There’s just no pleasing people

haters2:25 a.m.

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.

3:08 a.m.

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.

3:30 a.m.

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.

4:28 a.m.

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

Advertisements

About rasheedclarke

Award-winning author. Marathon runner. Exceptional dresser. I'd like to be all those things.

2 comments

  1. Wendy

    Hi Rasheed, I read your blog with heartfelt sympathy and knowing all too well the feelings you are going through. I had UC fro aged 23-30 years old and was really poorly. Being kept in hospital with my two young children at home. I had 32 pints of blood over test time. Then I had the surgery for J. Pouch in 1988. It saved my life actually as I was very thin and could not get better at all. Anyway I ama 56 year young lady who had her j.pouch surgery and it all went well. My hubby and I have just emigrated to New Zealand to be near our daughter and three lovely grandchildren three months ago.i have the same feelings as you through the night. Tossing and turning trying to put off going to the loo. But eventually you have to go, you think you are finished stand up, cleN up, only to have to go again! Then back to bed trying not to move too much or you start the same process again. The gurgling, groaning, pain of wind moving around, daring not to let it escape, just in case. But you wake up too much to get back to sleep and lie in the long lonely hours, trying not to didturb your loved one who happily snores away making you more annoyed to be awake and lonely!! I have started to take sleeping tablets when things are too bad and I can’t get to sleep. Don’t know if this is a good idea but anything for a few hours of decent sleep. And we wonder why we are so tired during the day. I get scared that people think I am lazy if I drop off to sleep during the evening, must not let this get to me I know. I am usually in bed by 9.30, ready for work or whatever the next day may bring.
    Thank you for putting into words how I feel sometimes, sitting on the bloody loo for the umpteenth time. I wondered the other evening, after having an earthquake only hors before, what if I was on the loo?? What would I do???
    Best wishes to you, here’s to the next 26 years with my j.pouch.💜

  2. Wendy

    Forgot to tell you the main point. COLOPLAST COMFEEL BARRIER CREAM is the best cream for your “irritation” it is very soothing, the best on market.
    Good luck!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: