Woman Hid Ostomy Bag for Years in Fear It Would Scare People Away. But 1 Trip Changed Everything (Exclusive)

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3 days ago

Sara Levitt is a model and content creator with over 43,000 followers on Instagram
The 30-year-old is also a Crohn's disease and ostomy advocate
For 15 years, she kept her ostomy bag hidden from the world. Now, she's setting a powerful example for others to embrace life openly and confidently with chronic illnessSara Levitt is breaking barriers in more ways than one. A lifelong battle with Crohn's disease and years of living with an ostomy haven't stopped her – in fact, they've fueled her.
Now a 2025 delegate for Miss Universe Canada, the Montreal native is using her platform to advocate for chronic illness awareness.
Known for her humor, Levitt often says, 'I like long walks on the runway while taking a poop in my bag' — a sharp reminder that confidence comes from authenticity, not perfection.
The 30-year-old's journey is as much about survival as it is about redefining what strength and beauty look like.
'In my community, there is no such thing as TMI when you live with a chronic illness and a visible difference that literally revolves around poop – a topic that has been deemed taboo by society for so long,' Levitt tells PEOPLE exclusively.
Levitt was diagnosed with ulcerative colitis at just 3 years old after her mother noticed symptoms like blood in her stool, frequent crying, and loss of appetite.
Extensive tests and a colonoscopy confirmed the diagnosis. Things took a turn for the worse in March 2006 when doctors found her ulcerative colitis had progressed to Crohn's disease.
The next two years were the most difficult, marked by extended hospital stays, sometimes for three to four months at a time, in total isolation due to being immunocompromised from treatments.
Young Levitt was put on high doses of prednisone and other medications, taking six to seven pills daily, and was fed through a nasal tube, which she began using at age 11.
'I dropped down to, I think, something like 40 pounds at age 11,' Levitt reveals. 'I was skin and bone. I developed moon face from long-term prednisone.'
Doctors tried a range of medications, and while she occasionally reached moderate stability, her condition worsened over time. Levitt experienced severe pain, loss of appetite, and was eventually pulled from school.
For two years, she lived in constant, debilitating pain, unable to live a normal life. The possibility of ostomy surgery was introduced later, after exhausting all other treatment options.
'I had developed a very strong character at a very young age, an armor of shield, in order to carry me throughout that journey,' she says. 'A lot of nights spent alone in a hospital at 11-12 years old, looking out the window…wondering why me? Am I ever going to get better? I just wanted to be out in the world. I just want to be enjoying life.'
After realizing she was no longer responding to medication, doctors determined she needed emergency ostomy surgery. At that point, Levitt was severely malnourished and in constant pain.
Scans and tests showed a risk of intestinal rupture and sepsis. Within days, surgery was scheduled, and she underwent the procedure in May 2008.
'I never wanted an ostomy … I always say now, little me never dreamed … [I could] be a model and a creator with an ostomy,' she admits. 'It was always just – I want to be normal. I want to have a life, and I want to be out of pain.'
Ostomy surgery is a life-saving procedure that allows bodily waste to pass through a surgically created stoma on the abdomen into a prosthetic known as a pouch or ostomy bag on the outside of the body, according to the United Ostomy Associations of America.
When doctors told her an ostomy was necessary to survive, it felt like there was no real choice. It was either life with an ostomy bag or the risk of dying. Levitt agreed to the temporary ostomy, but the stigma surrounding it deeply affected her.
'Obviously I feared a lot of what ostomy life would look like. I had my own thoughts in my head…I literally felt like I was completely alone," she explains. "People are going to think I'm disgusting, that I smell, that I'm gross. That I have this bag of poop on me."
'I'm never going to be seen as beautiful, desirable. I'm never going to fit into beauty standards. No guy is going to want to date me. How am I going to tell new friends? It was literally just fear.'
At age 13, Levitt felt she couldn't tell anyone about her ostomy beyond her family and a few close friends. It was a pivotal age when most girls began discovering their bodies and the world around them but she, instead, was missing out on much of her high school and adolescent life.
'My entire disease revolves around poop and fecal matter which already has its own stigma, and now I have an ostomy, a bag of poop on me, 24/7,' Levitt says. 'I always say I felt like I woke up in my own version of hell, despite what I had just endured over the past two years, which is crazy because that was hell in itself.'
Initially, Levitt's ostomy was temporary, meaning her rectum was left intact for a possible future reconnection. The plan was to eventually reverse the surgery by removing the ostomy and reattaching the intestine, allowing her to use the bathroom normally again.
She clung to that hope and regularly asked her doctor about the possibility of reversal, especially once she started feeling healthier with the ostomy.
While it greatly improved her quality of life, Levitt emphasizes that an ostomy isn't a cure – it's a powerful tool for managing symptoms, but flare-ups can still happen, as they do for many others living with one.
'I count my blessings, and I'm grateful every day. I've had, you know, one or two flare-ups, but nothing to the extremity of where I was before,' she says. 'It was very hard adapting when I first woke up from the surgery.'
When she began her ostomy education, everything was new. Levitt had to learn about the different supplies, how to care for her peristomal skin, recognize potential issues, and adjust her eating habits.
Over time, however, she discovered she could still do normal things like swim, shower, bathe, and even have a healthy sex life. Now, as an advocate, she shares this knowledge to help others see that life with an ostomy is still full and active.
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'The concept of feeling completely isolated and alone in that medical condition is so intensified…because I didn't see anything like me out there in the media,' Levitt says.
She remembers the challenge of resuming school, getting dressed, and figuring out her new style, wondering how she could ever wear tight jeans or low-waisted pants to fit in with the trends.
'Bikinis. I couldn't even have a conversation about bikinis, because it made me feel so sad,' she recalls. 'It made me feel so discouraged and so different that I felt like I could not wear that.'
Levitt felt damaged, and her early teenage years were incredibly difficult as she hid her ostomy completely, telling no one.
'I feared the sounds that my ostomy would make, because sometimes, you know, they could be a symphony, an orchestra, and you can't necessarily control it when you're going poo…it happens,' she says.
The crinkling sound of the ostomy bag, like a chip bag due to its medical film, caused her constant anxiety. That fear and shame were amplified by the complete lack of conversation or visibility around ostomies at the time.
'Even when social media did emerge…It was not community-based. It was not storytelling-based. It was not inspirational content. It was not content to cultivate and foster understanding and inclusivity,' Levitt explains.
Instead, Levitt says social media was filled with "perfect photoshopped" images of celebrities and influencers.
"It was literally like: this is beauty. This is what you want to look like," she says. "This is what you should aspire to be, and none of that was me, and I knew I would never be that.'
She struggled with late puberty and feeling out of place by society's beauty standards. Over time, especially in college, she tried to accept her temporary ostomy, using self-motivation to make the best of it, though fear remained.
Eventually, her doctors told her she wasn't a candidate for reversal and that a proctectomy would make her ostomy permanent. Levitt has had five surgeries since May 2008, starting with a colostomy that later became an ileostomy. Her final surgery took place in her early 20s.
'I had already lived so much life with my ostomy. In no way was I like, 'Oh, my God! I love my ostomy! I'm using it as an accessory. I'm telling everybody, I'm taking pictures of it,'' she admits.
At the time, she had Instagram, but never saw ostomies or Crohn's disease represented. She would only wear bikinis at home, and in photos, she only showed her back. If the front was visible, she always wore a cover-up.
Wanting "so badly to just fit in," Levitt recalls editing one of her photos to remove the pouch.
"The picture is so botched, but I literally photoshopped my entire stomach," she says. "It just looks like a big black shadow on my stomach where I literally photoshop out the bag."
'I literally just captioned it, I think, like 'Pool Side' because I wanted that admiration. And I wanted that infatuation. And I wanted that, you know, attention, that guys and other people were giving to other beautiful ladies, because I felt like I wasn't worthy of it," she explains.
Despite desperately wanting to feel accepted, when doctors told her that her rectum hadn't improved over the years and needed to be removed, it was clear that she had to choose survival.
'It is one of the most intense surgeries for an ostomate to hear, because it means, you know, bag life is the rest of your life,' she shares. Levitt wasn't sure when she'd fully embrace her journey, but that became her goal, and it marked a new phase.
In 2019, she went on a family vacation to Cuba that changed her life. 'I did a very courageous thing, and I told my dad that I was going to pack nothing but bikinis. He had asked me, 'Are you sure you're going to do that? Like you're going to be in public?'' she recalls. 'I was like, 'You know what, Daddy. It's a new country. I'm not going to know anybody. I'm not going to see anybody I know.' '
On the beach trip, she walked around with her ostomy bag visible, though she still instinctively kept her arm in front to cover it. After returning, she started opening up to more friends and partners.
By age 28, she had lived most of her life with an ostomy. She'd started a fitness journey, felt strong mentally and physically, and was building a life she truly enjoyed.
However, the constant pressure of hiding her ostomy bag and having to explain it became exhausting.
Whether it was worrying about the bag showing through leggings, filling up at the wrong time, or being noticed at a bikini party, there was always anxiety. She reached a point where she just wanted to live fully and authentically, without hiding.
In summer 2023, Levitt booked another trip to Cuba and, once again, only packed bikinis. But this time around, she was headed on a solo trip. Though still private on social media, she felt a clear shift from her last visit – walking the beach with full confidence and even handling a bag leak calmly and without shame.
That trip marked a turning point. For every cover-up or back-facing photo she took, she also snapped ones showing the bag. As she looked through them, she felt a new urge: to post them and finally share her story openly.
'I want to share my story. I have nothing to hide and I want to just be able to be myself,' she recalls thinking. 'I look at myself, and I'm like, wow, I see strength. I see beauty. I'm no longer just looking at the bag and feeling like the bag defines me and defines my level of beauty standard.'
She kept her ostomy hidden for nearly her entire life, but after returning from her trip, inspired by the photos she took, Levitt felt ready to share.
On her 29th birthday, in September 2023, she posted the photos and shared her story publicly for the first time.
'I never had a goal of, I guess, becoming like a model and a creator and an advocate, and all of that. I just wanted so badly to just be myself,' she says. 'I never thought I would even have the level of confidence and inner strength that I do now, literally today being able to post pictures with filled bags, being able to literally explain what an ostomy is."
Over the last year and a half, she began to fully embrace it, and her style became a form of self-expression. What once was all high-waisted clothing meant to hide the bag, shifted into fashion choices that reflected who she truly was – bold, confident, and unapologetic.
'I had completely omitted all these other styles. Sheer dresses, low-waisted sweatpants, low-waisted jeans…I would never even look at them,' she says. 'Now it's all that I want to wear.'
Levitt named her ostomy bag "Liv" – Swedish for 'life' – a symbol of everything she reclaimed. When she first shared her photos, she tagged ostomy and Crohn's communities, and the response was overwhelmingly positive.
It helped her realize she wasn't alone, and that connection became a powerful source of confidence and healing. Despite the occasional negativity, she continues to share, knowing that visibility creates change.
'I always say, for all the negative comments, I like proving them wrong, and I like tearing down those ideologies and putting out the right ones and using them to be able to foster awareness,' she explains. 'I'm so proud, and I'm so humbled that I have been able to develop this confidence and this strength through my journey, and be able to be that voice for me and my community.'
Levitt has learned to look past comments like 'TMI' or 'no man will want you.' She tells PEOPLE: 'I laugh in the face of things that I once feared. Humor has been extremely healing for me.'
For years, hiding her ostomy and not talking about it led to deep disconnection and shame, made worse by the lack of community, exposure, and representation. The real turning point came when she shared her story publicly and saw others like her, speaking openly and building connections.
'I get messages from people being like 'I'm not scared about getting an ostomy, because I see the life that you're living, and I know I can have a normal one.' Or 'I wore a bikini for the first time, and it felt so liberating,'' Levitt reveals. 'These messages go to prove the positive impact that social media and community and interaction, and sharing your story can have on other people's lives.'
Now, her Instagram feed is filled with ostomy content – a reflection of the strong, supportive community she's found and helped build, as well as how far she has come.
'Whenever I do a runway or a photo shoot, you know I have my community on my shoulders. I have little me in my heart,' Levitt says. 'If little me saw me in the Maxim Australia magazine, walking New York fashion week, walking Miami swim week…she'd be like, 'Oh, my God, I'm gonna be okay. It's gonna be okay.' '
Although conversations around human waste naturally make people uncomfortable, Levitt has chosen to embrace it fully, knowing firsthand what both sides of that journey feel like.
Luckily, she has been in remission from Crohn's for nearly five years, meaning it's currently inactive and well-managed, though incurable and always present, with the risk of future flares at any time.
'I know what it's like to live in fear and live, not feeling like me," she shares. "[To] be in a body that feels like it was robbed, and you know, not want to go about my days."
'I also know what it's like to live in a body that's different, and love it so much and own it and literally live my life completely out loud, and do every single thing that I want to do for me.'
Read the original article on People