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From 'hell' to self-love: How a Montreal content creator embraced life with an ostomy

While it can be "triggering" to recount her trauma, Sara Levitt says she wants to show others they aren't alone.

Sara Levitt reflects on journey to self-acceptance and confidence with her ostomy. Photo via Instagram/ @saralevs
Sara Levitt reflects on journey to self-acceptance and confidence with her ostomy. Photo via Instagram/ @saralevs

Sara Levitt recalls her journey as full of fear, self-doubt and embarrassment.

From battling a chronic illness from a young age, to learning how to love her body, the Montreal content creator is now on a new path of acceptance. But it wasn't easy.

Levitt, 29, opened up to Yahoo Canada about turning her challenges into triumph.

Nights at the hospital throughout childhood

Levitt was diagnosed with colitis when she was just three years old. In 2006, her colitis evolved into Crohn's disease, an inflammatory bowel disease.

For the following two years, Levitt spent most of her time in the hospital, sometimes for two or three months at a time.

"I was there during all of the holidays too," she said, adding she was homeschooled at the hospital as well.

Montreal Canadiens' players visit Sara Levitt at hospital over holidays after being admitted to hospital for the first time. Photo via Sara Levitt
Montreal Canadiens' players visit Sara Levitt at hospital over holidays after being admitted to hospital for the first time. Photo via Sara Levitt

Nights spent alone at the hospital after her family and friends headed home proved to be especially difficult. "Those moments when I had to be alone and I wasn't surrounded by my support circle were some of the lowest, lowest moments," she said.

She couldn't help but feel like a burden.

To see the pain and challenges it gave my family was hard to process.Sara Levitt

"Having my mom constantly in and out of the hospital definitely pulled her away from the family," she said.

Levitt poses with mom in hospital bed post-op following proctocolectomy. Photo via Sara Levitt
Levitt poses with mom in hospital bed post-op following proctocolectomy. Photo via Sara Levitt

During those two years spent primarily in the hospital, Levitt was taking up to eight pills per day, after trying injections, special diets and naturopathic remedies. "We tried everything."

While some of the medications she took "masked the pain" — they weren't a long-term fix.

Eventually, "it got to the point where surgery was on the table," Levitt said. An ostomy was always a "last resort" and something she had "pushed off" for as long as possible.

"I was thinking, 'Oh my god, my life is about to change... How am I going to go through life like this? This is the worst thing ever.'"

As Levitt's illness worsened, it became "a life or death situation" that changed her relationship with food.

Sara Levitt poses with PICC line for TPN, experiencing
Sara Levitt poses with PICC line for TPN, experiencing "moon face" from the steroid Prednisone, 1.5 years after Crohn's diagnosis. Photo via Sara Levitt

"I was scared to eat because eating would cause severe amounts of pain. It was really hard physically and mentally. I had dropped a tremendous amount of weight," Levitt said. She constantly found herself asking, "'Why me? Why did God give this to me?'"

Food was associated with pain for me... I was skin and bones.Sara Levitt

Levitt had to learn how to insert a feeding tube into her nose at the age of 11 — something she had to do "night and morning."

"I was having problems with my liver, I had a blood transfusion, my bones were super brittle, I was extremely malnourished, they were feeding me from a nose tube and TPN (total parenteral nutrition)."

Undergoing 'life saving surgery'

When less invasive treatment methods were no longer an option, Levitt recalled her doctor saying, "'Sara, you need this surgery. It's a life saving surgery. We've done everything we can... your body is too weak to go through anything else.'"

Sara Levitt preparing for at home feeding with nose tube amid battle with Crohn's disease. Photo via Sara Levitt
Sara Levitt preparing for at home feeding with nose tube amid battle with Crohn's disease. Photo via Sara Levitt

On May 2, 2008, Levitt underwent an emergency seven-hour surgery where two-thirds of her large intestine were removed. That's when she was given a colostomy bag, and she explained her rectum was left intact to preserve the possibility of having the bag removed in the future.

Waking up after surgery — with a bag attached to her body — was "scary," Levitt said. "It was almost like an out of body experience."

Her first post-surgery meal marked a turning point, however.

"I hadn't eaten in four days," she said. While she was advised to take her time and start off with eating something soft, Levitt was ready for a real meal.

"I remember telling them, 'I want to eat and I want to eat something right now.'" After eating an "entire plate" of spaghetti, "my new little friend started working," Levitt quipped."That was a happy moment for me."

Despite her relief knowing her ostomy was doing its job, she was full of questions and feared it would be "more challenging" than the previous two years of being chronically ill.

It was my own version of hell... My confidence was completely shattered.

She was going to have to "learn to live" with something visibly new on the outside of her body, saying, "I had this whole part about me now that I want to hide."

In her coming of age, Levitt was concerned her ostomy would prevent her from enjoying core teenage experiences: "go to the beaches, wear two-piece bikinis, go to parties and go to school."

Sara Levitt poses for photo in 2009, one year after first colostomy surgery. Photo via Sara Levitt
Sara Levitt poses for photo in 2009, one year after first colostomy surgery. Photo via Sara Levitt

A powerful conversation with her family motivated her to adopt an optimistic perspective and do "every single thing" she could to rebuild her confidence.

"I had promised myself in that moment I was going to do every single thing I can to learn to love this new version of me, work on my self-love, self-acceptance and my confidence, and really make the ostomy a part of me," Levitt remarked.

I will learn to love it because of the opportunity it's given me. It gave me my life back.

Levitt underwent several more surgeries in the coming years including revisions to her stoma and the removal of her remaining large intestine, all the while still hopeful in the back of her mind that her ostomy would not be permanent. "Just the known fact that there could be a possible reconnection — I had hope for that," she said.

Sara Levitt poses in hospital gown ahead of rectum removal surgery. Photo via Sara Levitt
Sara Levitt poses in hospital gown ahead of rectum removal surgery. Photo via Sara Levitt

While learning to live with an ostomy in the meantime, to her surprise, the ostomate reached a point where she was beginning to feel, "very comfortable with myself."

By the time Levitt's doctor advised that it was in the best interest of her health to undergo another surgery and have her rectum removed — making her Ileostomy permanent — she had "no doubts.”

"It was clear as daylight," she reiterated.

"All this work that I have put into myself, learning how to make this work for me, realizing how much life I could live, how healthy I am," she said.

I would not give it up for anything. My health and my happiness are the most important.

Levitt felt grateful for her ostomy.

"The happiness, the opportunities, the experiences, being able to eat everything that I wasn't able to because I was so sick before... It's all I ever dreamed and wished for when I was sick in the hospital."

Sara Levitt poses for first personal photoshoot with Ostomy visible in 2018. Photo via Sara Levitt
Sara Levitt poses for first personal photoshoot with ostomy visible in 2018. Photo via Sara Levitt

Today — five surgeries later — Levitt is focused on living her best life with an ostomy, connecting with the Ostomate community and advocating for awareness.

November marks Crohn's and Colitis Awareness Month in Canada, celebrating knowledge and education about the diseases.

While it can be "triggering" to recount her trauma, Levitt is committed to inspiring others with her story and showing them they are not alone.

"I have to be so resilient and so bold to go back into my memory and talk about some of the most sensitive and scary parts of my life. It's something that I'm so happy to be able to do and honoured that I have enough strength to do that," she said.

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