Twitter Version: I was diagnosed with Crohn’s disease in January of 2016 after dealing with GI problems for as long as I could remember. This is my story.
A Viral Trigger?
It is really hard to pinpoint when my symptoms started, but I know they were much worse after contracting aseptic meningitis in fifth grade. I remember trying to eat pineapple at lunchtime and noticing all the mouth sores. Two days later, I was in band class and felt so sick I did not have the energy to stand up. I kept pretending to tie my shoes so I could sit on the floor and not have to stand up (silly me never went to the nurse, no matter how sick I was). I spent the next five days with a 105 degree fever, sores in my mouth all the way down my throat I could barely drink, and neck pain so severe I could not lift my head off a pillow. I also remember missing so much school from the fever that I took the thermometer out of my mouth early one morning to convince my mom I did not have a fever anymore (10 year old me also loved school). Ever since, I have been getting mouth sores, especially during times that my stomach symptoms are worse.
Diarrhea isn’t Normal?
Throughout middle school and high school, I had a lot of stomach aches and would get sick every time I ate at a restaurant. I thought diarrhea was normal, because it was my normal, until I realized it wasn’t. These “stomach attacks” became more frequent and really started interfering with my life. Countless times I had to leave the soccer field, and my parents should have given me away for the number of times we had to make emergency bathroom trips during car rides. I finally told my doctor about my symptoms, and she referred me to a GI doctor who scoped me and found minor inflammation in my ileum (small intestine), but not enough to call it Crohn’s in his opinion. Years later, two doctors have told me I should have been diagnosed and treated for Crohn’s at this point. The doctor thought I might have a milk protein allergy, so I came off all dairy and did feel better. The attacks were less frequent, but I was not perfect.
The College Years
My freshman year of college, I had infection after infection (recurrent strep, stomach bug 3x, fevers), until I came down with mononucleosis. Mono hit me hard with the fatigue, fevers, and enlarged spleen, and my friends described me as a walking ghost that whole semester. After recovering from mono, all of my “stomach attacks” that had once affected me for a couple hours to a day max were now affecting me for days. I went back to my GI doctor who thought removing gluten from my diet would help, and it did, but I was still having significant symptoms.
The fall semester of my junior year, I studied abroad in Ecuador, which was absolutely incredible, but I did catch parasites. Entamoeba histolytica. These little amoebas multiply rapidly and eat into the wall of the bowel causing ulcerations and bleeding. It took two rounds of medicine to finally test negative for the parasites, but six weeks after testing negative for amoebas, I was still testing positive for blood in my stool. The amoebas had done a lot of damage, but the GI doctor in Ecuador also suspected an inflammatory bowel disease, because the amoebas should not have been causing problems at that point.
When the Real Trouble Began
Fast forward to my senior year of college when everything spiraled downward. My stomach was worse than ever. I had severe night sweats every night to the point I ended up sleeping on towels and changing my clothes several times a night. My knees hurt so bad that even sitting in class or laying in bed was very uncomfortable. I quickly lost 17 lbs that I did not have to lose, and after many doctors appointments, tests, and procedures, I was first diagnosed with gastroparesis in December of 2015. Gastroparesis means “paralyzed stomach,” in which food does not pass through the stomach as quickly as it should. It is diagnosed by eating radioactive eggs and measuring the amount of radioactivity in the stomach every half hour. Two hours after eating, there was still 98% of the eggs in my stomach, and at four hours, it was still very delayed. Gastroparesis explained my nausea, but it did not explain all of my nasty intestinal troubles.
When I came home for winter break, I was scheduled for even more tests, and a colonoscopy revealed the Crohn’s disease in my ileum. While the diagnosis of a chronic disease can seem like a life-sentence for some, I was relieved because I finally knew what had been plaguing me all these years. I was not crazy, stress did not cause all my symptoms, and I knew if what plagued me had a name, my doctors and I could come up with a plan to treat it. I was put on steroids, and within a few weeks, I started feeling better.
Fast Forward to Now
A lot of steroids, immunosuppressants, bone marrow toxicity, an abnormal MRI, and more findings of Crohn’s in three places in my colon later, I started Humira and remained on it for over a year. Humira in addition to diet and lifestyle, really helped me heal and make it through the first year and a half of medical school.
Due to infections, I can no longer take traditional biologics or immunosuppressants, and am currently medication free. I have found great healing by following the Autoimmune Paleo diet which removes inflammatory grains, dairy, nuts, eggs, refined sugar, and nightshades in the elimination phase. I truly believe that removing inflammatory gluten and dairy from my diet years before my Crohn’s diagnosis helped keep the disease more at bay but also delayed the diagnosis. It is my hope in the future to keep healing on the Autoimmune Paleo diet and maintain remission with diet and lifestyle.
As a medical student, I hope my experiences will lead me to become a compassionate physician who treats the whole patient, not just the disease. My goal is to empower my patients to take action and live happy, healthy, fulfilling lives regardless of their diagnosis.