As a child, I’d always loved mysteries found within the pages of books. Detective novels like Nancy Drew, Hardy Boys, and other who-done-its. Little did I know that, as an adult, I’d be solving mysteries within my own body.
It was easy to overlook the initial warning signs. As a healthy, competitive swimmer between the ages of 8 and 18, I glided through water for up to 3 hours daily. Stomach cramps would pop up occasionally, but they were easily dismissed—I’d waited too long to eat, perhaps, didn’t eat enough protein, or swam too soon after a meal.
At age 14, bouts of fatigue and joint pain began to set in. At first, doctors worried I had mononucleosis—a viral infection. Testing revealed that I didn’t have it, but they did discover heightened inflammatory activity in my blood. Although my symptoms receded, my mom was concerned. My high pain tolerance usually meant I downplayed issues.
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I started at Duke University in 2004 for pre-med studies. It was way more academic pressure than I’d ever experienced before and what had been rare soon became predictable. About three or four days before an exam, stomach cramps swamped me when I attempted to study. After the test, symptoms subsided. But the cycle would begin again as the next exam approached.
Then, cramps started cropping up before my period or after meals, along with new symptoms like diarrhea and constipation. Stress worsened any pain and urgency.
Is it a cyst? Lactose intolerance?
As my second Duke semester began, an all-day stabbing-like pain emerged in my lower right abdomen. I went to the campus health clinic, concerned about appendicitis. The clinic’s ultrasound showed an ovarian cyst and a mysterious fluid in my right lower intestinal quadrant. Could an ovarian cyst could be the culprit?
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I pored over now-familiar medical sites. It didn’t add up that the cyst could cause this extreme sensation, while cramps came on at different points of my period, atypical of a cyst. Labs showed elevated white blood cells, platelets, and inflammatory markers, also atypical.
My mother and I consulted with my childhood pediatrician, who pointed out my lactose intolerance as a baby—could that be the cause? I was tested for lactose sensitivity, celiac disease, a wide range of STDs, thyroid conditions and other issues for clues. Nothing.
But before I returned home to Connecticut for spring break, my pediatrician suggested a colonoscopy based on that mysterious fluid, elevated inflammatory markers, and my joint pain.
When I woke up from sedation in the recovery room, the physician shared discouraging news with my mother and me. Still groggy, I understood—more testing would reveal if I had a chronic condition called Crohn’s disease.
I finally got a diagnosis—but no real relief
Ten days later, I drank a chalky white liquid infused with a radioactive substance. The CT scan lit up, showing severe inflammation of the ilium (or small intestine) along with four areas of stenosis (or narrowing). I had Crohn’s disease.
Crohn’s disease causes inflammation and irritation and primarily affects the 20-foot-long small intestine, which handles most food digestion despite being folded up within the body. Inflammation may also crop up in the joints, eyes, and skin. As in my case, symptoms often begin gradually, then worsen over time, although remission can occur over weeks or years. More than half a million people have Crohn’s disease, which has become more common in the U.S. and often strikes those between ages 20 and 29.
I was given medications, but instead of reviving, I became even sicker as the freshman semester progressed. My abdominal pain and diarrhea increased, and flare-ups became daily events. I needed quick access to a bathroom at all times, so doing something with friends could quickly become nerve-wracking. At a line outside a bathroom, sometimes I’d have to cut the line and explain I have Crohn’s Disease. It was mortifying.
I felt different. Isolated. I spent a lot of time between 18–25 feeling sorry for myself, avoiding things, and missing out.
Upon returning home that summer, my pale face and gaunt frame shocked my mom. A day or two after arrival, my guts felt blocked. Intestinal obstruction is a common Crohn’s complication when intestinal walls thicken. As I spent four days in the hospital, doctors debated whether I needed surgery due to my heavily inflamed and possibly perforated intestinal tract.
It was scary to realize I was 18, and could have permanent damage in my GI tract. However, the inflammation responded well to antibiotics and quickly improved.
I learned to recognize messages my body sent. I deduced which foods caused inflammation; how slight twinges were the initial tremors that indicated a future earthquake of symptoms. Popcorn was out—the kernels embedded themselves in my intestinal folds and created inflammation. Something as innocuous as salad could spark twinges, then build to a bigger burn.
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My rocky college sophomore year led to pain flaring up before tests and medications suppressing my immune system until I came down with mononucleosis, along with severe hepatitis. After missing a month of school due to illness and reflecting on the mental toll my journey had inflicted, I switched to a psychology major. The next few years were a roller coaster, as stressful situations or the occasional seed or nut would cause flare-ups. The immune suppressants led to frequent colds and, at one point, 40 plantar warts.
How I turned a corner with my Crohn’s Disease
On Thanksgiving 2013, I began experiencing intense stomach and back pain. I thought I’d pulled a muscle, but then started vomiting. In the ER, imaging revealed I’d developed a fistula. Fistulas are another common Crohn’s complication, which results in a tunnel-like hole between inflamed intestinal walls. I underwent a multi-hour surgery to remove 10 centimeters of small intestine.
I’ve been in remission and off meds since. Learning how to listen to my body’s subtle changes puts me in a different relationship to my health, wellbeing and lifestyle. In 2017, I moved to Colorado, seeking a more relaxed pace. I’ve worked for several digital health startups, and in early 2021 I helped launch the start-up Lin Health, an app focused on chronic pain relief.
I eat a 90% plant-based diet, eating red meat just once annually. Yoga, movement, and meditation practices help me manage stress despite a demanding job. You can’t remove all the stress from your life, but you can react differently. Or, as a favorite Jon Kabat-Zinn quote says: “You can’t stop the waves, but you can learn to surf.”
I also realized I have to be my own advocate. What often gets recommended works for many people, but need to do what feels right to you. It’s harder to get someone to change their diet and lifestyle versus taking a pill. It can take time for new research to work itself into clinical practice, so I read new studies and relay them to my open-minded physician.
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While it can be comforting in that “sick” role, and have someone take care of you and an excuse to get out of things, it can become almost part of an identity. My healing journey has shown me that my approach and attitude can make a difference. I went from the initial shock of having a chronic illness without a cure, and spun it into a positive. The diagnosis has inspired much of my career and the work I do.
I’ve suffered, but I’m proud of how I’ve made it through to the other side.
Signs and symptoms of Crohn’s Disease
It’s still a mystery as to what kicks off Crohn’s disease—an autoimmune reaction, genetics, or other factors such as smoking. If you think you may be at risk for Crohn’s disease, speak with your physician. Common symptoms to watch out for include:
- Diarrhea
- Abdominal pain and cramping
- Weight loss
Other symptoms may include:
- Anemia
- Tiredness
- Fever
- Joint pain and soreness
- Nausea
- Appetite loss
- Eye redness or pain
- Red, sensitive bumps under the skin