The Adventurous Life I Wouldn’t Be Living Without Crohn’s Disease


I have Crohn’s disease. It has been in remission for 12 years, but from a year after my diagnosis in 1998 to August 2002, it was like a wildfire wreaking havoc on my body.

I spent three years, from the summer of 1999 after my second son was born until my major surgery in 2002, fighting for my life. I didn’t realize it at the time. It snuck up on me in little increments, and before I knew it it had overtaken my body. Specifically, my large intestine. I was on a severely restricted diet and took handfuls of medication and vitamins. I was constantly in doctor’s offices or emergency rooms. I had raging fevers, higher than you would think a person could survive. Higher than the kind that send parents into panics. It hit 106 degrees. I had a racing heart even at rest, had steroid-induced cataracts, lost partial vision in my eyes from loss of blood flow to my optic nerve, and fought a staph infection in my leg for a week in the hospital. I never had the stomach pains that many people with Crohn’s do, but I probably spent more time in the bathroom than the average person will spend in their lives. My weight went down to 88 pounds.

I fought having the surgery to remove my colon for a long time. I was too young to have an ostomy bag. I was only in my early 30s. How could I deal with that for my entire life? I finally gave in to myself — it was my choice. I wanted to be there for my boys, and I was just too ill to be the mom I wanted to be. When the surgeon went in for my pre-op colonoscopy, he couldn’t even complete it due to the swelling. I had put the procedure off, and if it had been done sooner I’m sure they would have told me how dire the circumstances were, but I’m glad I made the decision myself. I’m glad I did it for the love of my family. In the end, it would turn out to be so much more than that.

That surgery saved my life. Literally. It was that bad. I can now eat anything I want, I take no medication for Crohn’s, and am back to a more-than-healthy weight. And I am living. Living a life I wouldn’t be, if not for said surgery. I am living a life I would not be, if not for Crohn’s disease.

I have learned to appreciate the little things that so many take for granted. The blue sky, white clouds, green trees. The contrast between them, and the beauty of it. The breeze. The birds. The smell of fresh air.

I have learned not to take my family and friends for granted, and to catch myself when I think that I am. To take care of them, as they took care of me. To love them with everything I have. To look to them for strength when I need it, and to give strength and support to them when they do.

I have traveled farther out of my comfort zone than I ever thought I would. If not for Crohn’s we would not have traveled abroad, adopted our daughter or lived in China. Before Crohn’s my life was ruled by fear of the unknown — after Crohn’s, by the spirit of adventure and a love of life.

the great wall of china
The Great Wall of China, visited by Livy.

I have walked on the Great Wall of China, and stood before the first emperor’s Terracotta Army. I have trekked through the rainforest in Langkawi, Malaysia, and floated through the mangroves. I have basked in the hope of longevity from the waterfall of the Pure Water Temple in Kyoto, Japan, and walked the nightingale floors of Nijo Castle. I have explored the streets of Ho Chi Minh City and traveled through the Mekong Delta. I have walked the beautiful beaches of Vietnam. I have zip-lined through the trees in Thailand and fed an elephant bananas — right into that giant mouth. I have been to the Demilitarized Zone in South Korea, and I have stood in North Korea, in the Military Armistice Commission building.

Through my Crohn’s disease I learned how to live. How to love. How to learn. But I’m not done. I have so much more to see, so much more to experience, so much more to love, thanks to my Crohn’s disease.

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