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Lyfestories: Molly Olly Ostomy

“It’s all in your head – you just need to be happier and go take a walk, be a ‘normal’ twenty-something.” I had just woken up from my colonoscopy, still bleary-eyed from the anesthesia, and these were the words that my gastroenterologist said to me.  I laid there and sobbed, how could it have come back normal? How could I have so much abdominal pain, how could I poop twelve times a day, how could any food I ate make me want to throw up if it was normal?

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 GIs before I was even two years old, but the 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.  I ended up thinking that lying on bathroom floors after every meal while writhing in pain was normal. And after hearing so many doctors downplay my symptoms, I stopped telling anyone how much pain I was in.

My digestive system limped along until October 2016.  I ended up in the ER with bloody diarrhea, and based on my initial colonoscopy, the doctors were convinced that I had Crohn’s Disease.  I even had prescriptions for the heavy-duty medications used to treat it.  But after my system didn’t respond to the steroids and the doctors reviewed my case, I left the hospital 13 days later with a diagnosis of ischemic colitis.  Everyone said I would be up and running in a couple of weeks. But I never got better. My pain increased, my appetite decreased, and I was miserable.

I knew my body and I knew that something was up, so over the course of seven months I visited every specialist imaginable. I had several second-opinion doctors tell me it was all in my head, and I was defeated.  Finally, I saw a new gastroenterologist who did an X-ray of my abdomen and found out what was going on: I had five feet of stool sitting in my colon and small intestine, backing up into my stomach. No wonder I didn’t feel good. After several tests, I learned that I had “anatomical and functional abnormalities of my colon and rectum” – no matter how hard I tried, I’d never be able to poop normally.  This was a result of my Generalized Hypermobility Spectrum Disorder (gHSD), a disease that affects my body’s collagen and the structure of all my joints and organs.  I didn’t learn that I had this disease until earlier this year, and that’s a story for another day.  But because of that underlying condition, I got to meet my new best friend, Olly.

I met my new best friend, Olly, on June 14, 2017. Less than a month earlier, I sat in my surgeon’s office thinking that we’d be scheduling a colon resectioning. I left that appointment with the shocking knowledge that I needed an ileostomy.  That threw me for quite a loop – I was twenty-one, supposed to be healthy, and here I was having a surgery that most patients have in their seventies.  I didn’t know much about ostomies aside from the stigma that ostomies are gross and people with them smell bad. The weeks leading up to my surgery were the most emotionally exhausting weeks of my life, but what helped me the most was learning about ostomies from blogs and websites.  Even if the people writing them were a lot older than me and had surgery for different reasons, reading their words made me sure that I could handle life with an ostomy.

When I woke up from surgery, I didn’t have any of the abdominal pain that was constant for most of my life.  And I knew right then that I was going to love Olly even when he was a troublemaker.  After all, he gave me my life back.  It hasn’t always been easy – I’ve had an ileus, tons of middle-of-the-night bag leaks, skin breakdown, and a prolapse all within the last nine months. But despite all that, I am beyond thankful for the little guy.

I decided to start my own blog, MollyOllyOstomy, right before my surgery so that I could share my journey with the world.  When you’re little and you play hide-and-seek, the seeker shouts “Olly Olly Oxen-Free” to let everyone in hiding know that it’s safe to come out.  That’s what I want to do with MollyOllyOstomy – let those with ostomies and other chronic illnesses know that it’s ok to come out of hiding and share their stories.

We’ve got a lot to say about our “normal.”

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