Empowering ostomates: NPO advocates for dignity, access to care
“Being told you need a stoma can be overwhelming, but you are not alone. There is help, guidance and a community that understands.”
For thousands of South Africans living with a stoma (an artificial opening created in the abdominal wall during surgery), access to quality healthcare, proper appliances and community support remains challenging.
The South African Society of Stomates (SASS), an NPO dedicated to the advocacy and well-being of ostomates (those with a stoma), works tirelessly to change this narrative.
Founded in 2020 by Heather White and colorectal cancer survivor Faizel Jacobs, the SASS is a beacon of hope for ostomates across SA. White, a 51-year-old health and safety officer from Modder East Orchards, has firsthand experience of navigating life with a stoma.
Having received her permanent ileostomy (the end of the small intestine (ileum) is brought out through an opening in the abdominal wall, creating a stoma) in 2015, followed by a urostomy (procedure to reroute urine away from the bladder to exit the body through a stoma) in 2020, she embraces her journey with optimism.
“From the day I received my ‘Gucci pouch’, I embraced it, knowing it would change my life. I work full-time, enjoy life to the fullest, and advocate for others to see the bright side of their journey,” says White.
The SASS provides emotional and educational support and addresses some major challenges ostomates face, including limited access to medical supplies, financial constraints and the lack of awareness among healthcare providers.
Many medical aid schemes do not fully cover ostomy appliances, leaving patients struggling to afford life-sustaining products. Additionally, in public healthcare, ostomates often experience long wait times and insufficient post-surgical care.
To bridge this gap, the SASS offers vital resources like the Ostomates Survival Guide Book, an essential tool by ostomates for ostomates. It provides practical advice and reassurance, helping individuals and their families transition into life with a stoma.
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Education and clinical training
Recognising the critical role healthcare professionals play, the SASS holds training sessions nationwide to equip nurses and clinicians with the knowledge to provide specialised ostomy care. One such recent workshop in Delmas brought together healthcare representatives from across Mpumalanga.
The topics covered included gastrostomy care, wound management, stomal therapy and practical demonstrations on pouch cutting. Industry representatives from ConvaTec, BBRAUN, Coloplast SA, Ample Resources, and Hollister/Hartmann also attended, showcasing essential products and innovations in ostomy care.
Clinical support through qualified stoma nurses
For the last 18 months, the SASS has had its qualified stoma nurse, Jolanda Jansen van Noordwyk, offer crucial clinical interventions and personalised support for those in need. This service ensures that ostomates get the necessary medical attention, guidance on stoma care and help navigating the healthcare system.
You are not alone
A stoma can be life-changing, but with support, ostomates can lead fulfilling, independent lives.
“Being told you need a stoma can be overwhelming, but you are not alone. There is help, guidance and a community that understands,” White emphasises.
For more information about the SASS, visit sasstomates.org.za or follow them on Facebook, Instagram and LinkedIn @sasstomates.
