Hi, my name is Jamie. Adam has asked me to tell about my battle with UC/Crohn’s. I am a 27 year old, female, that as a result of her UC/Crohn’s, has an ileostomy and proudly wears a bag. My story will probably be a long one, so I will break it up into separate posts so you’re not reading one long post.
My story begins back in 1989. I was 7 years old and living in Hudson, NH. Not by choice, though. My dad’s job at the time had uprooted us from our native North Carolina up to New Hampshire in 1988, right before my sixth birthday. Moving to a new town in a new state is hard in itself.
Now, with all I’ve been through, my memory is sketchy. The reason why my memory is weird and messed up will come later in the story.
So, one night, my parents and I went out to supper. All I remember is it was some sort of hamburger place. We all had hamburgers but my dad and I were the only ones that got sick. My dad got better within a day or so, but I didn’t. A flag went up for my mother and off to the doctor we went. Now, I honestly don’t remember how I was diagnosed with colitis or why they even thought of colitis. I just remember test after test, tubes up my nose, my arms being tied down because I was ripping out said tubes, being in the hospital with go-lightly being pushed through me, my first colonoscopy (I swear they did it with an empty toilet paper roll, but I was 7 at the time), and being on the wonderful drug Prednisone. Have you ever had Prednisone in liquid form? If you haven’t, thank your lucky stars. I would rather have 10 kidney stones than to have to take liquid Prednisone again.
Being diagnosed with Colitis at age 7 was kinda hard. I wasn’t a popular kid to begin with. I was teased because of my “moonface”, my weight, my diet, and having to go to the bathroom all the time. There were many times I didn’t get to the bathroom in time. It was embarassing. Thankfully the friends I did have understood and would stick up for me. I remember one time being on the bus and I had to go. My friend kept telling the bus driver that I was sick and couldn’t walk home (the bus stop was at least half a mile from my house.) The bus driver ended up driving up to my house because I had gone to the bathroom in my pants. My mom knew immediately something was wrong when she heard the bus all the way up there. I was in tears because I was so embarassed that I had pooped in my pants yet again.
I wouldn’t say colitis ruined my childhood, but it did make it suck.
In 1990, my parents and I moved to a little, itty bitty town in Pennsylvania. If you have ever heard of Mohnton, PA, I will be surprised. I was still sick during this time. I was sent to specialists and to the children’s hospital in Philadelphia. Test after test. School day after school day missed. Still being teased about the “moonface” and my weight. Kids can be so mean. Of course, I had my close friends that stood by me and stuck up for me.
I remember one weekend, I had to do the wonderful task we all know as day of cleansing. I had to drink a very lovely tasting (can you sense the sarcasm?) drink to get me going to the bathroom. To this day, I will NOT touch ginger ale because that’s what it tasted and looked like. My friends kept coming to the door, wanting to know if I could come out to play. I remember crying my eyes out because I couldn’t go out to play. I didn’t like this disease. Not that I liked it to begin with, but not being able to be a kid and be out with my friends made me hate it even more.
My parents were awesome through all of this. I am their only child. They were always there for me if I needed them. I know that seeing your child be sick like this can’t be easy.
We moved back down to North Carolina in 1992, when I was 10 years old. I was happy to be back home, where all of my family was.
And magically, after we moved back, my colitis disappeared and went away. How awesome was that?
Little did my young naive self know, it didn’t disappear and go away. It went into remission. Only to come back 11 years later, when I was 21.
And when it came back, it came back. With a vengance. And a fury.
That’s when my life first started it’s trip to Hell.
This is me at age 9. My first younger cousin was born in April 1992 and we went down to see her in May 1992. I wish sick here and taking Prednisone.