Name: Matt McBride
Age: 45
Location: Baltimore, Maryland USA
The first
thing I remember is being 15 years old, and over about two weeks suddenly
needing to poop a lot. Then I recall the
blood in the toilet. When I told my
parents, they thought I was exaggerating.
Finally, one afternoon I left the toilet unflushed and bloody smears all
over the bathroom. When I called my
mother and father to see it, they were horrified.
By the time
I saw the pediatric gastroenterologist a day later, the blood was so heavy that
I couldn’t see past the surface of the toilet water. By that afternoon – June 11, 1987 – they were
preparing me for arrival at Johns Hopkins in Baltimore. I remember being scared when they told me I
was going to Hopkins. For 40 years,
Johns Hopkins has been ranked among the top three hospitals in the world. It’s where they send people who aren’t supposed
to live.
What I
remember from my first night in the hospital is staying up until 3 in the
morning answering a barrage of questions.
I remember my first physician was Dr. Livingston, and I spent all night
trying not to say, “Dr. Livingston, I presume?”
I remember this was the first time I ever heard the word “stool,” and I
chuckled as I tried to conjugate the verb “to stool.” And I remember their telling me I had one of
the worst cases of UC they had ever seen.
I didn’t get out for almost three weeks.
By the time
I was 18 my colon was too damaged to stay in me. If I didn’t have the ileostomy, I would
develop colon cancer within three years.
Maybe I’d live to be 25. I opted
for the ileostomy. It wasn’t much of a
choice, and for years I hated myself for not being brave enough to die. I would have terrible accidents. The stench was awful. The bag would come undone and empty all over
me in my sleep. It was one humiliation
after the next.
In 1990, the
internet didn’t exist, and social media was still 20 years away. I knew nobody my age who was living through
what I was. I had to learn how to have
an ostomy on my own. I remember feeling
very, very alone. I sank myself into
music and learning to play the guitar to keep the depression at bay. After a few years, I learned to accept myself
the way I was, but also to never tell anybody I had a bag.
And then one
day when I was 35, 17 years after I first got my bag, I discovered an internet
message board of people just like me.
Now I’m not afraid to talk about it to “normal” people. I even wrote a book about my experiences
(shameless plug… “The Witch of Washington”).
I am one of the last of the “old school” people with ostomies who once
lived in shame and fear, but it is nice to not have to be afraid of it anymore.
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