Living with a stoma is not always easy, but Lerato Monyatsi, the founder of the SkirtGirlHiker Foundation and an ostomate since August 2020, is breaking the stigma.

Monyatsi says her life changed completely in July 2020 after months of experiencing unexplained pain, fatigue, and blood in her stool. Doctors initially dismissed the symptoms as haemorrhoids and treated her for that condition.

“Because of Covid and being home, this gave me enough time to do my own research, which led me to believe I had colon cancer, uncertain how far or bad it was,” she says.

She rushed to emergency services when her abdomen swelled up, and she experienced severe bloating and pain, leading to a diagnosis of stage 3 colorectal cancer. Within days, surgeons scheduled her for a laparotomy and colostomy surgery that left her with a permanent stoma.

Living with a stoma for the rest of her life initially left Monyatsi devastated and uncertain whether she would ever enjoy her favourite activities again.

Overwhelmed by fear and unsure how others would perceive her, she turned to the internet for answers, but found mostly negative perspectives on living with an ostomy.

“Most articles surrounding having an ostomy were rather negative. At some point in the early stages after all reading, I prayed about it and decided to change the narrative. It’s not what happened to me but how I react to it. This required a courageous self-introspection, a mindset shift, and a lot of support.”

She says her biggest fears were losing her independence and lifestyle, and facing judgement from the outside world.

“I have experienced moments of embarrassment and judgement because of my stoma. One example is when I’ve needed to use a disability toilet. People often don’t understand that ostomates require that access, and I’ve faced questioning looks or comments that made me feel judged simply for trying to manage my condition with dignity.

“In my early stages, I also had accidents while hiking, times when I didn’t feel the bag slip off until it was too late.”

Challenges in the healthcare system

Outside of having to use facilities for disabled people, Monyatsi says managing ostomy supplies remains a challenge in South Africa, particularly for those without medical aid.

“There are systemic challenges in South Africa that make life harder for ostomates. Public hospitals often provide very limited access to stoma products. Many patients are not properly assessed, or they receive only a few supplies that don’t last a week, let alone a month.”

She adds that this forces some patients to resort to unhygienic alternatives, which can be dangerous and deeply undignified.

Restoring dignity through advocacy

Through her foundation, Monyatsi is breaking the stigma that stomas are something to hide or be ashamed of. The organisation stems from her journey to raise awareness, support, and empowerment.

She raises funds through hiking to support ostomates in need, particularly in rural communities. The foundation also provides peer support, promotes mental wellness, and raises awareness about stomas to restore dignity and demonstrate that life with a stoma can remain fulfilling.

Her message to others is simple: Do not ignore the signs, and seek early medical attention if symptoms appear.

“A stoma can save your life, but awareness and timely intervention can prevent complications and give you the best chance at living fully.”

For more information on the SkirtGirlHiker Foundation, visit their website at https://www.skirtgirlhiker.com/about-3-1.