.  I will be the first Crohn's patient to have the treatment used in this way at Duke University.  As far as I know, I will be the youngest person in the United States to have a stem cell transplant for Crohn's disease.  A little over a dozen people have done this, total. 

Whew.

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