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Never Surrender to Battle Fatigue: Reflections from a UC Warrior

It’s Christmas time. A crooning cowboy wails “We Wish You a Merry Christmas” over the store intercom. I’m rubbing elbows with a throng of other holiday bargain shoppers in a western wear store located in a small, southern Ohio town some fifteen years ago. While pushing and shoving occurs among the redneck, camo-wearing types, I clamp down on the hand of my three-year-old son as a lightning bolt of pain shoots through my gut.

I’m suddenly paralyzed.

I halt my holiday bargain shopping. With cowboy boots in hand, I feel sweat beads pop out on my forehead that force me to assess my surroundings. I know this pain. In a few moments, I will drop to my knees. My enemy has arrived in this store. It has trailed me, stalked me, since my late teen years and stands ready to fight at the most inopportune times. With bullet-fired speed, it punches me and shouts its warrior chant, “You are going down, sister!”. I drop the boots, jerk my son’s hand, and grab the nearest sales associate. “Do you have a restroom?” I choke out through the Herculean pain that has seized my entire body. “Yes, ma’am, we do. Right over there,” replies the salesgirl wearing a pasted on holiday grin as she points to an inconspicuous door.

With child dangling from my grip, I fling open the door and slam it shut. My enemy takes aim again as I hunker over in excruciating pain.
“What’s wrong, Mommy?” inquires my three-year-old. Through clenched teeth, I whisper the command, “Turn around and face the wall, Bub.”
Why does propriety step in during times of war? Don’t I need a witness to the ensuing battle that has just begun in case I don’t make it out alive? No. It’s too hideous! This war is not appropriate for anyone at any age. I have locked horns with my enemy, and I already know this fight will be UGLY—all the way to the bloody, messy end.

Since my teen years…

I have struggled and battled with an inflammatory bowel disease called ulcerative colitis (UC). For the weak-stomached individuals, the dirty details will be overwhelming. Just stop right here. Don’t read any further. Sometimes, it’s all right to sit the bench. For me, the “bench” arrived many years ago in the form of restrooms that are necessary to my participation in life. In short, UC results in the inflammation of the large intestine—a.k.a., colon and rectum. When the lining of the large intestine becomes inflamed, ulcers form on the surface. Because the colon stores stool before defecation, a sufferer experiences severe cramps, abdominal pain, diarrhea, and rectal bleeding. As a chronic, life-long disease, ongoing treatment is necessary. In the long run, no cure will end the wars, which sufferers like me combat.

Why was I blessed with this “glorious” disease? Was it because of my effervescent personality? Or did I just pi$$ off the wrong individual who sentenced me to a lifelong pain-in-the-a$$ disease? Maybe during gestation our Creator looked at me and thought, “Yes, thou shalt be a restroom critic. Go forth and prosper.” Lord knows I have visited every restroom that I have journeyed past during forty-eight years on this planet— some nice and clean but also some unlit, filth-laden ones that no one should ever visit. EVER. When a flare-up occurs, this inflammatory bowel disease warrior cannot afford to be persnickety. Heck, even finding a tree to hide behind might be the best call to action when traveling life’s weary roads.

Living with UC …

…is like living with a bomb waiting to detonate. I never know exactly when the “pain” is going to hit, and when it does, everyone better duck and cover. This chick cannot wait for someone holed up texting in a stall. Oh, you stall-hogs know who you are. I have seen your slovenly ways. This soldier has NO time for you to Facebook, text, YouTube, or talk to your “ever-so-important-friend” while imprisoning a commode needed for duty. This colon clock of mine tick-tocks, tick-tocks the few precious seconds before eruption occurs. When my body triggers the battle alarm, this UC soldier springs into action.

As a warrior, I have discovered a few “triggers” for my flare-ups. First, not finding a restroom or available stall will send me into a ten-alarm fire mode. No amount of first responders will aid my relief. At this realization, I have approximately thirty seconds before explosions occur no matter how hard I attempt to stop them. Nothing screams “humiliation” worse than pooping your shorts at a football game because of occupied porta-potties. As a matter of fact, I once ditched a pair of my favorite undies in a trash can while tailgating at a Marshall University football game in Huntington, West Virginia. Thank goodness jeans hid the remaining dirty evidence that day.

Next, stopped traffic will net approximately a five-alarm fire mode. Seeing cars backed up on a highway signals my colon like the start-up command at a NASCAR race: “Drivers, start your engines!” Vroom! I need to race to a restroom! Highway construction and traffic tie-ups became the reason I now carry a roll of toilet paper in my car. If need be, I will do my business between an open front and back car door. Vanity flies out the window during such emergencies.

Must I also mention food? Oh dear! Roughage—or heck, food of any kind—will result in a “rough” journey through my digestive system. The gurgles, growls, knocks, pings, and pains remind me each day that a simple cheese sandwich on the outside faces a grueling trek on the inside. In essence, anxiety of any kind will crank up the boom bass of my raucous intestinal jam session. No degree of horse pill or steroid to blow me up into a pufferfish will aid me in this fight. I am resigned to the reality that this disease which stalks my every move, requires me to go where no man, woman, or child would choose to go.

Once, I went in search of a cure…

…at a Mexican clinic. Through word of mouth, I heard about a person who found “miraculous” medicine for UC at this clinic in Tijuana, Mexico. Desperation forces people to make drastic choices. As a twenty-something, I was willing to travel to the netherworld if necessary. Little did I know, Tijuana was that netherworld. Anxiety-ridden, I boarded a plane and spent much of that flight to San Diego, California, in the restroom. Colitis, paired with an overactive imagination, on top of flying represent a triple threat. All I could envision the entire flight was crashing somewhere between Ohio and California. I figured during that trip that a poopy colon wouldn’t matter so much once my scattered remains were all gathered up.

That same train of thought also hit me once I survived that flight and crossed the border into Tijuana. Traversing the back streets of this netherworld seeking some mysterious clinic forced my colon into such epileptic seizures, I wasn’t sure I would ever make it back to the states alive. After the fact, I realized that my colon attempted to warn me. I never should have visited that clinic, never should have braved the streets of Tijuana to find this voodoo medicine, and I should have listened to the toothless stranger who stuck his grimy face in mine and whispered, “A young lady like yourself shouldn’t wander the streets alone.” Signs…the signs were everywhere.

Again, sometimes desperation forces soldiers into unknown territory. After that trip, I ended up in the hospital with rectal bleeding so profuse that my gastroenterologist almost fired me as his patient. Lesson learned: Miracles do not live in Tijuana.

I’ve also considered surgery to end this war.

My hopes laid—literally—in the hands of the academic medical center at the Cleveland Clinic. Leading as the top digestive disease center of the United States, the Digestive Disease and Surgery Institute at Cleveland assured me that the most advanced treatment provided by the specialists would be my intestinal savior. With my Grand Canyon-sized medical history in tote, I drove almost five hours north to the Cleveland Clinic in hopes of retiring from this hard-fought war.

First, I spent hours waiting in a deep freezer called the waiting room. Sitting for any length of time when suffering from an inflammatory bowel disease just didn’t make sense to me as I continually stared at my appointment timecard. Once I made it to the examination room, I spent more time learning about J-Pouch surgery; wherein, specialists remove the colon and rectum and create a J-pouch reservoir for digestion. Did I want to get cut? Did I want to lose my colon and rectum and go through months of a two-step process? Deal with a temporary ileostomy until the process ends? What do doctors do with a defunct colon and rectum once removed? These questions fired off in my head like an automatic weapon as a team of doctors surrounded me.

After getting interrogated by the “team” (at least ten doctors), I realized my intestinal savior did not exist at the Cleveland Clinic. In case one has never experienced it, nothing says “problem solved” like bending over an examination table at the waist, dropping your drawers, and having your rectum checked for definitive proof of colitis in front of a team of witnesses. The humiliation of “ass investigation” was too much for this soldier. After pulling up my big-girl pants, I knew I would march onward through this war-torn mission.

With each flare-up, I am reminded how to live.

I have learned from my enemy. It lives inside me and uses me as its tackling dummy. How glorious a pain free life would be! If given the choice, I prefer not only never knowing the seedy side of restrooms but also never meeting a team of professionals questioning my bum’s integrity. I also prefer not looking down into the bowl of life—full of its murky, dark details. For whatever reason, I am left to carry UC as my badge of valor.

In a spiritual sense, I am another ulcer—an open sore that faces disintegration. In life, I will encounter many “cheese sandwiches” that will not be digestible. My journey has taken me through poking and prodding (and the taking of glorious pictures) in areas that no one wants prodded (or photographed). This disease is one that I will carry for the rest of my life. Through all the painful suffering, I see the irritants and ulcers that life presents everyone. With ulcerated pictures glaring at me from life’s holy photo album, I can vouch that we all must accept life’s trials and tribulations. No cures exist to end them. One may choose to cut out and remove a twist or turn on this roller coaster journey. In the end, the twists and turns provide a vision of the universe as a vast landscape filled with pockets of despair but also with pockets of hope.

In that western wear store, I am Harry Dunne from Dumb and Dumber. Recall the bathroom scene when Harry learns too late that the commode won’t flush. Ah, yes—I, too, am unable to flush my enemy away on that memorable holiday shopping excursion. When the battle ceases and the flame throwers and missiles have halted in this war room, I turn to discover this one-seater of a restroom doesn’t flush.
“Flush, you [email protected]!” screams my heart in true Harry Dunne fashion.

As the sweat continues to pour, I jiggle the handle and hear a small voice facing the wall: “What’s wrong, Mommy?”
“Nothing!” leaps from my lips as I rip off the top of the commode. “Don’t come over here, son! I have to fix this commode!”
To no avail, this soldier stands unable to flush away the dirty details of the intestinal battle. After surrendering, I wash my hands, grab my child, and look both ways outside the restroom door before exiting. Granted, I feel terrible for the minimum-wage worker left to discover what I was unable to hide. Like me, that worker must accept the murky, messy pains that this diseased society presents.

Through the trials and tribulations of an inflammatory bowel disease, I know I stand as an infected body living in an infected world. This roller coaster journey I traverse, reveals greater truths and wisdom issuing forth from this pain-in-the-a$$ disease. In the end, it serves us well to grab a hold of Hope that resides within this diseased world. Grab it, never let go, and ignore the battle fatigue knocking on the door—waiting and praying for surrender. For this represents more than a disease. . . It is a drill sergeant molding and shaping me into life’s soldier—training me to maximize and tap in to an ultimate warrior’s strength.

With this rigorous regimen, I stand dressed in my battle gear. . . ready to fight, seize, and retaliate against my enemy as life’s battle wages on.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Amanda Osowski moderator
    4 months ago

    Thank you so much for sharing your journey.

    Thinking of you!
    Amanda (team member)

  • thedancingcrohnie moderator
    4 months ago

    This was so beautifully written.

    Thank you for sharing your story with the community.

    Reading it, I couldn’t help but nod in agreement. IBD is like fighting constantly in a horrendous war. We must be fine, strong soldiers to be able to endure the fight. And goodness, do we endure so much.

    I hope you are finding relief these days. And don’t worry, you aren’t the only one who has tried venturing out the conventional medicine world in desperation to find a solution to the pain.

    Wishing you the best in help always!

    Always dancing,
    Elizabeth (team member)

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