In 2011, I had what was probably my first Crohn’s flare, and the worst pain I’d ever endured. This happened twice more over the next three months, but I passed it all off as a food sensitivity and started an elimination diet. Even then, I often had discomfort and loud noises after eating…my gut was getting in the way of living. I flaked on friends and family, avoided dating, missed school and work, and isolated myself with Netflix and alcohol. I knew what foods were safe for me to consume, but would often give in to cravings. Food, TV, and alcohol allowed me to avoid reality.
Over the next few years I went to GI doctors, got stool, blood, and food sensitivity tests, consulted with a Traditional Chinese Medicine practitioner, brain specialist, psychiatrist, read endless books, etc. The TCM practitioner guessed that I had Leaky Gut Syndrome, but I still didn’t have a diagnosis. Armed with supplements and an endless list of foods I couldn’t eat, I went home with a half-hearted approach to my healing. I didn’t want to take my health seriously, because that would mean that there was something seriously wrong with me.
Fast forward to 2017. My anxiety about pain, noises, and bloating had ruled my life for over six years. I was depressed and fearful about the future. Anyone who knows me knows I am empathetic, passionate, and have an overwhelming desire to fix. And I believe my decline into the life-threatening flare I had this summer began during the 2016 presidential election. 2017 has been a year of tragedy, oppression, and uncertainty for all of us, and my concern for social justice and the wellbeing of humanity contributed exponentially to the stress and sadness that manifested in my physical body. Though many are genetically pre-disposed to Crohn’s (myself included), I learned that healing and remission would be impossible if I didn’t care for my emotional health.
In July, I was barely managing 800 calories a day. This turned into 500, then 300. By September, I was eating just less than 300 calories a day and had dropped 25lbs in two and a half months. I resigned from a job I had just started to stay home and attempt to get better. Thankfully, a functional medicine doctor said I had Crohn's Disease within five minutes of our consultation and started me on a natural supplement and diet regime. After going to a GI doctor for official tests and a CT scan, I was diagnosed with Crohn’s Disease in mid-September. They wanted me to start taking a steroid, but I still wanted to try and heal using natural methods. However, I began retaining fluid and my whole body swelled due to malnourishment. I could barely move, I couldn’t swallow supplements or food, and my brain was in a thick fog. My mom said I threw up the entire day before going to the hospital—which I don’t remember at all. My body and brain were now operating as if I had an eating disorder. I was afraid of food.
On October 4, 2017, I couldn’t see how I was going to get better on my own and begged to go to the hospital. My parents were skeptical, but I think we intuitively knew that I needed help to be just stay alive. I proceeded to get scans, x-rays, an MRI, blood tests, morphine, TPN, steroids, and antibiotics for a UTI. I experienced continued swelling (my legs were like tree trunks!), and increased buildup of fluid around the heart that made it really hard to breath. When I was finally able to start medications to release all the fluid, I reached my lowest weight of 75lbs at a height of 5’3 (-40lbs total, 1/3 of my body weight). It’s a miracle I survived without any permanent organ damage, or worse.
However, the mental and emotional healing I experienced is why I am so grateful now. Have you ever had the lonely thought that if you died, no one would care…no one would come to your funeral? I always had an insecurity that I didn’t matter and no one really cared even if they said they did. When I began to get really sick, I decided I couldn’t go through this alone and started sharing on social media to ask for support and prayer. The outpouring of messages from not just close friends and family, but people I hadn’t connected with in years, was what catalyzed my healing, both physical and emotional. I realized for the first time how loved and cared for I am. I could no longer hide behind the lie that I didn’t matter. I could finally open my heart to release the love and light I had always felt I had, but couldn’t because my soul was so blocked (insert Crohnie humor here) by depression, anxiety, and fear. Ah! The parallels.
Remember the fluid around my heart and labored breathing? Sitting up to go to the bathroom felt like running a marathon. Well, I had what is called Takotsubo Syndrome—Broken Heart Disease—and is common in Japanese women after they experience intense emotional stress. I had. A broken. Heart. My inability to love myself or manage my emotions in positive ways led to a life-threatening illness and three-week hospital stay.
NOW, I am feeling better than I have in years despite the meds I still have to take. Prednisone anyone? I am managing my emotions through journaling, therapy, yoga, and FEELING my feelings. Whenever I feel sick or sad, I allow myself to cry, scream, vent,…and feel the sensation of inflammation and physical pain leaving my body. Emotions are not the enemy, suppressing them is.
Some of us have more severe cases of Crohn’s and Colitis than others, and we all need the help of doctors, naturopaths, therapists, specialists, etc. A holistic approach to healing includes addressing lifestyle, diet, environment, genetics, and emotion. Remission or not, this is a lifelong journey for all of us and the work we do to love ourselves will never end. But I take this as a blessing in disguise. Being diagnosed with an autoimmune disease forced me to make a choice: take proactive responsibility for my health and happiness, or remain in complacent victimhood. I finally chose the former and am truly happy for the first time in my life.