Tales of Triumph

Discussing Crohn’s Disease – It’s Inevitable.

The biggest challenge I’ve faced with Crohn’s disease is talking about it with friends, family, and coworkers. They all know something is wrong and they want to show support, yet it’s the last thing I want to discuss. They ask me, “You look so thin; is everything okay? Why don’t you come out for dinner? You can’t drink beer – are you on some kind of a cleanse?” Like many patients with other diseases, I feel tired and unwell. All I want is for it to go away. None of the Crohn’s disease-related symptoms are pretty or pleasant to chat about.

To communicate with others, I make analogies to something that they can relate to – “I have Crohn’s disease. It’s like having the flu. You feel exhausted, antisocial, and unwell.” Or, “It’s like having food poisoning for weeks on end, multiple times a year. Your body rejects any food or drink that you ingest – even water sometimes! After a few days of having a flare, you begin to feel fatigued and grumpy.” Once my friends and family understand more about what it is I am facing, then I can spend less energy on explaining it and more energy on coping with the disease.


The Emotional Impact of Crohn’s Disease

Lately I’ve begun to realize the emotional wear and tear Crohn’s disease has on me. The physical effects are pretty clear: significant weight loss, exhaustion, fatigue, horrible cramps, flu-like achiness, dehydration – the list goes on. But it’s the emotional effects that creep up and begin to have a strong impact on my life: lack of desire to socialize or go out for some exercise, moodiness,  worrying about going on a vacation and having access to a washroom within minutes. That two-hour bus ride to the Mexican ruins doesn’t sound too appealing if your stomach is rumbling. Or how about being excited for days about a beautiful forecast for the weekend and how it will make for a great day at the beach, only to wake up on Saturday feeling physically horrible and having to stay home all day? That’s not exactly the way you want to relax and rejuvenate on the weekend.


How I Cope

I’m learning to slow down and rest more. I am also constantly finding new ways to keep my energy and interest levels up. I’ve become more flexible with planning my time and I’ve found new interests. If I can’t go out for lunch with a friend, then I catch up with them by phone on a day when I feel energized. If I can’t go for a workout, then there’s no need to sweat it; I make sure there’s a great book to dig into. If I know I can’t have an ice cream sundae for dessert, then I find something I like and can eat, like applesauce with cinnamon. Lately I’ve been making applesauce with different types of apples and devouring gallons of it. Yum! You can find joy in life, no matter how tough it gets. Your lifestyle will change because of this disease, but your passion for life doesn’t have to.

First published in the Inside Tract® newsletter issue 188 – 2013