Consider yourself warned. In the post below, I’m going to be really honest. I frequently get asked questions about ulcerative colitis, living with ulcerative colitis, what the illness is like, what the symptoms are, and what happens if I eat things I shouldn’t. I tend to shy away from answering because… well… it’s not very polite to discuss “number twos” in casual conversation. But the more I search for healthy lifestyle tips, recipes, blogs, and first-hand accounts of living with ulcerative colitis, the more I realize that there isn’t much out there. I feel like I should be honest here. But it’s not pretty. So for the squeamish (or those who just don’t want to know about my bodily functions), I understand. But you should probably stop reading here.
Easter weekend always reminds me of my ulcerative colitis diagnosis. It’s one of those unlikely pairings that will forever live on in my mind.
Six years ago, I missed class on a Friday to come home and see my doctor. I was exhausted all the time. I’d been having stomach pains, bloody stool, and had all but given up on eating. Nothing, and I mean nothing was sitting well in my stomach. Each time I ate, I was rushing to the bathroom as soon as I finished my meal. Living in the dorms, I was thanking my lucky stars that I had applied to be a Resident Assistant and was accepted. Life as an RA meant life with my own bathroom. In the early days of my ulcerative colitis, this was a God-send.
My doctor ran some tests, and while we were awaiting the results, she suggested I treat it as Irritable Bowel Syndrome. High fiber. Take fiber supplements. Eat high fiber foods. Those of you who are familiar with ulcerative colitis or Crohn’s disease know where this is going.
Almost instantly, I got much, much worse.
The Wednesday before Easter, I called home around 3:00 am to tell my mom that I was feeling dizzy, light-headed, and losing a lot of blood. Three hours away but in “Mama Bear” mode, my mom went to work. While I curled up on a friend’s futon and went to sleep, Mom sprang into action. She called my dad, who happened to be travelling for business near my school. He quickly cancelled all of his appointments and started driving to pick me up. Then, my mom called my doctor, got a reccommendation for a gastroenterologist, weaseled her way into an appointment that afternoon and a colonoscopy the very next day.
I recently had a chance to look at my intake paperwork from that very first visit to the gastroenterologist. It said things like, “I am in miserable pain all the time. I feel terrible. Nothing makes it better. I don’t know what makes it worse.”
The prep for that first colonscopy was brutal. Preparation for any colonoscopy is kind of gross, but I was so sick that I could hardly keep my medication down. When I tried to drink the “beverage solution” mixed with Sprite, I threw it up. A call to the GI doctor and I was given pills to swallow. I was so dehydrated I could barely get them down. I cried, I choked on Mixed Berry Propel (which I can’t drink to this day), and I did not sleep a wink. My parents were nervous wrecks, afraid that the prep would be for nothing if they were unable to do a colonoscopy. We all wanted a diagnosis.
Luckily, I survived that night and made it to the hospital for my procedure in the morning.
I have no idea what the doctor said to me afterwards. I vaguely remember calling my then-boyfriend (now husband) and telling him, “I have colonosis,” after which my mom took my phone away and explained to him what was happening.
I was diagnosed with Stage 2 Ulcerative Colitis, affecting the entire colon. I also had a B12 deficency due to lack of absorption. The doctor put me on steroids, medication, B12 injections, and advised me to make changes in my diet. Ulcerative colitis affects each person differently, so there was no specific diet he could give me to follow. He suggested I avoid foods high in fiber, whole grains, raw fruits and vegetables, seeds, and nuts. But really, the only way to find out what I couldn’t tolerate would be to keep a food journal.
When I felt well enough to return to school, my mom came with me for the first week. She stayed in a hotel, but was with me as soon as I woke up in the morning, making countless trips to McDonald’s for chicken nuggets, the only food I could always tolerate in the first weeks following my diagnosis. (Thanks to Prednisone and McDonald’s chicken nuggets, all that weight loss was gone almost instantly, as I went up three sizes in a matter of weeks.)
It has been a long journey since then, and one that I’m finally going to talk about here, little by little. I’m still learning about what my body can and cannot tolerate. I’m figuring out how to properly fuel my body to take on endurance sports, using just the things I can eat. I’m trying to learn how to eat healthy, and stop relying on Mickey D’s when I am flared. But I have come a long way in six years, and if sharing this story helps just one other person… it’s worth it.