It’s Crohn’s and Colitis Awareness month in Canada and we are starting it off with an in-depth Q&A from Sara Levitt
. Sara has lived with inflammatory bowel disease (IBD) for 26(!) years and is eager to help those in the community and share her story about living with Crohn’s disease and life with an ostomy.
Sara Levitt’s Crohn’s and Colitis Journey
“At the age of three, I was diagnosed with ulcerative colitis. In March 2006, at age eleven it evolved into Crohn's disease.
On May 2, 2008, I had my first surgery, during which two-thirds of my colon was removed, and I was given a colostomy (a type of ostomy – see our Ostomy page for definition). Up until my early 20s, I had four more surgeries refining my stoma (opening from an end of the intestine inside the body to the outside surface of the abdomen), as my colon was still showing serious signs of Crohn’s—ultimately resulting in a permanent ileostomy (a type of ostomy – see our Ostomy page for definitions). Adapting to life with an ostomy was challenging, especially as a young woman.
Over time, I learned to accept and embrace it.
Around three years ago, I was declared to be in a period of remission. This ongoing journey has taught me the importance of perseverance, and I remain committed to raising awareness and offering support to others facing similar challenges in their lives. My mission as a Crohn's patient and an ostomate is to raise awareness, encourage others not to be afraid, reassure them that they are not alone, and provide the courage to persevere.”
What is one thing you would like the world to know about life with an ostomy?
It’s not just a surgery; it's a life-saving and life-improving procedure. While there's an adjustment period, like adapting to a new diet and addressing occasional blockages, individuals with ostomies lead incredibly active and fulfilling lives.
However, it's crucial to recognize that many people are unaware of what ostomies are, and this lack of awareness can make it challenging for us ostomates to openly discuss our condition.
The negative stigma around ostomies often revolves around the fact that it deals with bodily waste, a topic that has traditionally not been in everyday conversations.
Overcoming these two areas—lack of awareness and stigma—can be challenging.
Still, with empathy, support, and education, it's possible to break down misconceptions and reduce the stigma to help ostomates lead more comfortable and confident lives.
What is the biggest myth about ostomies?
One common myth is that ostomies result in a constant and unpleasant odor. Many people have compared it to a diaper, but I must say it's nothing like that.
The medical supplies and technology for ostomies are advanced. Any smell is typically only noticeable when you're changing or emptying the ostomy bag, much like when people use the bathroom without an ostomy.
Establishing a suitable cleaning routine is important, but with proper care for your stoma, daily life is not disrupted by odors. You can also engage in various activities, such as swimming, showering, and taking hot baths.
What is one thing you would want someone who’s never heard of Crohn’s or colitis to know?
Coping with an invisible illness can be one of the most challenging experiences, as it often involves concealing our condition while also struggling to open up to others.
Describing our situation, the complex emotions, and the pain we endure can be troubling. Finding the right words is not always easy.
However, having someone who listens and is open to understanding and learning can make a big difference. It empowers us to find our words and gradually become more at ease with sharing our experiences and feelings with others.
Thank you for sharing your story, Sara! You can follow Sara on Instagram @saralevs and see how she is embracing her life, with an ostomy!
Everyone, remember to share your stories this month with #crohnscolitismonth2023.
If you want to test out your knowledge of some Facts vs. Myths about Crohn’s disease and ulcerative colitis, take our quiz