I was diagnosed with Crohn's Disease in 1994. Along the way, I learned how to deal with this disease- I'm fluent in doctor speak, there's no drama in my ER visits, and I can laugh at just about everything. And along the way, I learned how to stop fighting through the tests, the pain and the surgeries (to remove portions of my ileum).

I learned how to live.

I like my life, and I'm not so sure I'd be here if it weren't for Crohn's and everything that's come with it. So I'm inviting you into my life. I hope my experiences, the hilarious and the horrendous, can give some perspective on a patient, a daughter, a wife and a happy woman.

This isn't just about me. I've got some suggestions for your next doctor or hospital visit at the bottom of the page.

Nate and Me

Nate and Me
My husband and biggest fan is always by my side

Friday, May 21, 2010

In the Beginning, Part III

Throughout most of high school, I somehow managed to convince myself I was OK. I was a good kid. I didn’t drink and I didn’t smoke. I poured myself into my studies. It helped to distract from abdominal pain and blood in the toilet.

I ignored belly aches by making jokes and distracting myself.. And I began my senior year playing some great volleyball. My picture was in the paper after we beat the private high school in town and I had spiked and served and dug that ball like a champ.

I’m 5’9” and was feeling good. But day by day and game by game, I was making mistakes. I couldn’t jump as high. I started sweating more than ever before. I put my hair in a ponytail, and at the end of a game I could squeeze my ponytail and pull to the end of it only to watch a stream of sweat drip from it.

I was sidelined more and more often. I worked hard at practice. I lifted more weights. I walked home from school, I didn’t get a ride. Still, my coach, Ms. Gustafson, yelled at me for completely going backwards and performing worse than I did as a junior. I felt just awful. I felt self-conscious, and I felt like a failure.

I stayed after practice and lifted weights or ran stairs. I would spend every night studying for advanced placement classes. I was determined to go to Northwestern University. Some nights I went to bed well after midnight, but got up around 5:00a.m. to make it to show choir practice before school started.

I don’t know how my body allowed me to keep abusing myself when I continued to lose blood and feel exhausted.

About a week before Christmas in 1994, I remember giving blood to the Red Cross. They were concerned I was anemic, but I was close to the acceptable line, so they took my blood anyway. If it wasn’t usable, it wasn’t usable. I was OK with that. I was just excited that I was allowed to give blood for the first time.

Little did I know I’d need that blood back… and a whole lot more.

I remember that bedspread in my bedroom the day after Christmas 1994 so well. There I was, nearly unable to move. I was so scared. I didn’t feel like a 17-year-old. I felt like a little kid. I could not figure out why I felt terrible. I mean, I knew why I had a huge scrape on my knee—we were sledding and I flew into some bushes. That made sense. This didn’t.

Time moves so slowly when you’re in pain. It felt like I’d spent hours holding my belly and tracing the pattern of my bedspread over and over. But it was only 7:00. We finished supper an hour ago. I didn’t know. It seemed like hours had passed.

The next thing I know my brother, Joe, was pounding on my bedroom door. He’s banging and kicking and screaming.

“Get out here and do the dishes!! I know you’re just faking. Who the hell do you think you’re fooling?” Joe was a sophomore in college at the time and home for Christmas break.

I couldn’t respond. I just hurt so much. I opened my mouth and only a little moan came out. He had walked away. I listened and I could tell everyone had gotten up from the table, Mom had her coffee and everyone was making plans with friends or with each other.

Joe came back and opened the door. We all had small bedrooms. I was the middle kid, so I had my own room closest to the kitchen. It’s barely big enough for my dad’s office now.

I couldn’t see his face with the light behind his head, but I could clearly here his low voice, “I can’t believe you. You make me sick. I better not see you all night or you’re going to be in some serious trouble. Couldn’t you come up with a better excuse?”

He slammed the door and said as he walked away, all I could hear was, “You make me sick…”

I seriously don’t know if it was the times, if it was us having such a big family that no one had time to pay enough attention to each other, if I was just such a smart-ass and a tomboy who would keep playing through blood and bruises…. But no one seemed to notice something very serious in front of them.

I went back to tracing the patterns of the pink and green swooshes on the bedspread with my finger, while I continued to hold my belly with the other. I didn’t have a TV or a computer or a phone. So over and over, as if in a trance, I just moved my fingers to the pattern I could barely make out in the darkness.

That must have lulled me to sleep. Around 9 or 10, my mom turned the light on and sat on the bed next to me. I was still on top of the covers with my clothes on. She rubbed her hand along my hair.

“How’s my Mary Sue feeling?” I whispered, “It hurts so much, Mom.”

She said, “I know, I know. Why don’t you get into your pajamas and get some sleep so you feel better in the morning?” She didn’t understand that I could not move.

“Mom, it hurts too much to move.”

“I know, but you’ll feel better if you do.”

It was like having those broken ribs. I was screaming on the inside. Then my mom said something else in a nurturing tone, turned to leave and quietly closed the door behind her. She left the light on.

I fell back asleep. I was so exhausted from the pain. I woke up sometime in the very early hours of the morning, still in my clothes, the light still on, and my stomach in worse pain that before.

If you’ve ever had the flu or food poisoning, think about the pain right before you have to make a run for the bathroom and vomit. You feel every muscle clench as your body rids itself of whatever you ate or drank. Think about what it’s like when your colon punishes you for indulging in what you shouldn’t. The pain of the gas and impending diarrhea makes you feel like your insides are trying to push themselves all the way through your body. All of your insides.


I got up, my right arm numb from sleeping curled up on my right side since 6:00 p.m. I was a mess. I stumbled to the bathroom.

The next thing I remember is seeing some of that casserole in the toilet. I also saw blood. It wasn’t bright red, but it was dark red and definitely blood. My mouth had that metal taste to it. I was thrilled to be puking. Maybe I wouldn’t hurt anymore. I was thinking, “Please, oh, please, let this be what’s wrong… But what’s with the blood?”

I didn’t have time to close the bathroom door. My dad walked by to get a glass of water. Pops would take out his hearing aids when he would go to bed. So as I knelt in front of the toilet, I turned and looked up at him. He mouthed the words, “Are you OK?” I shook my head no. He went to the kitchen and came back. He put his hand on my back and asked what was wrong. I could only whisper and he couldn’t hear me. So I just waved him away. He mouthed the words, “See you in the morning.”

I fell asleep for another hour or two on the bathroom floor. I woke up in severe abdominal pain, and this time whatever it was I had been throwing up wanted to come out the other end.

I was on and off the toilet for another half hour or so. There was blood in the toilet. There weren’t cups and cups of it, just drips. I had the stale taste of vomit in my mouth and my butt hurt. I hardly had the strength to keep washing my hands, let alone brush my teeth. I finally made my way back to bed. It’s the closest room to the bathroom, so it wasn’t a terrible journey. My pain had subsided a little bit… I prayed out loud to God to make me feel better. He listened… for a few hours, anyway.

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