“Are you a runner?”
This is a question I’ve heard multiple times in my life, and while I enjoy running (and health and fitness in general), I haven’t been able to run for about 15 years because of my UC. My body has some weird reaction to it. I break out in painful, itchy hives. So, no. I’m not a runner.
In fact, any type of vigorous exercise these days triggers a worse flare. I’m unable to carry on with normal activities for several days after as a result. I do appreciate the compliment, but it’s also an uncomfortable reminder of how invisible this illness is. The healthier you look on the outside, the harder it is to comprehend how you’re really feeling.
My name is Kristie Duke, and I live in Louisville, Kentucky. My UC struggles began in 2008 after traveling out of the country to Peru. My Ulcerative Colitis (back then Ulcerative Proctitis) was managed well with a single round of steroids and the occasional suppository to decrease inflammation ‘down there’. After contracting pneumonia in Thailand in 2018, my flare worsened, and worsened with every colonoscopy (likely due to the antibiotics needed to treat the pneumonia). That was until I ended up 96 pounds and unable to keep any food or liquid down at all. I was hospitalized and given IV steroids, but returned home still feeling like I was being poisoned every time I tried to eat.
My doctors put me on oral steroids 3 times, biologics like Humira, Uceris, and Xeljanz. I received IV infusions every month called Entyvio and 2 infusions to treat anemia from the blood loss. Today, I am on Stelara injections with only some improvement.
The biggest struggle is people constantly tell me I look great. Not great like, beautiful-great. But like “healthy”-great. My outsides don’t match my insides. The invisibility of my UC was really shown to me at work. Ive been at my current workplace for a year. I cried one day in because of the pain and my boss said “I didn’t realize you have pain.” It was a punch to the gut; that even the people closest to you can never really understand what you go through. They never see what goes on in your home when you’re finally comfortable enough to take a few bites of food. They don’t see the carnage that happens when you’re alone in the bathroom. They don’t see the skyrocketed numbers on your medical labs showing how lethargic you are. They don’t see the anxiety every time you step into your car or enter a place where you haven’t located the restroom yet. They see that you’ve gained 10 pounds – so that must mean we’re “all clear,” right?
As of two years fighting this awful flare, I have a surgical consult scheduled this year to assess whether or not I should move forward with a colectomy (removal of my colon). For some people, keeping their organs safe and inside trumps living life with a bag. For me, I’m not really living unless I’m able to hike the Grand Canyon, travel the world, go cycling, camping and exploring. I want to feel like ME again, bag attached or not. And for anybody fighting this awful disease, I want to say – we see you. And I hope that we can continue to raise awareness so others see you, too.
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