Medically reviewed by Jenny Blair, MD
It all started with loose bowel movements. At first, they seemed to happen on the weekends or when I ate more fast food than normal. I was 16 years old at the time and I really didn’t pay much attention to it. It was easier to ignore it than tell someone about my bathroom issues.
It Got Worse Before It Got Better
Over time, I was going to the bathroom more and more often. I’d have to ask my teachers at least a couple times during class to step out. I started to realize this wasn’t normal, but I thought maybe I had the flu or some stomach bug, so I bought Tums and ignored it.
My bathroom problems got worse—so I asked my mom to schedule a family doctor visit. The doctor didn’t think that it was much to worry about and told me follow a BRAT diet (bread, rice, apple sauce, toast) to help calm my stomach. When that didn’t work, she put me on antibiotics, but at this point I was starting to see blood every time I had a bowel movement.
Because of my age, bathroom troubles were something I really didn’t want to talk to my friends or family about. But when it got so bad that I was bleeding all the time and I wasn’t able to leave the bathroom for more than 10 minutes without having to run back, I knew I had to do something.
Entering the World of a Chronic Illness Diagnosis
Approximately 6 months after I first noticed symptoms, my parents made an appointment with a gastroenterologist. I saw the doctor the next day and had a colonoscopy booked a few days later. Prior to seeing that doctor I didn’t even know there were doctors that specialized in different conditions. I had no idea what a chronic illness was—or that they even existed. Heading into this colonoscopy I thought for sure they’d figure out what’s wrong with me, give me a medication and I’d be better in a few weeks. I was wrong.
The prep for my colonoscopy was like a form of medieval torture. I was miserable and didn’t move from my bed—other than to take multiple bathroom trips. I watched TV and salivated over all the KFC commercials that just had to come on while I was on a no-food-diet for 2 days.
Heading into the colonoscopy, I was scared but I was also looking forward to finding out what was wrong with me and getting it taken care of. I didn’t want to be sick any more. I wanted to be a normal teenager and enjoy the last year of high school.
Unfortunately, because of my high tolerance to sedatives, I remember a lot of the colonoscopy procedure. It was fairly traumatizing seeing my insides on the screen in front of me.
When the procedure was over, though, I was able to relax with my mom in another hospital room. I was a happy girl, high on sedatives, dreaming about food, and knowing that I would finally get this sickness resolved.
And that’s when the doctor walked by.
A Moment Frozen in Time
My mom asked the doctor if he knew why I was in so much pain. He looked at her blankly and said: “Yes, she has ulcerative colitis. Please make an appointment to see me in my office.”
I will remember that moment for the rest of my life. I was in shock. I thought: What’s ulcerative colitis? How do we get rid of it? What caused this illness?
The first time the doctor said the words chronic illness, I felt like my life was flashing before my eyes. The only thing I could do was listen and do every single thing this doctor told me to do. He put me on various medications throughout our treatment together. He was also very adamant that food and nutrition had little or nothing to do with IBD—which stuck with me a long time.
My Changing Attitude on Diet and IBD
After my ulcerative colitis diagnosis, I was severely ill for 12 long years and my symptoms were not well controlled at all. Also, during that time, my diagnosis was also changed from UC to Crohn’s disease. Unfortunately, my first GI doctor passed away, and it took me quite some time to find another GI doctor.
Following my Crohn’s diagnosis, my illness became my identity, and I had no hope that I’d ever achieve remission. Over time, due to weight gain as a side effect of one of the Crohn’s treatments, I began to read and research other ways to control my condition—with the approval of my new GI doctor. I delved into the relationship between inflammation and diet, Crohn’s and diet, and other nutrition- and diet-related subjects. And while it’s unclear exactly what role diet plays in IBD, I found through my own trial and error that some foods did trigger or calm flares for me.
After years of trial and error—and with support from my doctor—I was able to control my condition in a way that made me feel physically and mentally empowered. Although it was a long journey—with a misdiagnosis, changing doctors, severe flares, and lots of experimentation with diet—it was well worth it, especially since I now have the privilege of helping others with IBD reach their health goals.
Jenny Blair is a writer and journalist covering science, medicine, and the humanities. She earned her MD at Yale University, then completed a residency in emergency medicine at the University of Chicago. After several years in practice, she transitioned to working with words and ideas full-time. Jenny has contributed to Discover, New Scientist, Washington Spectator, and Medtech Insight, among other publications. She lives in New York City.
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