I was 45 when I found out about the disease that was going to change my life. Until then, I had mostly lived without a significant personal struggle. As an adult, I had celebrated the birth of three healthy babies and enjoyed a career that I loved and worked in the book publishing world. My family was the core of my long marriage to my college friend.
But family tensions were brewing beneath the surface: my husband was building our house (our dream since college) and I was working extra hours to cover the costs while he took off from work. My father was diagnosed with cancer and, at the age of 41, I mourned one of my closest friends, a doctor, of breast cancer.
I masked the pain of emotional distress and an often upset stomach quite well, but when I was diagnosed with Crohn’s disease, an incurable bowel condition, I learned to deal with pain and fear. This included asking for help (I need help? Never!) And finding the courage to admit that I was sick and open my heart to healing.
Inflammatory bowel disease (IBD) is an umbrella term that includes both Crohn’s disease and ulcerative colitis. It is difficult to live and can affect a person at any age. Crohn’s disease is a disease of the small intestine, while ulcerative colitis affects the large intestine. These diseases are increasing exponentially, especially in developed countries where fast food and stress are becoming more common.
Like many Crohns, I had pain inside while looking good outside. This inequality can be very difficult. Also, it’s embarrassing to talk about diarrhea, gas, cramps, vomiting, and other digestive symptoms. Fortunately, people can find support and information through the Crohn’s and Colitis Foundation of America.
The problem was, I didn’t take care of myself: I often skipped meals, didn’t exercise, worked late at night after the kids went to bed, and made sure never to tell my clients about my frequent gastrointestinal thrusts. I was hiding the fact that I was sick every few weeks and always downplayed my illness.
After such a flare-up, I was admitted to our small town hospital. During my stay, my providers gave me fluids and potassium to make up for electrolytes lost from vomiting. The surgeon put me on a program called “Colon Rest” where I received nothing but ice chips by mouth until things calmed down. Later that week, a CAT scan showed that I actually had Crohn’s disease. There was no doubt about it.
From that day on, my life has changed forever. I denied – how could I be sick? I tried to cope with the stress in my life, but at some point it came back and I ended up in the hospital again a year later. This time I had to have an operation to remove a foot and a half from my large and small intestines.
On the day of my operation, my husband had to carry me out the door because I was too weak to walk (I hadn’t had a solid meal in over three weeks). I remember my teenage daughter, Emma, who looked at us with fear in her eyes and asked, “Will this be fatal?”
I was shocked. What if I had to wear an ostomy pouch for the rest of my life? What about that ugly vertical scar on my stomach?
Here’s what I’ve learned: Scars tell stories. Today I sometimes wear a bikini (the hell with that!).
Western medicine saved my life. My team at the Dartmouth Hitchcock IBD Center was amazing. Upon leaving the hospital, I found that relieving stress in my life is key to maintaining a healthy balance, as studies show that stress affects digestion. I added daily probiotics as a supplement, an easy way to support balance in the gut microbiome. Crohn’s disease is a difficult diagnosis, but achieving gut homeostasis was critical to balancing good and bad bacteria.
I decided to work with naturopath Jessica Black to write a book about living with Crohn’s disease and ulcerative colitis to help others with the disease. During my research, it occurred to me that a few years before I was diagnosed I had developed severe food poisoning from a fast food chicken sandwich. I believe the bacteria that invaded my intestines then created an inhospitable environment. The “good” and “bad” bacteria could no longer coexist in some sort of symbiotic equilibrium.
When I started taking care of my gut microbiome by following the specific carbohydrate diet, getting regular checkups from my doctor and naturopath at the IBD clinic, and adopting a daily holistic lifestyle, my quality of life improved. After my operation, I went from 119 pounds to 135 pounds. I got seven to eight hours of sleep. I woke up at 6:30 am, had tea, and worked on personal writing and poetry.
Today I follow the same routine. After writing, I head out for my daily walk (three to five miles over steep terrain), come back and do a quick yoga and meditation exercise, and make my traditional Irish steel oat breakfast. Only then do I enter the work scene in my home office. My morning regimen of yoga, exercise, and a healthy breakfast helps me stay strong and grounded.
I try to stick to my sleep / walking / yoga / meditation routine and prioritize my work-life balance. Weekends are sacred downtime with long hikes, dinner with my husband, a movie or potluck, or drinks with friends.
Even in these troubled times of COVID-19, I can still go for a walk in the woods or on the beach in autumn. I’ve found vitamin D in the eyes and skin to be incredibly helpful in boosting my immune system.
This is my Crohn’s story. Sharing through my writing has been a way to help those newly diagnosed with this lonely and debilitating disease or those who have a loved one to live with. By recording my health journey, I hope to particularly encourage women who have to juggle work, childcare, family, grocery shopping, etc. frequently while maintaining their health and dealing with stress.
After my book came out, a young mother from New Hampshire wrote to me saying that reading my book was “a light in the dark”. It was all worth it.
Dede Cummings is a poet, writer, book designer, and publisher. Her second collection of poems, The Meeting Place, was published by Salmon Poetry in Spring 2020. Dede lives in Vermont, where she designs books and runs the Green Writers Press. Please visit https://dedecummingsdesigns.com/ for more information.