In May 2016, I was diagnosed with colorectal cancer. I was lucky. Detecting the cancer early meant that I required no chemo or radiation therapy and just had surgery, which left me with a stoma and a permanent colostomy bag.
A stoma is an opening in the abdomen that can be connected to either your digestive or urinary system to allow waste (urine or faeces) to be diverted out of your body. It looks like a small, pinkish, circular piece of flesh that is sewn to your body. There are three main types of stomas – urostomy (urine), an Ileostomy (from the small intestine), and a colostomy (from the large intestine). Reasons for getting a stoma range from cancer, Crohn’s disease or ulcerative colitis, congenital (birth) abnormalities, or traumatic events, to name but a few.
It is entirely possible to live a happy and fulfilled life as an ostomate (someone who has a stoma).
Since my own diagnosis, I have run my very first marathon in Chicago and followed this up with marathons in Knysna and Istanbul. I have completed 20 half marathons as well as a triathlon. Living with a stoma – in my case, a colostomy – does not have to be debilitating.
With some tweaks in lifestyle, your life can be as “normal” as you want it to be.
Unfortunately, living a dignified and healthy life for many ostomates also depends on the public health service and the quality of the care you receive.
Differing needs
People’s needs differ and qualified stoma therapists are needed to best meet those needs.
No two stomas are the same. For example, think of spectacles. The function of the spectacles is to help you see better. However, two people cannot really interchange spectacles with the hope of maintaining perfect eyesight. It won’t work for a variety of reasons – from the difference in the lens prescription to the frames not being suitable to the face shape and fit.
Exactly the same applies to the prescription of stoma pouching systems and the related supporting products. What works for one ileostomy will not necessarily work for another.
Keeping an ostomates lifestyle in mind, the dexterity of their fingers, body shape, and positioning of the stoma are some of the considerations that a qualified stoma therapist needs to take into consideration when formulating an appropriate prescription.
Inadequate numbers
Currently, in South Africa, there are an estimated 60 000 ostomates living with either a permanent or temporary stoma. This figure is loosely derived from the number of products being distributed in the ostomy community. However, considering that ostomates in the public health sector may often only receive two bags to last them for a month, whereas ostomates in the private sector can receive as many as 80 bags for the month, this figure is questionable. Some ostomates are often also turned away with no pouches.
Let’s assume for a moment that the figure of 60 000 ostomates is accurate. It is shocking that there are fewer than 100 qualified stoma therapists in both the public and private health sectors to support the needs of the ostomy community. That is 600 Ostomates to 1 Nurse. As a result, the number of ostomates possibly walking around with incorrectly scripted pouching solutions is horrific.
Why horrific?
Let’s for a moment imagine that you have asked an electrician, instead of a plumber, to install your new toilet along with the plumbing required to effectively dispose of the waste dumped into that toilet. How effective will that toilet system be in your home or business?
An incorrectly scripted pouching system can lead to leaks. As an ostomate, we do not have control over when our body discharges its waste. You have all been somewhere in a car, desperately needing to get to a bathroom. So, you squeeze and every bump you hit makes you squeeze even harder. Ostomates do not have the luxury of squeezing. When we go, we go, and in most instances, we are not even aware that we are having a movement.
Now, with a leaking pouching system, urine or faeces can be running down an ostomate’s belly at any moment – severely impacting the person’s confidence and dignity.
Adding to this anxiety in the public sector, ostomates are often given between two and seven pouches for a month. This is vastly inadequate. Imagine someone with normal movement is allocated one or two rolls of toilet paper to last a month. How is an ostomate expected to live a dignified life? How are we expecting to navigate confidently our “new me” with a stoma?
Being an ostomate is not itself a debilitating condition, however, the shortcomings in stoma care and services in the public health sector are creating a “new type” of disability in our country.
Many ostomates have self-isolated because they are not receiving the support, or care, or have no or too few ostomy supplies per month. For an ostomate, an ostomy bag or pouch is their toilet. Imagine the indignity of going through life without access to a toilet.
The life and challenges of ostomates
Through our work at SASS (The South African Society of Ostomates), we are acutely aware of the challenges ostomates face – the trauma and the indignities many suffer, often with tragic consequences. In one case we were involved in, a man was told that his surgery would be life-changing. To quote his wife, “The doctor was not kidding. For six months, he tried committing suicide. Last week, we buried him.”
In another case, we received a call from *Joe. He was in tears. It has been four months since he received product (pouches) from his health facility. (I’m not mentioning the hospital because these patients are then victimised). Joe had been using Niknaks packets or bread plastics to capture his body’s waste. He told us he can’t leave his house, had not been working for months, and did not have food. Another ostomate in Johannesburg is currently in hospital with an infection. She has an urostomy. At her clinic, she is the only patient with an urostomy and as a result, they are not ordering product for her. They then gave her a drainable colostomy bag to use. Unfortunately, this can’t work, resulting in the infection she is now treated for.
A 48-year-old woman has been confined to her house to escape the indignities in public. She told us she is tired of the years of fighting with the hospital to give her the correct bag. She now works remotely, orders her groceries online, and does not leave her home.
These are just a few examples of the many challenges faced by our community, especially in the public health sector. Personally, I am angry at the situation we find ourselves in.
Recently, I was invited to attend a Stoma Management Workshop by the European Ostomy Association in Zambia. In attendance were nurses, doctors, and representatives from the Zambian Health Ministry. In Zambia and Zimbabwe, in particular, there is no product distributed in the public sector. In the private sector, there are one or two individuals selling product at ridiculous prices – from $15 per bag. In Zimbabwe and Zambia, the ostomy communities depend on a handful of people travelling outside the country to distribute supplies that they have received as donations from either Europe or the United States. Simply put, their ostomy community is living off handouts.
As a country and a supposed leader on the African continent, we in South Africa can and must do better.
Addressing challenges
The public health system in South Africa often falls short of providing the necessary dignified care to ostomates.
That is why in June 2020, two other ostomates and I found SASS. SASS is a non-profit organisation supporting ostomates across Southern Africa to facilitate a “holistic” approach to ostomy patients whilst advocating for the rights of fellow ostomates throughout the country.
We advocate for an alignment of the standard of stoma care and services across South Africa – in both the public and private health sectors, thereby aligning to the global standards set out by the International Ostomy Association (IOA).
SASS also supports ostomates and their families with their transition to their “new normal”. Ostomates of all kinds are welcome to become members of the organisation, whether you have an urostomy, colostomy, or ileostomy and whether it is permanent or temporary.
As an organisation, we have come to realise that among the greatest challenges in the ostomy community is a lack of education and the stigma associated with living with a stoma. As part of our education drive, we have developed what we call The Ostomates Survival Guide which is available for free in either Hard Copy or as a Download. Our next step is to get this book translated into Zulu and Xhosa.
However, our biggest challenge remains advocating for the dignity of our ostomy community amid serious shortcomings in the public health sector.
Practical solutions
Improving care for the ostomate community need not be complicated. There are some relatively simple and practical initiatives that the health department can take.
First, the department and the Nursing Council have to acknowledge that the complexities related to nursing a stoma patient require a specialist. I refer to the example above where you will not ask an electrician to install your new toilet. In high-income countries, stoma care is seen as a speciality. Why not here in South Africa? Recognising stoma therapy as a speciality will encourage more nurses to pursue this as a career opportunity.
We need an audit, similar to a census, to establish the size of the ostomy community. If you look at the South African ostomy community, we are working with estimates. The estimates are low and most likely a gross underrepresentation, which means the need cannot adequately be addressed. Currently, every hospital we have spoken to can say they have a new ostomate every month, yet they cannot say how many ostomates or how many of the stomas relate to cancer or Crohn’s disease, and so on. The lack of accurate numbers is hindering effective advocacy.
There is a need for education and awareness amongst both the nursing and the patient population. This lack of understanding reinforces the stigma associated with living with a stoma. The world embarked on a huge educational campaign for HIV. Today, there is hardly a community out there without some level of awareness of the disease. We need to have a similar campaign to educate our communities about ostomy care. For example, there should be no reason for an organisation like ours to have to get involved at a school that does not want to admit a learner because she has a stoma.
Also important is that ostomy medical supplies should be procured from providers with the necessary expertise who meet set standards, especially as it relates to quality. Often, companies with no background in ostomy supplies and no after-sale service are allowed to bid, which creates more risks for the ostomy community who depend on these products.
I’m challenging the South African Health Minister, Dr Joe Phaahla, and his department to engage us at SASS so that we can find constructive and effective ways to restore and preserve the dignity of our ostomy community and improve the quality of care provided by public health facilities.
*Jacobs is a founding member of the South African Society of Ostomates.