My Story - Part One

From the best of my recollection this is what my experience has been.

For as long as I can remember (probably around age of six or seven), I have had stomach aches, random diarrhea, fatigue and joint pain. I was a slender little kid, wearing slim sizes until puberty, and its associated weight gain, hit.


The stomach aches were dismissed by my school nurses and my pediatricians as a "nervous stomach". It was true that my abdominal pain and intermittent diarrhea seemed to increase in times of stress - whenever I had a test or big project or book report due. The joint pains were accounted for a "growing pains". I remember waking up in the middle of the night with charlie horses in my calves so badly, I would scream, waking my parents up. Heat, calf rubs and ibuprofen took care of those. The tiredness? I was an active, growing child and "needed the rest". Sure every kid needs a nap - but after every soccer or field hockey practice and game? After every birthday party or sleepover?


This continued through to high school. And so did labels: hypochondriac, "emotional" (how can having emotions, as a human, be not "normal"? And what is "normal? - another topic for another time - I digress).

Senior year of high school beginning in the fall, I lost more and more weight. My jeans began falling off of me. I came home exhausted from school everyday and by the end of October was too exhausted to get up and even go to school. I was missing more days than I was attending. After going to see my GP (General Practitioner) - the same who told me three months earlier I had Irritable Bowel Syndrome and needed merely to increase fiber in my diet - she sent me to a GI (Gastroenterologist).

He listened to my history, looked at me, looked at recent blood work and told me he thought I had Crohn's Disease and scheduled me for a colonoscopy. As I began to get tearful the Doc asked what my worst fear was - I told him the big "C": cancer. The Doc told me at my age of 17 that would be highly unlikely.

I had never heard of Crohn's Disease, didn't know anyone who had it. My parents had heard of it, but didn't really know what it was. We went home and googled it. I remember sitting at my father's desk in his office in our house, breaking out into tears, saying "I don't want to have this."

Prepping for the colonoscopy was the worse part of the whole colonoscopy experience. This was back in 1999 - the days of the Fleet Phosphosoda prep. If you haven't experienced this delightful "drink": imagine taking a cup of water and dissolving as much baking soda into it as it will allow. Then drink it as fast as you can without simultaneously barfing. Within an hour you begin to have frequent, painful BMs (bowel movements). You have to undergo this experience (if I remember correctly) three or four times. Until your BMs are watery and clear. And throughout this you are only permitted to have clear liquids - no solid food, and nothing red or purple colored. Red or purple appears like blood through the scope. And so I underwent through a day of this.

The next day I awoke, and my mom drove me to the hospital, where I was hooked up to an IV for fluids and anesthesia. They wheeled me into the endoscopy suite and shot some of the "good drugs", the stuff that makes you happy and sleepy, into my IV. I woke up to The Doc saying "Emily, you have Crohn's disease." I responded with "Thank God". I finally had a name to everything that had been going on for the past ten years. And even better, something that had an established treatment.

The Doc told me my "Thank God" was the weirdest response he had ever had to a colonoscopy result.

History to be continued. . .