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If I can make a difference by sharing my story, I’m certainly not going to be quiet about it

Olly and I have got plenty to say about our new normal.

This post originally appeared on Love What Matters.

“It’s all in your head. You just need to be happier and go take a walk. Be a normal 20-something.” I had just woken up from a colonoscopy, still bleary-eyed from anesthesia and these were the words my gastroenterologist said to me. I laid there and sobbed.

How could the results have come back normal?

Why do I have so much stomach pain?

How come I poop twelve times a day?

If everything is “normal” then why does all the food I eat make me want to throw up?

I’ve had gastrointestinal issues since the day I was born. I was constipated throughout my entire childhood, relying on laxatives, suppositories, and mineral oil to poop once a week. My parents brought me to three GI doctors before I was even two-years-old, but their response was always, “that’s normal for kids, make sure she’s eating fiber and getting enough exercise, and she’ll grow out of it.” But I never grew out of it. So, lying on the bathroom floor after every meal in writhing pain became my new normal. In middle school, I even ended up in the ER with what I thought was appendicitis because the pain was so excruciating. After years of hearing doctors downplay my symptoms and telling me it was "just gas," I stopped telling everyone how miserable I was.

My digestive system limped along until October 2016. I was training for a 14-mile Spartan Race with my boyfriend when a week before the event, I awoke one night with what I assumed was food poisoning. Worried that I’d missed a whole day of training, I started to panic. Diarrhea kept getting worse and worse, and then it turned into straight-up blood! I should’ve been on a plane flying to the race but instead, I spent hours prepping for a colonoscopy in the hospital. The doctors initially believed I had Crohn’s disease but even with a dose of heavy-duty steroids and a PICC line for TPN, I wasn’t improving. I left the hospital after 13 days with the diagnosis of 'ischemic colitis' along with a promise from my medical team that I’d be feeling better in a couple of weeks. I never got better. To make matters worse, I took incompletes in all my courses at school and went home feeling defeated.

Visitors make having the NG tube better.

Visitors make having the NG tube better.

I knew my body and something was up. Over the course of seven months, I visited every specialist imaginable but none could figure out what was wrong. Finally, I saw a gastroenterologist who did an X-ray of my abdomen and found out that I had FIVE FEET of stool sitting in my large and small intestine — it was actually backing up into my stomach. No wonder I didn’t feel good! While juggling second-semester senior year courses (plus the courses I hadn’t finished from the previous semester) I traveled back and forth from the hospital to conduct tests that no human should ever have to go through. I remember sitting in the waiting room, pouring over my final exam notes for a test the next day while drinking barium for a CT scan, wondering what my life was becoming. My results came back and the doctor told me I had anatomical and functional abnormalities of my colon and rectum. The functional GI disorder is why my bowel looks normal but doesn't work properly, and the anatomic problems affect my lower GI tract. Basically, all of this meant I’d never poop normally without surgical intervention.

On May 14, 2017, I graduated Summa Cum Laude and walked across the stage as my professor handed me a diploma. Twenty-three hours later, on May 15, I had my appointment with the surgeon who told me I needed an ileostomy. I was 21. To say I was terrified would be an understatement. I didn’t know much about ostomies aside from the stigmas; they smell bad, the bag leaks, and it destroys any chance of wearing cute clothes. So, I did what many others have done in the same situation — I had an emotional breakdown.

My ostomy nurse Kristine is basically an angel in scrubs.

My ostomy nurse Kristine is basically an angel in scrubs.

I started looking for information about living with an ostomy everywhere I could find it. I watched YouTube videos that showed people doing bag changes, I read articles about post-surgery tips, and I met with ostomy nurses who'd also care for me afterward. Something I found a little disconcerting was that most of the resources were directed at people much older than me. That’s not to say there aren’t ostomates my age. I know plenty of 20-somethings living with an ostomy, but I couldn’t relate because they didn't have my story, my reality. And so I started writing. One week before surgery, I posted my very first picture on Instagram. Getting my thoughts and feelings out of my head and into posts was a way of processing everything that had happened.

I knew I wanted to name my ostomy (as a coping strategy) and the alliteration of “Olly the Ostomy” fit perfectly. The name “Molly Olly Ostomy” has deeper meaning though. When you’re little and play hide-and-seek, the seeker shouts out "Olly Olly Oxen-Free" to let everyone hiding know it’s safe to come out. That’s exactly what I wanted to do — let those living with chronic illness or ostomies know it’s okay to come out of hiding. 

I met my new best friend “Olly” on June 14, 2017. When I woke up from surgery, I knew I was going to love Olly even if it was a troublemaker. I’ve learned a lot along the way and it hasn’t always been easy. I’ve had a ton of bag leaks, some skin breakdowns, a handful of messy changes, and plenty of good cries. In the past year and a half, I’ve had three surgeries, lost three organs, and spent more than 60 days in three different hospitals. Yet in that time, I’ve also graduated with a Master’s degree, hiked in the Grand Canyon, started a full-time job, and got engaged to my best friend. These amazing moments would not have happened if I were still in horrible pain. Olly gave me my life back.

Might need to get a graduation cap for Olly,

Might need to get a graduation cap for Olly,

The second thing that keeps me going? The ostomates who sit in silence and struggle to accept their new life. It’s not an easy path we travel down. Nobody wakes up and thinks, “Gee, I wish I pooped in a bag!” But it’s a path worth taking because it saves lives, and that's something we shouldn’t be ashamed to talk about. So, if I can make a difference by sharing my story, I’m certainly not going to be quiet about it. Olly and I have got plenty to say about our new “normal.”