A Roodepoort mother is speaking out about life with a stoma after childbirth, saying the condition has changed how she mothers, works and manages her life. 

Phemelo Seane, 28, says she has been living with a stoma since 2024 after suffering severe childbirth complications at a local public hospital following the birth of her second child. She asked not to disclose the name of the hospital out of fear of reprisal. 

Seane says doctors told her she had suffered a fourth-degree tear, the most severe type of vaginal tear during childbirth.

The injury can affect bowel control and in Seane’s case required a colostomy. During a colostomy, an opening is surgically created on the abdomen, called a stoma, to allow waste to leave the body and be collected in a bag.

Seane, a mother of two, says the condition has affected everything from caring for her children to sleeping, working and moving in public spaces.

“Motherhood has been everything at once, the hard parts and the beautiful parts.”

Seane says the stoma was meant to be temporary, and that doctors still believe it can be reversed.

Living with a stoma

Seane says the biggest challenge after the operation was adjusting to a body that no longer felt familiar. 

Recovery meant sleeping on one side for almost three months, dealing with leaks and learning how to manage the stoma bag while caring for two young children. 

“The adjustment on its own, having to take care of you and the little ones at once has been a challenge, especially with breastfeeding,” she says.

She says emptying the bag, changing it, managing skin irritation and finding comfortable clothes all became part of her new routine.

Seane says living with a stoma has affected her confidence and body image, and that being in public spaces has been difficult because of the fear of leaks, odour and people’s reactions. 

“I was often in and out of hospital after the operation because of complications including a hernia, a blockage and a sphincter repair surgery. I was later referred to another public hospital for follow-up treatment.” 

Work, cost and daily struggle

Seane says she was referred to Charlotte Maxeke Hospital in Parktown for follow-up treatment, and still goes for check-ups every two months to see whether her sphincter muscle is healing. 

“I use a stoma bag, tramadol for severe pain and a powder for the skin irritation,” she says.

Seane recently found work, but says standing for long hours, frequent bathroom breaks, leaks, fatigue and the emotional strain have made it difficult to cope. 

The condition has also placed a financial burden on her family because the hospital does not always have all the supplies she needs, according to Seane. 

“I only get the bag and tapes from the hospital. Then buy the support belt, skin barriers and powders when they sometimes can’t provide for me,” she says.

Seane says she spends about R2 000 on medical supplies each month, when she does get stoma bags from the hospital, but the out-of-pocket cost can go up to R5 000 when the hospital can’t supply her with bags.  

Learning to live differently

For Seane, accepting her condition and adapting to a new life has not been easy.

“My family and children give me so much support,” she says.

She says there’s a big need for more public awareness and support for people living with a stoma.

Seane calls for better education on how to manage a stoma at home, dietary advice to avoid blockages and dehydration, and better access to supplies in public hospitals.

She says the stigma around ostomates, people living with a stoma, is also hard to navigate.

“Be kind to us, it’s not easy. Stop bullying us in public spaces too.”

The South African Society of Stomates (SASS), a non-profit organisation formed by ostomates across Southern Africa, says stoma care is also about dignity, including reliable supplies, trained nurses and support that helps patients live with confidence.

The organisation says public stoma services are under pressure, with too few trained nurses in some public hospitals and frequent supply shortages.

Seane says she still struggles with her physical appearance and hopes to have her colostomy reversed one day.