Mallory Lewis, now in her mid 20s, was only 12 years old when she was diagnosed with ulcerative colitis, an inflammatory bowel disease. Corticosteroid drugs made her weight balloon in her teens, and she needed a special plan so she could leave the classroom to use the bathroom as often as she needed. Her symptoms got worse during her freshmen year at college, until she essentially didn’t leave her dorm for fear she wouldn’t find a bathroom. By her sophomore year, Lewis had opted for surgery to have her colon removed. She did well until recently, when she was diagnosed with Crohn’s disease, another inflammatory bowel disease. She has had multiple surgeries for related problems.
I was 12 when I was diagnosed with ulcerative colitis. I was at home and it was 3 a.m. and I had to go to bathroom. I didnt usually get up at night to go and my mom came in—like any mom would—to check on me because I was in pain.
She looked in the toilet and it was filled with blood. She tried to keep me calm in the middle of the night—it was just she and I living together then—and called the pediatrician. The next day, the doctor said it could be a number of things; he gave me an antibiotic and referred me to a gastroenterologist.
After I was diagnosed with ulcerative colitis, it was hard to get under control. I started taking medication and found out quickly that I was allergic to 5-ASAs (aminosalicylates, or anti-inflammatory medications that contain 5-aminosalicyclic acid).
I started taking corticosteroids, which are powerful immune-system-suppressing drugs, and I blew up like a balloon. I was young and already had weight and body issues so it was rough, really hard. I was in remission on and off during high school and my mom fought to make it as easy as possible for me. She got me a 504 plan, which is a special accommodation for students with physical or mental disabilities; it meant I could leave the classroom at anytime to go to the bathroom without asking for permission. If I missed school, I wouldnt lose credit. The teachers were very understanding.
My symptoms got worse in college
When I went to college, things got worse. I basically didnt leave the dorm my freshman year. I was really sick—worse than when I was living at home. I dont know if it was the stress or because I was away from home or eating different food. After my freshman year, I was almost becoming agoraphobic; I didnt want to leave my room because I was afraid I wouldnt be able to find a bathroom. I was exhausted and had stomach aches all the time.
So my mom did some research and found out about pouch surgery, where the colon is removed and a pouch is created out of the small intestine to take the place of the damaged lower intestine. It is an option for some people, and I had it done in 2003—I always say Ive been colon free since 2003. I had the surgery during the summer of my sophomore year of college and in August I went back to school. By March I had an obstruction of the small bowel, but the surgeons snipped it and I was better right away.
The doctors said I was pretty much a poster child for pouch surgery because I did so well. I had no problems until recently. This year, however, has been hellish. I was diagnosed with Crohns disease, a different type of inflammatory bowel disease.
I can still leave the house, but I have had five surgeries since February because I keep getting fistulas, which are abnormal tunnels that connect different body parts like the rectum and the skin or from organ to organ. I had a series of abscesses, which are infections that were caused by the fistulas.
Now, I am on immune-system-suppressing drugs and I take antibiotics daily; I also give myself an injection once a month. I hope that the combination of medication will prevent a flare-up. I am convinced that it will help, but there are always side effects, like nausea and ringing in the ears. I cant drink alcohol—not even the tiny amounts found in vanilla extract or cough syrup.
I also have degenerative disk disease in my lower back from taking the corticosteroids. Theres always a risk with the drugs, which are known to have side effects, especially when you start taking them at such a young age. I was always athletic when I was growing up and degenerative disk disease is something people usually get in their 40s and 50s. So now I have joint and back problems from the ulcerative colitis, Crohns disease, and psoriasis, which is more common in people with Crohns disease.
But it could be worse—I have my legs and arms and my brain is intact. People can live a normal life. I have had boyfriends and I live with my boyfriend now.
And I still have a sense of humor. I dont think I would be able to get out of bed every day without it. It is all about your attitude and sense of humor; you have to laugh at it because it could always be worse.
One bonus? I always know the location of the nicest bathrooms.