Living with Pain: Collagenous Colitis and the Devil

Living with Pain: Collagenous Colitis and the Devil

It always comes with little warning, but even when I recognize the Klaxon has sounded it may already be too late. And too late is out of the question.

It’s not really a “question” though — it’s a condition over which I have no control, a condition not often referred to in polite society.

It started about 10 years ago. No warning, no outlier cramps, no twinges, just an onslaught of immediacy: sudden, crashing diarrhea. Not in a few minutes, but now! And not just that first day, but everyday for the next 35 days, before I hauled myself off to a gastroenterologist.

His diagnosis was Collagenous Colitis (CC). No cure and very little relief other than chewable Pepto Bismol. Ever chewed Pepto Bismol? Like chewing chalk with a desert dry mouth.

Here’s the horror: Let’s say you’ve gone to a play 20 minutes from home by car. Worse, let’s say 20 minutes by subway and El. I can see you squirming now — and you should be. You’ve just left the theatre and you feel the sudden panic laden twinge deep in your bowels.

Oh God, can I get back in the theatre? Try to outdrive this thing and get home before the explosion?

Panicked, you chose to drive, not letting traffic laws interfere. Red lights? F*** that! You look both ways for cars, pedestrians, or a cop who could detain you. No obstructions? Down the street you barrel, swearing vociferously at any impediment, human or otherwise that thwarts your progress.

But it always happens, doesn’t it? A bus stalled in the intersection, emergency vehicles at a fire, or a traffic light stuck on red. It doesn’t matter what, just when you need no obstructions, one descends from nowhere.

Devil_GoatThe grasping, twisting cramps in your intestines make a bet with you: I bet I explode all over you before the elevator comes to the garage even if you do get home on time, it sneers. And you know it’s true, but you are “hell bent for leather” and nothing can stop you.

But traffic light after traffic light goes red just as you reach them, and inevitably there are one or two cars ahead of you blocking your headlong rush to beat the devil.

Oh, thank the gods, the pressure backs off, the insistence stands down, takes a seat. Your hope of beating this thing is renewed. The light changes and while the demon is still there in the folds of your ruined intestines, you have hope. You mash the throttle, the turbo engages and whines as it unspools that extra kick you need to swerve into the oncoming lane, and blow the doors off the poor civilians thwarting your advance.

You have hope. Yeah, you’re going to make it.

Now only three blocks from your high rise, your intestines, the devil incarnate, knows how close you are to making it on time. And much as you feared, the cramps kick into high gear while he who shall not be named laughs from the gutter of your bowels about to turn themselves inside out. He’s going to make this hell.

The devil whispers in your ear that, yeah, he’ll let you get home and parked. You’ll also make it onto the elevator, but to your horror there will be three other people on it, too. And he whispers even louder that he’ll explode noxiously before any of them can get off and away from you!

You’re screwed and you know it.

You pull off the street into your garage and hope rekindles, until the automatic gate doesn’t recognize your gizmo to let the gate swing open. You pound the steering wheel bellowing a stream of colorful invective. The devil laughs louder and harder below your belt.

“I’m winning,” he whispers acidly.

After agonizing seconds the arm sweeps up and you barrel through, swinging to the left, to the left, to the left as you wind ever farther down the ramp to the bottom floor. You slide with screeching tires into your parking slot, bolt out the door and run as fast as your damaged joints allow as the pressure becomes unbearably insistent. You hammer the elevator call button and wait, pacing back and forth wondering what you’ll do if it doesn’t rescue you NOW.

Yeah, this is the scene that goes through your mind as you agonize over the times you didn’t make it; as you contemplate going out to the doctor, the store, maybe to a ball game or, if the stars are aligned, to the theatre again.

When you have have CC there is no assurance that the devil, no matter how well you might feel, isn’t awaiting you out there, interminably far from a toilet or even just a tree in the dark.

You start checking your intestines hours before departing for the slightest rumble of gas, the most innocuous twinge deep in the horrid recesses. You watch, you wait, you calculate.

This is similar to wondering if your body will or won’t assault you with mindless pain if you decide to go out to do something. But CC is of a different order. Should you really not make it while trapped on the el or subway, the humiliation and disgust with your body might be enough to hurl yourself onto the third rail. In reality, at least in my reality, I’d prefer the third rail over letting the devil denounce me in a closed public space.

It isn’t just minutely surveying your body in preparation to leave, it’s the mapping out in you mind where you might be able to relieve yourself if the devil can’t be held off.

This happens every day as I try to decide if I can go for my hour long walk with my furry pal, Dylan. Inevitably during the week there is a twinge, a thought, a faint snicker from the devil that has me turning around and heading home. My life is ruled by this. It’s a constant calculation that I could live without, but that’s no longer in the cards.

I have been turned away from restaurants and hospitals in my time of excruciating need. It’s a private, sometimes public hell that we with this devil face hourly in our lives.

I now carry an official looking card identifying me as someone with an illness that requires restaurants and other shops to allow me the use of their restrooms. It’s a ploy, really.

I wish it had the imprimatur of law. You might wish it, too.

Mark Maginn

Mark Maginn

Mark Maginn lives in Chicago where he is a poet, writer and social justice activist. Mark suffers from chronic pain and was a longtime volunteer with the American Pain Foundation. His blog “Left Eye Blind” can be found here.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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There are 4 comments for this article
  1. Shelia at 5:29 pm

    Mark,

    I know that devil very well. What scares me the most, people do not understand why you can’t go to dinner or a movie or out for drinks. Why you do not attended family weddings, reunions ect….
    I am sorry that you live with this devil as well.
    Wishing you all the best

    Shelia Purcell

  2. mark maginn at 1:30 pm

    Thank you for your kind words & encouragement, Crystal.

    Bruce, I know what you mean, like any form of colitis it’s a twenty four hour demon. It happened again early this morning. When I can, I walk for about an hour over 4 miles with my furry pal, Dylan. I always look for signs of imminent attack before going. Today was diabolical. At the point I was furthest from home, 30 minutes & 2 miles, the faint, but oh so familiar pressure raised its head. I turned and headed for home as the cramping was really painful. As I neared home I new I was in a race with the devil. & the devil knows that when your close its time to wring the neck of your bowels. I just despise the uncertainty and anxiety. But there it is, always, even in our sleep. Hang tough, man.

  3. Crystal Lindell at 12:10 pm

    I’m so, so sorry you have to endure this. Thank you for sharing such a well-written and personal account of your daily battle. I wish for you less pain than normal today and peace for your body.

  4. Bruce at 9:00 pm

    This is the truth, this is the reality of living with CC, UC, or Crohn’s. That evil monster haunts my every waking moment. There is no place to hide, even sleep has become a battlefield. The slightest movement would start the engines, forcing you to wake up from a nightmare into another nightmare.