06:00, 11 November 2024
Words by Abi Scaife, Staff Writer, London
"The first time I shared my story publicly, I had no idea what it would become. Now, a year later, I feel like I've built an ‘ostomy haven’ of advocacy and an amazing community that feels like family."
Sara Levitt wears a number of hats - she is a model, an influencer, a marketer - and an advocate. Sara has Crohn’s disease, a long-term autoimmune disease, for which she has had a number of surgeries, resulting in her being fitted with an ostomy bag.
Smiley News sat down with Sara just a week after her 30th birthday, marking one full year of loudly and unapologetically advocating for and raising awareness of life with an ostomy bag.
"I've had my ostomy now for 16 years. She’s permanent. Her name is Liv,” Sara says, smiling. “It’s all about me and Liv, living our best lives. It wasn’t always like that—I had a lot of resentment at first."
Aged three, Sara was diagnosed with Ulcerative Colitis - an inflammatory bowel disease that involves inflammation of the colon. By age 11, this had progressed into Crohn’s.
“May 2nd, 2008 I had my first emergency surgery,” explains Sara. “They took out two-thirds of my colon, the ascending and the transcending. They created a colostomy bag with the descending piece.”
When Sara was first given her ostomy bag at 13 years old, there was no choice in the matter. The surgery, and the ostomy, was about saving her life - and though there was the potential for a reversal, she knew this surgery would change her life forever.
“The concept of what ostomy life was going to be was - as crazy as it sounds - just as scary as the concept of not making it through,” explains Sara. “That statement alone carries so much weight of how someone like myself in the IBD community could feel about ostomies in the beginning.”
Four more surgeries followed this, eventually removing the last piece of Sara’s colon, and leaving her with a ‘Barbie Butt’ - where the rectum and anus are removed and closed, making making her a permanent Ileostomy.
Obviously, this is a huge change for the ostomate - a term for someone with a stoma. It’s a whole new way of living, and many people, like Sara, feel self-conscious about their stoma, at first.
"I used to Photoshop my bag out of pictures and avoid taking certain photos, but now I look at it and think, ‘This is me, and I’m proud of that’,” says Sara. “I no longer want to hide any part of my life."
Today, Sara has a huge community of almost 30,000 people, all around the world, who are following her journey with Liv. Every day, she has comments from people who are going through the same thing as her who, perhaps for the first time, are seeing someone own their ostomy unapologetically.
"When I go through my comments, I often read things like, 'When I feel down, I look at your posts to turn my mindset around',” says Sara. “Knowing I have this impact keeps me going, even on my toughest days."
Sara’s personal experience makes her acutely aware of the isolation that can come with having an ostomy. She knows that there are other people who are struggling in the way she used to, and wants to pass on the same self-love, and acceptance, that she feels.
“[This is] why advocates in the space are so important for, others going through it,” Sara tells Smiley News. “To see what can be done, how much life can still be lived with an ostomy, and to completely combat that negative stigma.”
One of Sara’s biggest achievements so far in her ostomy advocacy is walking the runway at two shows represented by New York Fashion Week with Liv proudly on display. It is the first time an ostomate has done so, and a huge win for awareness, diversity, and the visibility of people with ostomies.
Creating a world where people can see themselves everywhere - in modelling, on Instagram, on TV - is a huge goal for Sara. She has even started writing a book about her experiences.
“An ostomy is not a setback, it is a second chance at life. You better take advantage of it, because not a lot of people get that.”
Charity check-in
At Smiley Movement, we like to elevate the work of charities across the world. Here are three charities whose causes align with the themes in this article.
IBD UK. IBD UK is a partnership of 16 organisations working together to improve care and treatment for everyone affected by Inflammatory Bowel Disease. Support them here.
Colostomy UK. This UK based charity is here if you have questions, need support or just want to talk to someone who lives with a stoma. Find out more,
Chameleon Buddies. Chameleon Buddies promotes social inclusion among people living with a stoma or childbirth injury, both in the UK and in Kenya. Learn more here.
This article aligns with the UN SDGs Good Health and Wellbeing, Reduced Inequalities and Partnerships for the Goals
