How Humor Helps Me Navigate Life With Crohn's Disease
When I was 12 I was diagnosed with Crohn’s disease. At age 17, I was given an ileostomy due to being very ill. After recovering from surgery, I joined the local ostomy support chapter to learn how to live a “normal life” wearing a piece of Tupperware attached to a “shake and bake bag.” Members swapped hints and war stories, speakers came in discussing body image and how to look your best when not feeling well and my all-time favorite, the humor therapist. She talked about finding humor even when faced with life’s toughest hurdles.
I took her suggestions to heart and learned to find humor in whatever I was faced with. If I had a surgery scheduled, I’d write “God bless Dr. B. & the OR staff” on my bag or “Miss me?” if I came in for another operation. When they’d come for me in the gurney, I’d say, “I have to cancel. I’m having a bad case of morning breath,” or “I’m having a bad hair day, can you come back when I’m done fixing it?” or if I was waiting for pain meds to kick in, I’d write poems based upon my adventures of what I was currently going through. After 30 years, I have a pretty good collection now.
At the age of 29, I was very blessed to have married an amazing man who had a sense of humor, was supportive with my ostomy volunteer work and took care of me when I wasn’t feeling well due to a Crohn’s flare or recovering from another surgery. It was around the early years of our marriage that I started collecting all kinds of teddy bears including Boyd’s bears because who else can you tell your secrets to or hug when you’re not feeling that well?
We’ve endured many adventures together including my ER visits, surgeries, a stroke at the age of 37 (due to MTHFR I’d later find out), emergency surgery on my right leg due to another clot that was over 12 inches long, in which a stent was put in my upper thigh area and times where I’d be extremely fatigued due to mitochondrial disease. On my good days, I can be found dancing in the family room with the music cranked while I’m cleaning and my basset hound looking at me as if to say, “You’re off your meds again, aren’t you?,” making greeting cards from scratch, scrapbooking, reading, hanging with friends or even talking to patients who were referred to me by my current and past GI surgeons.
My one piece of advice I always give is that if a person can’t accept you for yourself, let them go. It is their loss, not yours. And if you come across as not revolving your life around the ileostomy but being fine with it, others will feel comfortable around you and see it as a sign of strength. My husband knew about mine when we were first dating (I had given him an article I had written for the Ostomy Quarterly) and I encouraged him to ask questions if he had any. My biggest surprise was when he asked if he could attend the local support meetings with me to educate himself to get a better understanding of what I was going through. I knew he was a keeper after this.
My health problems have given me a new perspective on life. They’ve taught me to never take anything or anyone for granted and to take joy in even the simplest of things, such as a good hair day, looking for shooting stars or watching fireflies dance in my backyard. We’ll be celebrating our 20th anniversary this October. I’ve always said to my husband that being married to me will never be a dull moment. Whatever the future holds for us, I say bring it. We’re in this together.
We want to hear your story. Become a Mighty contributor here.