“I don’t even want to leave the house. I am scared that I might leak urine or faeces in public – this usually happens when I am at home. I am stressed most of the time, and live with consistent fear and worry. Most people don’t  even understand the daily challenges I face,” says Heather White.

50-year-old White is living with a stoma. This is a small opening in the abdomen which is used to remove body waste like faeces and urine into a collection bag, known as colostomy pouches, urostomy or ileostomy pouches. White got a stoma in July 2014 after being diagnosed with Crohn’s disease, a type of inflammatory bowel disease.

For over nine years now, White has used public health facilities. On a monthly basis she goes to Chris Hani Baragwanath Hospital in Johannesburg for ileostomy pouches. But she doesn’t always get them. “Some months we get two to five. In July I was lucky because I received 10 pouches,” she says. 

Before then, she hadn’t received the ileostomy pouches since November last year. Every time she’d gone to the hospital, the bags were out of stock. 

The unemployed mother of one from the East Rand tells Health-e News that on a normal day, if she is not having a running stomach, she uses two pouches. One in the morning and another in the evening.

But for the past 10 months, White has been forced to use a single ileostomy pouch for an entire day or sometimes for two days, which she gets as donations from other stoma patients who get their bags from the private sector.

White says that the shortages of pouches in the public health sector started years ago, but now it has escalated. “Back then, at least they would give us a few pouches, though they were not enough to last for an entire month. But now the situation is worse as we are not getting any at all.” 

Not having enough pouches 

“Not having ileostomy pouches is like living in a home without any form of sanitation. It is tough, I am really struggling. Some days I am forced to use normal plastic bags, taped to my body, as an alternative. It’s not ideal but I have no other choice,” says White.

Faizel Jacobs is a founder and coordinator of the South African Society of Stomates (SASS), a non-profit patient advocacy organisation. He says the organisation has been receiving patient complaints about shortages as far back as September 2022. 

“We have been raising this issue with both the National Department of Health and the various provincial departments for quite some time now. But nothing is ever done to address this situation. Stoma patients are really facing difficulties without the colostomy bags. These bags are a must have for people like me,” explains Jacobs.

Jacobs, who is from Cape Town, is also a stoma patient. He says, unlike fellow ostomates (people living with a stoma), he has medical aid which pays for the colostomy bags he needs. But he is concerned about the ordeal other patients have to face almost on a daily basis.

“We cannot continue like this, stoma patients are also human beings and they need to be treated with dignity. Their quality of life depends on the availability of colostomy bags. Without these bags their lives and health is always compromised,” says Jacobs.

Main causes of stomas

An Eastern Cape based stoma specialist doctor, David Marks* tells Health-e News that stomas are done to divert faeces from reaching the rectum and anus. Stomas can either be temporary or permanent.

“Various instances like trauma to rectum and perineum will require temporary diverting stoma which is usually reversed in three to six months,” explains Marks. 

He says that cancer is the leading cause for the performance of stomas in South Africa. Marks says that not having colostomy bags for ostomates compromise their quality of life. But using alternatives such as plastic bags does not necessarily lead to infections.

“But as you can imagine a plastic bag will not stick well to the skin. And the quality of life would be severely affected due to the smell, soiling of clothing and bedding. The smell does not affect the stoma patient only but other individuals in the surroundings,”  he says.

Lack of information available

According to Jacobs, a major cause for concern is that there is no recorded number of stoma patients in the country. There is also no record of how many healthcare workers are actually trained to offer specialised healthcare services to stoma patients.

Figures cited in previous years put the estimates of stoma patients in South Africa at 60,000. But Jacobs says, without a registry, one can only speculate how many ostomates there are in the country. The number is likely much higher.

“It is a concern which we have. Look, we are able to get numbers of how many people are living with HIV, TB, cancer, diabetes and other conditions. But our government does not even know how many stoma patients we have in the country,” says Jacobs.

White says that her life has completely changed since she had a stoma. The shortages of ileostomy pouches have only made the situation worse. 

“I no longer even go to the shops. All I do these days is to stay at home and worry about where I am going to get the next pouch. What will happen if no one donates? Will I be able to use a plastic bag for the entire month? These are some of the questions I keep asking myself,” explains White.

Jacobs has pleaded with the South African government to intervene and find solutions to the ongoing shortages of ileostomy pouches in the public health sector. Attempts to get a comment from the National Department of Health spokesperson, Foster Mohale failed.-Health-e News.

*Not his real name