When I was a kid, I was incredibly squeamish about anything having to do with medicine, blood, bodily functions. So when my first symptoms started presenting, and came on quickly -- one day in middle school, I noticed blood in my stool -- I was a little freaked out, but I ignored it because generally I felt fine. Not long after that, though, when I had a horrible, embarrassing accident at school, I was very freaked out and figured that I had to tell my mom. That resulted in my first trip to the emergency room.
In high school things started getting quite bad. I was prescribed prednisone, and believe me, anyone who's ever experienced the classic "moon face" side effects will understand when I say that it was not fun to be a teenager with that condition. I wasn't worried about whether my butt looked too big. I was scared my face looked too big.
I'm not going to pretend that I'm glad I have Crohn's. But one thing I can point to with some pride is that I do think it's made me stronger -- in a certain respect, at least. Remember, I was a squeamish child. Up until I was 13 or 14 years old, hospitals freaked me out. I avoided medical procedures if I possibly could.
But these days, it's different. I have an older sister, and to me she was always the one in the family who was super brave. Now, when she has to get a blood test, she gets quite nervous about it, and I'm like, "Ah, it's no big deal. Get in there."
I know there are people who have been living with Crohn's for far longer than I have, but even though I'm 21 I sometimes look back and amazed at how much I've gone through since I was diagnosed. Around February of eleventh grade, for example, I was hospitalized and didn't make it back to school for the rest of the year. My close friends knew what was happening, but I do think it was a bit of a mystery for the majority of my classmates. I remember a lot of people seemed really surprised when I showed up to school on the first day of twelfth grade.
I have an ileostomy now, and over the summer I had a proctectomy, or rectal removal surgery. I still go back and forth to the clinic every few days to get my wound repacked and cleaned. Then again, it used to be home care, and I remember thinking, "Oh my god, I'm 21 years old and I've got home care coming to visit me every week. This is my life now?"
So it's getting better. My only real problem right now is that I can't exercise that much. I used to really like doing yoga, but when you have a wound in the middle of your butt you can't really do a lot of yoga, you know?
I'm taking everything day by day. The proctectomy wound is a lot smaller than it used to be, and I feel that in a few months, if everything goes well, I might be out of the woods. In anticipation, I've already booked a trip to Europe a couple weeks after I finish this term at university. It's a way to assert my independence, and to prove to myself that I don't have to worry about this thing or that thing going wrong. I've had an ileostomy for almost four years now, and at this point I think I'm as comfortable with it as I can be.
I believe that everything that comes along with this sort of condition is really only embarrassing if you want it to be, or if you make it embarrassing for yourself. There's a bar here where I go to school that has a stand-up comedy night once a month, and I've been performing there for a while. I get up and open with something like, "Hey guys! Fun fact: I don't have a butthole." It becomes okay to laugh at it, then. People are immediately engaged and want to know more. They ask how it happened, how I deal with it. It turns into a give and take, and it becomes easier and easier to talk about it, which sort of takes the power from the disease and gives it back to me.