I was a 24-year old doctoral student when I was first diagnosed with inflammatory bowel disease. At the time I was driven, perfectionistic, and proud of my intellect. I settled for nothing less than A’s on my tests and papers. I pushed myself to work hard even when I was sick with a flare. And I wouldn’t let go of any of my extra-curricular activities, including volunteer work.
After I earned my masters’ degree, I took a leave of absence and went to France with my boyfriend at the time. I experienced a long IBD flare while I was there, and after several months I decided to go on a meditation retreat at a meditation center near Bordeaux. There I started to feel more calm and peaceful. I stayed at the meditation center for almost six weeks and by the time I left, my mood and physical well-being had improved substantially.
I moved back to the U.S. after my relationship with my French boyfriend ended. I realized that I needed to have health insurance and I found work in Washington, D.C. I continued to meditate regularly, but meditation was not enough to keep me out of the hospital. In early 2001 I barely survived a severe flare of IBD. I was on short-term disability for several months following a two-week hospitalization, and I stayed with my parents in Indiana during that time. The corticosteroid medicines that I took seemed to exacerbate every feeling I had and I struggled with deep depression during my recovery.
I eventually went back to Washington D.C. and started working again. My old habits of perfectionism and workaholism came back in full force. I worked on Capitol Hill as a public health policy associate for a non-profit association that aimed to advance public health initiatives for people with disabilities, youth, and the general population. I got carried away with my work. Sometimes I even brought a laptop to the hospital so that I could work there. I still hadn’t learned to listen to my body.
A surgical team removed my entire colon in March of 2002. I had high hopes of long-term remission, but suffered from a severe IBD flare in my rectum less than a year after the surgery. At that point I realized that no one else was going to get me out of the vicious cycle I seemed to be caught in. I had to find my own way out. I asked my doctor if I could go on a long-term immunosuppressant, 6MP (I was seriously allergic to remicade). Three months after I went on 6MP I began to experience fewer IBD symptoms.
But my story doesn’t end there.
I continued to have mild to moderate flares of IBD for a couple of years, even on 6MP. I began to notice patterns. When I worked too hard and took things personally, my symptoms seemed to get worse. Researchers know that stress does not cause IBD, but it can exacerbate symptoms. There is even some evidence of higher levels of nervous system dysfunction among people with IBD than “healthy” people (I blame the corticosteroids!).
I decided that I was going to do everything I could to help my nervous system calm down. That sometimes meant quitting a stressful job and saying to others, “No, sorry I can’t help you.” I had to tune into my body and listen closely to its signals. What kinds of situations stressed me out the most? I decided that deadlines were not good for my gut. Of course there are only so many deadlines one can avoid in modern society. I planned ahead so that I wouldn’t feel so stressed when a deadline came. I practiced sitting, walking, and eating meditation regularly. And I took part in activities that helped me to really “be” in my body, like dance and Qigong.
I didn’t find the magic bullet cure that I had hoped for in the early years of living with IBD. But I lived a lifestyle that made me feel whole and full of vitality. I found out which foods triggered abdominal pain and avoided those foods as much as possible (it’s a long list actually!). I started taking high-potency probiotics that I believe helped my gut recover. I asked my doctor to test my levels of certain vitamins and minerals and we discovered some deficiencies, including vitamin D, so I took supplements. And I continued to avoid highly stressful situations or at least practice mindfulness when I encountered them.
I’ve now been in remission for over six years. My physician has found absolutely no evidence of IBD in my intestines. They look completely normal, and I’m currently in my second trimester of pregnancy. I’m glad that my body has recovered fully, but I’ll never forget the lessons that I learned during the years in which I lived with severe IBD.
I learned to let go of expectations for myself and for others.
I learned that compassion and love are more valuable than achievements and praise.
I learned that I could never be perfect, but I could become whole.
For me, true healing means lovingly accepting all of who I am and seeing how deeply connected I am to the pulse of life on Earth.
Erica
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