Me and Crohn’s Disease
Part II: Because Puberty Isn’t Bad Enough
I can remember the exact moment I realized that the image we have of our body in our head is not necessarily what others see.
I had two friends over, and we were probably eight or nine. Back then for some reason, I loved leotards, though I was neither a dancer nor a gymnast. I also spent a lot of time playing with some old swaths of purple spandex fabric leftover from a sewing project my mom took on before I was born. I had discovered that if I cut and twisted and draped the fabric just right over my Barbies, I could make some great outfits.
My two friends were not really friends with each other. One was a girl from the neighborhood that I played with every summer as we ran in and out of each other’s yards and houses, and the other was one of my school friends — a buddy to play with at recess and to make play dates on weekends. It was my school friend who suggested we use leotards as the base to create life-size versions of my Barbie creations with the larger pieces of spandex.
The leotard was fine — my neighborhood friend had worn them every day in dance class for at least five years. But when my school friend started to drape the fabric over my neighborhood friend’s body, she began to sob. My school friend and I stood shocked and worried, and we couldn’t understand what she was telling us was wrong.
“I’m too fat,” she wailed, finally, in a last ditch effort to make us understand her anguish.
Now, we were kids. Puberty had not even begun yet, with all of its awkward changes. And yet, my friend, who looked to me like every other girl I played with, somehow saw herself in this way. I was dumbfounded. How could she not see what I saw? And what did people see when they looked at me?
When I was little, my aunt called me “Peanut” because I was so tiny and light. But as soon as I hit thirteen years old, my body suddenly felt heavy and full. I gained twenty pounds in the course of four months, then slowly started to grow up and into it. This coincided with the stress of a new school as my family jammed into my grandmother’s four bedroom, one bath house, not to mention a bad back-to-school haircut and a newfound interest in the perfect people I saw in movies, on TV, and in magazines.
I remember sitting in the backseat of a friend’s parent’s car that summer and looked down at our bathing-suit clad bodies on our way to get ice cream after a day in the backyard pool. My friend’s stomach was flat and smooth in a bikini. My belly in my one-piece suit looked like a Shar Pe face — all wrinkles and lumps. I read in magazines that some girls had “a naturally rounded belly,” but as I looked at all the girls around me, not one of them seemed to have the pooch that stuck out from my young body.
Thus began my war with my belly. Inside and out.
It took a very long time for me to admit to anyone that I was having stomach pain and diarrhea. What thirteen-year-old wants to admit that they’re close to pooping their pants every day? It was bad enough to have an oily face, a fat stomach, and legs that I thought were my best feature until someone at some point commented, “REALLY? You like your LEGS? Huh.” I didn’t want to announce to anyone that there was something that made me even MORE undesirable to be around.
And, to be quite honest, I was pretty sure I was causing the whole problem, and I didn’t want to stop doing what was causing it. I often got items of clothing from my mother’s cast offs, especially as I grew to a size that was almost equivalent to her usual clothes. I’m not sure if she gave me the shaping underwear because she knew I was self-conscious about my belly, or if they were just mixed in with some things she gave me and I decided to wear them on my own. But after trying them on once, I realized the tight fit and high-waisted cut flattened the belly I loathed. I began wearing them every day.
And right around that same time the spasms started.
How can I describe a stomach spasm? Think of a water balloon lodged in your abdominal cavity. Then imagine that someone has squeezed and popped that water balloon and the water is the pain you feel spreading out to all of your insides then dissipating as the wave rolls through. Then clench your anus as tight as you can get it because your entire being is now being spent holding in the rush of water that wants to get out.
Imagine that this scenario happens about half an hour after every meal every single day and sometimes also at random times that have nothing to do with eating. Now add in fits of noisy, smelly gas that can’t be contained and you have the utter humiliation of having Crohn’s disease as a teenager. And mine was a “mild” case.
By the time I finally decided to tell my parents the problems I was having, I was old enough to visit some grown-up doctors. Except I didn’t go to grown-up doctors because we didn’t know that my pediatrician didn’t know how to deal with “stomach problems.” So for a long time, all they would do was tell me to take Immodium or Pepcid every time I ate.
I became very good at hiding my episodes. I found out that if you hold it in long enough, the feeling of needing to use the bathroom fades. So, I’d just sit down wherever I was in public or in private and take deep breaths until I felt like myself again. The spasms would sometimes cause my bladder to leak, and so I learned to always have an extra set of underwear on hand in case I had an accident.
I was a master of getting out of activities when the spasms became too much. During the last year of junior high I joined the cheerleading squad. For a hot minute. That’s how long it took me to realize that the moves I was doing combined with the nervousness of performing were causing extra spasms. Most of the girls on the squad were more popular than I was, and I was embarrassed and concerned that I’d have an accident and “out” myself to my social superiors. I quit the team before our first exhibition.
I was a member of NEED, an acronym for something I can no longer remember (something Energy Education something), but was basically an ecology club. We went to camp for a week to learn how to run a workshop that taught younger kids about the different ways humans get energy (hydro power, solar power, petroleum, coal, etc.) and how to conserve energy in our lives. We had one of our regularly scheduled workshops on a school day, and the night before I hadn’t slept.
For those not in the know, lack of sufficient sleep can cause intestinal distress, so I was already starting to worry about finding a bathroom as I stepped into the school van for an hour-long trip to the workshop. I basically ran into the building the moment the van stopped, and flew into the bathroom. I didn’t make it in time. And, because it is way easier for people to understand puking, I claimed a stomach bug and laid on a bench away from everyone as I waited for my dad to come and get me.
By this time, I was starting to get used to my periods of spasms, pain, and diarrhea. I knew there were some foods that made things worse (tomato sauce was a big trigger at the time, as were greasy foods), so I could minimize the damage when I was at school or out with friends. If we were going to be somewhere and I didn’t know when I’d be able to get to a bathroom, I just didn’t eat. When the pain did hit, I just waited it out until the feeling passed, sometimes hiding from my friends for a minute or two to regain my composure. I was also taking Immodium daily, usually several doses. It didn’t really help, but it would delay the spasms sometimes if I was out for a long time at the mall or staying overnight at a friend’s house.
I lived in terror of clogged toilets, filthy toilets, toilets with no paper on the roll.
Still, I thought I was managing okay. I could handle this.
Then, in 9th grade, I did something really stupid. I joined the Cross Country team.
To be continued…
