I was diagnosed when I was 10 years old. Just 10. It wasn't until I became a parent myself that I realized how young that really is. I had been having stomach cramps and began bleeding at a fifth-grade winter retreat, and knew -- because my mom volunteered with the American Cancer Society and I'd read a lot of the stuff she brought home -- that that wasn't a good sign.
The diagnosis came, nonetheless, as a surprise and a shock. Ulcerative Colitis wasn't something I'd ever heard of in my town of 1,000 people in rural Michigan, and in 1987, medical options were still relatively few. I took the prednisone that made my face swell, and made repeated, painful trips to the bathroom and then to the hospital -- about an hour and a half away from my home. I had the colonoscopies and swallowed barium, and was given a strict diet: For an almost-sixth-grader, being told you couldn't eat ice cream was a terrifying prospect. But I took the medicine and I (mostly) obeyed the diet. I would cry in pain in the bathroom. And I kept remembering what the doctor said: If I didn't do what I should or it just didn't work, I would get an ostomy.
As I entered seventh grade, the ostomy prospect loomed larger, and I felt it was surely something that would end my life. How could a teenage girl walk around with a bag attached to my stomach? How could I face anyone? How could I go to the beach? But then -- it happened. By the time I was in eighth grade, I had begun seeing doctors at C.S. Mott Children's Hospital at the University of Michigan Medical Center -- by all accounts, one of the best teams of pediatric surgeons there was. The hospital was three and a half hours from our home, but we made the drives and got to know (and love) the doctors, and when they sat me down and told me I couldn't keep taking the prednisone, that the treatment just wasn't working, that my large intestine was so ulcerated it could cause cancer, I knew I was getting the plastic bag.
I got my ostomy in eighth grade. I remember how it felt the first few weeks, where I could feel things draining into it. My mom would change it for me because it scared me too much. I hated it. I hated it when it fell off in home ec class and spilled its contents all over my team's table and I had to pretend it was vomit because I couldn't bear to face reality. I hated my life. But the doctors had promised me they'd remove it in six months using a relatively new procedure, and I'd be back to a new normal -- and that's what happened.
Except it didn't, really. "Normal" following my pull-through surgery was going to the bathroom 40 or more times a day. No amount of Kaopectate, chugged from the bottle, or Metamucil, taken in large scoops, would ever regulate me. Family vacations were a series of stops at gas stations and rest areas. I needed to know the location of the bathroom wherever I went. I feared I wouldn't make it through the high school marching band show I was in, or finish the race I was running in track, without needing to run to the bathroom. In the midst of it all, I suffered two severe adhesions, one of them requiring an ambulance to Mott on Christmas Day and one requiring extensive surgery. Somehow, ulcerative colitis had begun to define my life -- something I couldn't take. And so, when I was 17, I made the decision: I would have the ostomy put back on.
It's funny to consider the weight of the life-changing decision I made at just 17. But it turned out to be the right one. That ostomy allowed me to finish high school and walk the stage as valedictorian. To attend the University of Michigan (for four years I was just a quick walk from the medical center, finally!) and march in the band ... even when marching meant traveling to the Rose Bowl, long parades and hours on buses. I was finally comfortable. The ostomy enabled me to study abroad, to work long nights at the college newspaper as I discovered my future career and a passion for journalism. It allowed me to move to Chicago and start fresh in a giant city. It allowed me to become a mother: my greatest gift. It also, in time, has allowed me to tell my story.
I turned 40 years old this year. Thirty years of fighting. The road has not been easy, and it has been long. Any of us who have been on that road know the bumps and the turns -- the hospitalizations just when things seem to be going well; the ER visit because I ate too many nuts and they clogged my intestine; the bag that hurts my skin in the summer because of the heat and the humidity. In college especially, I had relationships that fizzled when I would tell the boy about my ostomy. I still have the letter I received from a longtime family friend around that time. It was pages long, but boiled down to one sentence: Your ostomy is a gift. You can weed out the boys who won't stick by you in the long run just by seeing their initial reaction when you tell them you have it. And -- the letter was right. When I told my now-husband my story, it didn't change his love at all. He barely even changed his expression. He just hugged me.
Ulcerative colitis changed who I am. It affected my family and, for too long, defined my childhood. Yet it also made me appreciate the little things. I am so grateful that I will walk on Sunday in Glenview as a 30-year survivor. I am so grateful to the doctors who rebuilt my body and gave me new hope. I am grateful for life.