‘The doctor said, ‘It’s just teenage girl stuff.’ I was living with everyday pain as if it were normal, forced to accept feeling this way forever.’: Young woman shares journey to Ulcerative Colitis diagnosis, ‘My life is just beginning’

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“I’ll never forget the moment the doctor told me, ‘You have ulcerative colitis, and it is one of the worst cases I have ever seen.’

Shock. Panic. Anger. Confusion. Overwhelm. Those were just a few of the emotions I felt when I heard those words while lying in a hospital bed. Years of undiagnosed pain lead me to that moment, yet it felt so incredibly isolating and nowhere near the answer I was looking for.

I was 21 years old, almost done with my senior year of college. I was in the midst of the years that were supposed to be some of the best of my life. Yet every day I felt sick. I could barely eat without feeling nauseous. I felt exhausted every moment, and no doctor could tell me what was wrong. I was missing out on making memories, going out with my friends, living in the moment feeling carefree and full of joy. And it’s all I desperately wanted to do. I ultimately lost friends because no one understood why I never wanted to hang out with them. I looked fine, after all.

Courtesy of Tatiana Skomski

Since before I could remember, I had periods of my life where I felt sick pretty much all the time. The youngest I remember feeling this way was around age 12 or 13. I always felt sick after eating, and basically everything I tried to eat made my stomach hurt. The first time my mom started taking me to doctor’s appointments, searching for answers, we were basically turned away.  They did some tests here and there, but the answers were always the same.

‘It’s probably just anxiety.’

‘It’s just teenage girl stuff.’

‘It looks like it might be an eating disorder.’

‘Let’s put her in therapy and see if it helps.’

Never once was my pain validated by a doctor I saw. Thankfully, my mom never gave up and always believed me. But there was only so much she could do.

Years went by, and without answers, I learned how to cope—I learned how to move through  life with everyday pain, as if it were completely normal. I went away to college (I grew up in San Diego and went to the University of Oregon) and came to terms with the fact this might be how I’d feel forever.

Courtesy of Tatiana Skomski

A few years later, my symptoms really escalated. And there I was again, faced with doctors who did minimal tests and told me it was all stress and in my head. I took matters into my own hands and made some dietary restrictions that seemed to act as a band-aid for a little while.

Now, here’s where the story gets a little weird. But stay with me, okay?

Growing up, due to the way my jaw was formed, I knew I would eventually need to have jaw surgery and braces once my bones were done growing. Come sophomore year of college, it was time for me to get those braces and begin my journey towards corrective jaw surgery.

Two years later, my senior year of college, I was ready for the surgery. I planned to have it while I was home for winter break (which, looking back, was not nearly enough time for me to heal). Let’s just say it was one of the most intense things I have ever gone through – a five and a half hour surgery that left me with my mouth wired shut and on a scary amount of painkillers.

The trauma and stress from surgery is what led to my first life-threatening ulcerative colitis flare. At the time, I didn’t know that’s what it was. All I knew was I was in debilitating pain – I couldn’t walk or keep a sip of water in my system. My parents took me to the emergency room where they admitted me for the night and did my first colonoscopy (EVER) the next morning. The fact I’d never had a colonoscopy before then still baffles me.

Courtesy of Tatiana Skomski

That’s when I heard those words that are so ingrained in my brain:

‘You have ulcerative colitis, and it’s one of the worst cases I have ever seen. You’ll probably leave here with your colon removed —it’s that bad,’ the doctor said.

I spent the next three weeks in the hospital being pumped full of steroids, iron, blood transfusions, and my current biologic (Remicade) that ultimately saved my life and put me in remission. What followed was me having to withdraw from the next term of school and stay home to start my new journey as Tati with ulcerative colitis. As I clicked ‘withdrawal from term,’ I promised myself that day in my hospital bed I would finish my college degree no matter what. And I did!

As I slowly but surely gained my strength back over the following months, I was forced to slow down like I never had before. At the time, I resented it. I hated the disease that left me bedridden, alone, and (to me, what felt like) unlovable. I  found myself at odds with my disease, hating it and myself for what I had gone through and would be left with for the rest of my life. I was a broken version of myself. I had no self-love or confidence anymore, and I was nowhere near acceptance of my disease.

Courtesy of Tatiana Skomski

When I decided I wanted to love myself and accept my chronic illness diagnosis, I went on my own healing journey that changed my life. I created a relationship with myself that I cherish now and wouldn’t trade for the world. I never wanted any womxn to have to go through the healing process alone, and so I became a certified coach to help womxn with chronic illnesses learn how to love themselves alongside their diagnoses. In doing so, I found purpose, passion, community, and friendships in what ultimately almost killed me.

December 17th, 2015, the day I was diagnosed, changed my life forever. At the time, I didn’t know it would be for the better. At the time, it felt like the end of the world. It felt like my life was ruined. Little did I know it was just beginning.”

Courtesy of Tatiana Skomski
Courtesy of Tatiana Skomski

This story was submitted to Love What Matters by Tatiana Skomski of Portland, OR. Be sure to subscribe to our free email newsletter for our best stories.

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