Guest post by:

Ashley Byrd Pharr

I’ve always been bathroom shy.

As a teen, I hated changing clothes in front of my friends, talking about our periods, “going #2” at their houses during sleepovers.  I was mortified of ever passing gas in front of anyone I knew.

I was modest to a fault:  As I began to go on family vacations with my best friends, to church camps, for out-of-state journalism programs, I would hold in my stool for days at a time…until I could find a totally private restroom for a little relief.

Like a lobster being slow-boiled in cold water, my symptoms started so gradually that I can’t recall when the trouble began.  But by summer 2002, my bowel movements were becoming more frequent and more explosive.  Eventually blood began to appear on rare, scary occasions, they were red and terrifyingly bright against the white porcelain and muddy liquid stool.  Still, I kept this to myself, too embarrassed to share.

One winter night in early 2003, on my short drive home from work, I had my first “accident.” I didn’t tell my mom; instead, I cried and cleaned up myself (and my car), alone.  Then I began an Internet search on Crohn’s Disease, an IBD.  My dad had been diagnosed with it in the 80s and had passed just two years before. I vaguely knew the disease was associated with the intestines, but I had never taken the time to learn what Crohn’s was.  As soon as I saw a list of symptoms—checking them off one by one—I knew this is what I had, too.

I wouldn’t be formally diagnosed until that summer, after a long spring of blood tests and X-rays, CT scans and MRIs, upper GI tests (which showed no disease) and eventually a colonoscopy the week before I left for vacation.  I was prescribed several medications after my scope, as my gastroenterologist could see inflammation without an aid.

But I was 18:  I had just graduated high school, and I felt invincible as I stood on the sands of Panama City Beach.  I missed meds, ate whatever I wanted, and picked up an H. Pylori infection from the salt water we played in every day.  As we drove home, I became sick as a dog.  I began vomiting so often that all I could pass was bile through my mouth, and all I passed on the toilet was blood.

By then, the blood didn’t faze me.  I was used to it.  Yet, on the other hand, I thought I was dying—and that thought was terrifying.

During these weeks, the biopsies taken during my colonoscopy were returned, and my GI doctor knew my diagnosis for certain:  Crohn’s Disease.

For 3 weeks and 3 days, I was in the hospital while my intestines rested, and I dealt with my new normal.  I wasn’t allowed to eat or drink during that time. Initially, I would imagine stealing my roommate’s leftovers and cry when I saw juice boxes as they wheeled me through the halls.  Once my doctor actually explained my treatment, I became the model patient:  I would “window-shop” the vending machines with my pet IV “Pump,” dreaming of when I could eat again, and I consumed tube after tube of Bonne Bell LipSmackers vanilla frosting gloss. I was released in early August, just weeks before I was supposed to start at the University of Central Arkansas, which I had to defer.

In the 16 years since then, I have experienced years’-long remission, and I have been brought to the brink of death when my diseased colon ruptured. This led to the emergency removal of 5 to 6 inches of my colon—for a new “semicolon”, a name given by a friend since I teach English. Afterwards, I had a colostomy for 4 months, naming my stoma “Mr. Brixby, Attorney-at-Law”.  I’ve been on anti-inflammatory medications (including steroids), antibiotics, and immunosuppressants, most significantly Remicade (a very expensive infusion I receive every 8 weeks); and I’ve had to take supplements for deficiencies, due to malabsorption.  Despite this, my disease has been fairly well-controlled. Yet when it flares, it flares to such an extent that I’ve decided that if I ever have a stoma again, I’m naming it after one of the Icelandic volcanoes, for my disease’s ability to lie dormant until it erupts with a vengeance.  Mostly, I have struggled with an erratic immune system (primarily resulting in chronic sinus issues and infections), weakened teeth and bone density loss, low energy, decreased vision, fluctuating weight and body image issues, mild depression, skin rashes and infections, and more.

Recently, I was hospitalized for a long weekend when a kink developed in my colon.  My disease didn’t care we were packing to move cross-country.  It has taken months since to get my BMs back to their normal.  However, the experience gave birth to a new nickname for my insides: I have a “kinky colon.”

Crohn’s doesn’t just impact one’s colon—it impacts the whole body.  And because of this, it has put kink after kink in my plans and affected my whole world.  However, it has made me a more adventurous lover of food, as I was once a very picky kid.  It also helped me overcome my modesty issues, and I’ve been able to support several friends on their medical journeys because I shared my story publicly, poop and all. Most importantly, it has impressed upon me to seize any and all opportunities to explore our world now, rather than waiting for when I feel better, for retirement, for tomorrow, for the future.

I still get a little bathroom shy on occasion.  But after “experiencing” toilets across the world, I’ve become more bold and body-positive in the bathroom, accepting the fact that everybody poops, all kinds of poop—including 10 million other IBD Spoonies like me.

You can follow my slightly off-beat travels on Instagram @thepharrsideblog