The stigma of stomas

There are 46,000 people in Australia living with a stoma and many of them struggle to live freely without shame. The WA Ostomy Association wants to change that. 

By Eric Martin

One of the procedures that many people, including doctors, shy away from is the thought of completely losing the ability to go to the bathroom normally. 

The thought of having to use a bag, strapped to their abdomen, to collect their waste can jolt potential patients into shock or dismay.

The creation of a surgically formed fistula, be it a colostomy, an ileostomy or urostomy, brings a range of issues to the surface, not just for the practical operation and maintenance of the stoma and appropriate bag but also psychologically. And in a huge State like WA, managing those impacts can be especially challenging.

Medical Forum spoke with stomal therapy nurse (STN) Tania Norman from the WA Ostomy Association, one of 26 specialist nurses who assist some 4000 ostomates across WA about the obstacles many people still face trying to arrange appropriate care for a procedure that was first performed in 1776.

“Stoma surgery is a life-changing event, and even though patients can live an otherwise normal life thanks to modern advances in care, they still need to make significant adjustments to their lives,” Ms Norman explained.

“A stoma nurse is pivotal in the preparation prior to surgery: people need to be shown what the bags are like, what their stoma could potentially look like, what they could expect after the operation, and most importantly, how they can manage it after returning home. 

“The nurses in the hospital will follow patients up post-surgery to check that everything is healing and then choose the right bag for them to wear. If you don’t have the right fitting bag, then leakage can occur, and you can imagine the effect that has. Some people won’t leave their house because they’re worried it could happen. 

“Not only is that horrendous for their quality of life, but it also impacts their skin, which breaks down very quickly under those conditions. Trying to get anything to stick on it is almost impossible, which starts a vicious cycle if there is not intervention.

“Patients’ mental health can really suffer, and the post-traumatic stress is often particularly pronounced for younger people.” 

So, situating the stoma appropriately for the ostomate’s needs is important. Putting it in a position where that person can see it away from any creases or folds in the abdomen, or scar tissue that might interfere with the bags sticking properly.

Ms Norman pointed out that lifestyle factors were the other important consideration when working out the best location for a stoma, including recreational activities such as sport and more private pastimes such as sex. 

“There are many things that STNs take into consideration when placing the mark for a stoma on their patient and, basically, we say that you should be able to do anything with it. You can take your bag off, you can shower with your bag off, swim with the bag on, you can jump out of planes – you can do all those things if the underlying reason why you’ve had a stoma isn’t impacting the rest of your life.

“But those who have emergency surgery and the surgeon’s not familiar with those factors, it frequently becomes problematic for the ostomate.” 

Ms Norman said for people in regional centres, it was often an emergency procedure, with little or no warning for the patient. A fact further complicated by the lack of any STNs employed north of Geraldton.

“These are often among the most impacting procedures for ostomates. Yet we have over 1000 members who do not have direct access to the support of a STN. To address this issue, I run a stomal therapy clinic at the association and travel across the State running stoma clinics and providing education sessions to health professionals.”

And during her travels, she regularly encounters what would normally be considered outlandish breaches of patient care in a metropolitan setting. 

“For example, there is an awful story from the Pilbara of a lady who had to go in for emergency surgery who woke up with a bag, no stoma nurse onsite to prepare her as to what to expect afterwards and, because it was the weekend, she was discharged with three hospital bags to wash out and a phone number of the stoma nurse at Royal Perth Hospital, which she couldn’t do until the following Tuesday. 

“She taught herself how to change her bags by watching YouTube, which while great, is also absolutely horrendous in terms of outpatient care. I met her again some years after and luckily, she was able to have her stoma reversed, but she was still suffering post-traumatic stress from her ordeal.

“Kalgoorlie’s another centre where it’s been historically challenging for ostomates. Last year, there were six new stoma procedures performed, with no stoma nurse to support them. Kalgoorlie is a major regional hub – we’ve got nearly 45 ostomates in total living in that region.”

Ms Norman has been traveling to Kalgoorlie annually for eight years to run the stomal therapy clinic and was thrilled that there were now two nurses at the local hospital that had completed the course – and were planning on staying in the region. 

“If there is someone that has to have that surgery, then that care can be provided as part of the outpatients services,” she said. “But otherwise, if you are in a smaller regional community, the expectation is that ostomates fly to Perth and ideally stay for a good six months while they are going through the introduction to care, training, checkups, and refits, as well as undergoing monitoring for complications, which are most likely to occur 2-3 months after surgery.

“But as you can imagine, most ostomates don’t stay that long. You are taking them away from their family and everyone else in their support network.”

Ms Norman explained that even though some hospitals, such as RPH, could provide telehealth services for ostomates living in areas north of Perth, it was not on par with the hands-on care that ostomates could get with regular follow-up in the city.

“We have over 2,500 different products to choose from, and we are incredibly fortunate in Australia that they are government funded. But if you are not given the correct product in that first instance, then you’re already behind the eight ball, and as most people require a stoma over a relatively long period of time, the requirements for the bag can also change,” she said.

“That’s why we recommend regular reviews at two weeks post-surgery, 6-8 weeks, 12 weeks and then at six months until the end of the first year. Following that, we recommend a review every 1-2 years, because if you put on or lose weight, your stoma changes shape and will need refitting. 

“Similarly, if you develop a hernia, which unfortunately is a common complication, then the stoma changes again. There are things that can happen that people, and many doctors, are not fully aware of.”

Ms Norman explained that providing stoma services in the bush was also potentially more challenging given the tough rural mentality that exists in the regions. 

“The rural mentality is that ‘Well, we don’t have access to these facilities – this is what we’ve got, and this is what we put up with.’ They are much less likely to go to a doctor or to approach a nurse, or to reach out,” she said.

“When I started doing these rural trips, I met a gentleman in Carnarvon, who’d had his urostomy for six years and every night since had wet the bed. He hadn’t thought to reach out to anybody. When I reviewed him and put him on a different bag, he had his first dry night in six years – and has been dry ever since.”

The other issue that Ms Norman highlighted was that many GPs were unfamiliar with stomas and were hesitant to advise because they don’t know what to do with it.

“It is still a taboo subject. I have worked in breast cancer nursing, and everyone will talk about breast cancer, but even though we tell our stoma patients that there is no reason why they cannot live a normal life, people will still dramatically change their lives because they don’t want others to know that they have a stoma.

“And, unfortunately, that stigma has partially transferred to the medical profession in terms of service provision.

“If patients are going back to their surgeon for review and they happen to mention that they have a problem with their stoma, they will often be told to contact the STN.”

The WA Ostomy Association is negotiating to offer specific training for GPs on stoma care and has made inroads on addressing the initial stigma by making presentations to medical student studying at Curtin University and UWA.

“We’re hosting third-year medical students here at the association and are able to discuss stoma care right at the start of their education. I can be very hit and miss during the doctors’ hospital training, whether they actually see a stoma formed or deal with an ostomate. We would like to see it incorporated into the actual program and then be offered as CPD points as well.

“It’s important to realise there are several reasons why a patient might need a stoma, such as cancer, inflammatory bowel disease and Crohn’s. We have had people who’ve been sick for years with Crohn’s disease and have put up with it because to them, they would rather die than have a stoma.

“But once the procedure is done – because they have no choice – they say they wish they’d had it done years ago, because suddenly, they feel well again.

“Embracing your stoma does help people to deal with it psychologically and we now have ostomates, including weightlifters and even women in bikinis, willing to take their bag off and talk positively about it to help raise general awareness.

“But then there are also those people where their best friend of 50 years doesn’t even know they have had a stoma for the past 20. 

“No one talks about it, even though nationally there’s 46,000 people with stomas. There are more than a million ostomates in America, it is not something that just happens sporadically.

“The lack of knowledge is quite apparent and that must change.”