Model Sara Levitt wants to be the first Miss Universe Canada with an ostomy bag: 'A difference can be a superpower'
At 30, she's blending her career in fashion with her advocacy work. She's focusing on raising awareness for people living with invisible illnesses and empowering others to live without shame.
Yahoo Canada spoke to Levitt about living with a chronic illness and her next career move.
Levitt has been battling Inflammatory Bowel Disease (IBD) for the majority of her life. She was diagnosed with ulcerative colitis at the age of three, and by the time she turned 11, her condition had progressed to Crohn's Disease. The next two years were some of the 'most intense and challenging' of her life, filled with severe chronic pain and countless hospital stays.
'I was fighting for my life,' she said. 'It was a really dark time and I felt completely alone and ashamed.'
In 2008, at the age of 13, Levitt underwent an emergency surgery to have part of her bowel removed. She was left with a permanent ostomy bag, a device she wears on the outside of her body that collects her stool.
Going into the surgery, Levitt wondered how she would adapt to living with an ostomy. She dreaded what it would be like to have to carry physical evidence of her illness on her body each day.'There was a piece of me that was hoping I'd wake up and the bag wouldn't be there,' she said. 'When I woke up, I took my right hand, slid it down my hospital gown, and there it was.'
Levitt is upbeat and positive about life with an ostomy, but she wasn't always this way. The first 15 years that followed her ostomy surgery were difficult and dark, and she dealt with her new life alone and with shame. She avoided wearing anything that would reveal her ostomy, she hid her bag from romantic partners and she lived in fear of other peoples' opinions.
For Levitt, the lack of representation for ostomates — people who have undergone ostomy surgery —contributed to her feeling alone.
After years of suffering in silence, Levitt decided she'd had enough; she knew she deserved to live her life to the fullest just as much as anyone else.
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A post shared by Sara Levitt | The Bag Bish | Creator & Model (@saralevs)
'It got to the point where I was just so physically and mentally drained,' she said. 'In summer 2023, I had a bit of an epiphany and I was like, 'I feel really confident in who I am and I've been through a lot and I'm ready to just be me.''
At the time, her Instagram was a personal account for friends, family and acquaintances. But after posting the photos, comments and messages began to pour in from other people with chronic illnesses who wanted to express gratitude for what she had done.
The response showed Levitt how great the need was for advocacy and representation from ostomates, so she kept posting. Her community grew, and today she has 35,000 followers on Instagram, where she calls herself 'The Bag Bish.'
She now wears her ostomy — which she named Liv ('life' in Swedish) — with pride, donning bikinis and dresses that intentionally show off the bag that saved her life.
" It's all about me and Liv living our best lives and showing others not to fear ostomy life,' she said. "It's about showing people you can have dreams and having a difference can be a superpower.'
She regularly receives messages from people who say she's inspired them to wear a certain outfit that reveals their ostomy or to partake in an experience they would've otherwise avoided, and she does her best to respond to as many as she can.
It's about showing people you can have dreams and having a difference can be a superpowerSara Levitt
'To know that I have that ability to alter and change somebody's views and enable them to live their life completely and fully with a visible difference or a chronic illness has given me so much purpose in life,' she said. 'That alone is fuel to my motivation and every single thing that I do.'
In May, Levitt announced she was participating in the Miss Universe Canada pageant this August. She'll be the first ostomate, and first woman with any visible difference to compete. In a post to Instagram, Levitt said her hope was to help show "other woman our challenges do not define us, but merely give us an additional source of strength, and that there is space for us all."
For her humanitarian project for the pageant, she's raising awareness and funds for the Canadian Mental Health Association, a cause she described as deeply personal to her journey. Her health issues s took a serious toll on Levitt's own mental health for many years, and she hopes to shine a light on how chronic illnesses impact every aspect of a person's life — including their mental health.
Research shows that psychiatric disorders are 1.5 to 2 times more prevalent in those with IBD than in the general population, and rates are even higher when considering standalone mental health symptoms, as nearly one-third of individuals with IBD experience elevated anxiety symptoms and one-quarter experience depression symptoms.
'Hopefully I'm able to inspire and touch someone through sharing my story,' she said. 'Just being on that stage and being able to show my community, 'Look where we can go, look what we can do,' it's like we've already got the crown.'
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