I flop around in bed. I toss the covers aside, then pull them over me again, and then toss them off again. My asshole itches and burns, a common malady for folks like me who live with a pelvic pouch. Pressure builds around my pelvis as my pouch fills with gas and stool. I want to let out a fart, but I’m scared it’ll come with a muddy surprise. I lie on my back, clench my teeth, and ride out the pain. I close my eyes.
The pressure builds again around my pelvis and stirs me awake. My butthole still burns. I roll onto my left side and my abdomen gurgles and groans. I feel like I have to shit, but I try to hold it in. A burst of gas whispers as it escapes from my ass. I curl into a ball and pull the covers over me.
More gurgles from my J-pouch, another urge to go, and I’m awake again. Fuck it, I might as well just go to the bathroom and empty the pouch. I fling the covers aside, open my creaky bedroom door and hurry down the carpeted hallway to the bathroom. I slide my boxer briefs down, take a seat on the toilet, and push out pieces of popcorn chicken-sized stool. I rip a huge fart that brings a few bits of stool along for the ride into the toilet bowl.
It’s difficult to completely empty a J-pouch in one shot, so I stay seated on the toilet, stretch my legs out in front of me, and wait to see if any more shit will work its way out. A few more dregs fall out and I squirt water from my handheld bidet onto my backside. I pat the area dry with toilet paper, pull up my underpants, and wash my hands.
I walk back to my bedroom, lie down in bed on my right side, and again feel pressure in my pelvis. I whimper and wait for the discomfort to pass.
I roll onto my right side, then my left, then onto my back. I scratch the skin beneath the six-inch scar where my ostomy used to be. I’m tired, but I can’t fall asleep. I reach over to my bedside table and turn on my phone. The glowing screen lights up a dark corner of my bedroom. I aimlessly scroll through my Twitter feed and stop on a tweet from my friend Andrea:
Last week, I wrote about the #GetYourBellyOut campaign, which at the time had started gaining momentum primarily in the United Kingdom. It encourages people with or without an inflammatory bowel disease to snap a photo of their abdomen and post it on social media. If the poster so chooses, he or she can present proof of a monetary contribution to Crohn’s and Colitis UK alongside the midsection selfie. I happily put a photo of my hairy, scarred, and disfigured belly on my Twitter account, and promptly received messages of gratitude and support. It warmed by belly, and thankfully not in the way ulcerative colitis did.
Did everyone involved in the Get Your Belly Out campaign go too far by posting images of scars and bloated abdomens and ostomy bags? Did we somehow fetishize the diseases that have taken such a massive toll on our lives?
No, Johnny, we did not.
We simply took it upon ourselves to be closet victims no more. We took it upon ourselves to let people with an IBD know that they have empathetic allies. We took it upon ourselves to let people without an IBD know that we could use some help generating money for research and treatment, because, as the images show, this shit is serious.
Why do cancer charities raise millions of dollars every year? Because you’d be hard pressed to find a person who hasn’t heard of cancer. Large sections of the public have simply never heard of Crohn’s disease or ulcerative colitis, and they have absolutely no idea how devastating these diseases can be. That remains one of the biggest impediments to generating money for IBD research. If we keep our suffering private, we keep suffering. Sorry, Johnny, but that ain’t gonna happen.
I started writing about my experience with ulcerative colitis in 2010 because I wanted people to know what the disease was, and what it’s like to struggle as a result of it. I’ve never skimped on the details, from singed skin to soiled underwear, because people can gain a better understanding of something when they know the details. If you think this blog post was graphic, you should read my book. Really. You should. It’s available on Amazon. Buy it.
In terms of generating online buzz and encouraging people with an IBD to go public, Get Your Belly Out has been the most successful IBD awareness campaign I’ve ever seen. So whether or not you have an IBD, I hope you’ll take part in it if you haven’t already. Let’s keep it going and keep it growing, and if it’s too much for the prudish eyes of Johnny Ikon or anyone else, they’re free to look away.
Image via WeirdNutDaily