I have always enjoyed the mysteries that are discovered in books. Nancy Drew, Hardy Boys, and other whodunit detective books. I had no idea that as an adult, I would be delving into the mysteries of my own body.
It was simple to ignore the early warning signals. Between the ages of 8 and 18, I swam competitively and in good health for up to three hours every day. Periodically, I would experience stomach pains, but they were simple to ignore—perhaps I had waited too long to eat, hadn’t consumed enough protein, or had gone swimming too soon after a meal.
At the age of 14, tiredness episodes and joint pain started to appear. Doctors initially thought I might have mononucleosis, a viral condition. Testing showed that I didn’t have it, but they did find that my blood had an increased level of inflammatory activity. My mother was anxious even though my symptoms subsided. Because I could tolerate discomfort well, I frequently played down problems.
In 2004 I enrolled at Duke University to pursue a pre-medical degree. It was significantly greater academic pressure than I had ever known, and what had previously been unusual quickly became into the norm. When I tried to study three or four days before an exam, severe stomach problems overcame me. the test, the symptoms started to fade. But as the subsequent exam drew near, the cycle would start over.
After that, I began to experience cramps before my period or right after eating, along with new signs and symptoms like diarrhea and constipation. Any pain or urgency got worse under stress.
Is it a cyst? Lactose intolerance?
My lower right abdomen started to hurt all day as the second semester of my time at Duke University got underway. Due to my concern for appendicitis, I visited the campus health clinic. An ovarian cyst and an unexplained fluid in my right lower intestinal quadrant were detected by the clinic’s ultrasound. Could the cause be an ovarian cyst?
I browsed well-known medical websites. The fact that the cramps started at different times during my period, which is unusual for a cyst, made it seem impossible that the cyst could cause such an extreme sensation. White blood cell, platelet, and inflammatory marker levels were abnormally elevated in the lab results.
My childhood pediatrician was consulted by my mother and me and mentioned that I had lactose intolerance as a baby. Could this be the reason? For hints, I underwent tests for lactose sensitivity, celiac disease, a variety of STDs, thyroid disorders, and other conditions. Nothing.
But because of that mysterious fluid, elevated inflammatory markers, and my joint pain, my pediatrician advised a colonoscopy before I travelled back to Connecticut for spring break.
The doctor gave my mother and I depressing news when I awoke from sedation in the recovery room. I was still groggy when I realized that additional testing would determine whether I had Crohn’s disease, a chronic condition.
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I finally got a diagnosis—but no real relief
Ten days later, I drank a radioactively-infused chalky white liquid. Four areas of stenosis and severe ilium (or small intestine) inflammation were visible on the CT scan. I was dealing with Crohn’s.
The 20-foot-long small intestine, which performs the majority of food digestion despite being folded up within the body, is primarily affected by Crohn’s disease, which causes inflammation and irritation. Additionally, the skin, eyes, and joints are susceptible to inflammation. As in my case, symptoms frequently appear gradually before getting worse over time, though remission can take weeks or years to happen. Crohn’s disease, which has increased in prevalence in the United States and frequently affects people between the ages of 20 and 29, affects more than 500,000 people.
I was given medication, but as the first semester went on, I got worse rather than better. My diarrhea and abdominal pain got worse, and I started having flare-ups every day. Going out with friends could easily turn tense for me because I always needed quick access to a bathroom. I occasionally had to cut people in line to use the restroom and explain that I have Crohn’s disease. It was disgusting.
I experienced a shift. Isolated. Between the ages of 18 and 25, I was very self-centered, avoided situations, and missed out on things.
My mom was shocked when I arrived home that summer with a pale face and a lanky frame. A day or two after arriving, I experienced gut blockage. When intestinal walls thicken, gastrointestinal obstruction is a common Crohn’s disease complication. Due to my severely inflamed and potentially perforated intestinal tract, doctors debated whether I needed surgery during the four days that I spent in the hospital.
The thought that I might have permanent damage to my GI tract at age 18 was unsettling. Antibiotics worked well, though, and the inflammation quickly subsided.
I grew to understand the signals my body sent. I discovered which foods induced inflammation and how minute tremors were the first signs of an impending earthquake of symptoms. Popcorn wasn’t an option because the kernels lodged in my intestinal folds and triggered inflammation. Even something innocent like salad has the potential to cause minor burns that later become more severe.
My immune system was suppressed by medication during my difficult sophomore year of college, which caused pain to flare up before exams and led to me contracting mononucleosis and severe hepatitis. I changed my major to psychology after missing a month of school due to illness and thinking about the psychological damage my journey had caused. The following few years were turbulent as challenging circumstances or the occasional seed or nut would set off flare-ups. 40 plantar warts appeared at one point as a result of the immune suppressants’ frequent colds.
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How I turned a corner with my Crohn’s Disease?
I started experiencing severe stomach and back pain on Thanksgiving 2013. I initially believed I had pulled a muscle before starting to throw up. Imaging in the ER showed that I had a fistula. Another typical Crohn’s disease complication is fistulas, which are holes that form between inflamed intestinal walls. I had a several-hour surgery to have 10 centimetres of my small intestine removed.
Since then, I’ve been in remission and am drug-free. My relationship to my health, wellbeing, and way of life changes as a result of learning to pay attention to my body’s subtle changes. I relocated to Colorado in 2017 in search of a slower pace. I’ve worked for a number of digital health startups, and in early 2021 I contributed to the launch of Lin Health, a company that created an app for managing chronic pain.
I only eat red meat once a year and consume a diet that is 90% plant-based. Despite having a demanding job, practising yoga, movement, and meditation helps me reduce stress. While you can’t completely eliminate stress from your life, you can change how you respond to it. Or, to paraphrase a well-known quote from Jon Kabat-Zinn, “You can’t stop the waves, but you can learn to surf.”
I also understood that I needed to stand up for myself. The advice that is frequently given works for many people, but you should always follow your gut feeling. Contrary to taking a pill, changing someone’s diet and lifestyle is more difficult. I read new studies and share them with my understanding doctor because it can take some time for new research to be incorporated into clinical practice.
While having someone take care of you and using being “sick” as an excuse to avoid obligations can be comforting, it can also almost become a part of one’s identity. My path to healing has demonstrated to me the power of my approach and attitude. I turned my chronic illness, which has no known cure, from the initial shock I felt into a positive. My career and a lot of the work I do are heavily influenced by the diagnosis.
Signs and symptoms of Crohn’s Disease
What triggers Crohn’s disease—an autoimmune response, genetics, or other factors like smoking—remains a mystery. Consult your doctor if you believe you may be at risk for Crohn’s disease. Common signs to be on the lookout 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