Living beyond the stoma

15 March 2024
Living beyond the stoma

StomaTips Editor, Tom Allaway, sits down with Petrina Barber to discuss her work starting the Beyond the Stoma movement and her life as an ostomate

Q1: Hello Petrina, thank you for taking the time to talk to StomaTips. Can you start by telling our readers a little bit about your journey as an ostomate before starting the Beyond the Stoma movement?

The vision and idea of Beyond the Stoma was devised even before I was an ostomate. I was diagnosed with advanced cervical cancer at the age of 31, just five months after giving birth. Unfortunately, my symptoms were dismissed as nothing to worry about during my pregnancy. Subsequently, I underwent intensive chemotherapy, radiation and a series of surgeries over the next decade of my life. Although I am now cancer-free, the radiation treatment has resulted in radiation disease, which is incurable and has damaged all the healthy organs in my pelvic region. Throughout my health challenges, I have experienced ruptured ovarian cysts, kidney failure, ascites, a severe case of sepsis and bladder surgery. The disease I have had already meant that I had one bowel resection and had, at that point, avoided a colostomy and, the year before, nearly had a urostomy. Still, the nature of what I live with in terms of pelvic radiation disease meant that at some point, as much as I wanted it not to be accurate, I would end up with one ostomy, if not two ostomies. In 2022, it was inevitable that I would be having another bowel surgery that would result in a stoma formation. In January 2023, I underwent bowel surgery resulting in the formation of a permanent stoma. I kept getting told what my future life would look like, no more weight training in the way I was used to, and I certainly did not see any models represented in mainstream media or in a way that I could relate to with a stoma, so I thought that both aspects of my life would be over.

Finding information about stomas is not particularly challenging; it tends to be from the position of stoma products or accessory companies or ambassadors of these companies. Sharing information is critical to ostomates’ overall quality of life, but I wanted impartial, truly unbiased opinions, which can be hard to find. I also couldn’t see the representation I knew was needed. The struggle with body image for many people post-surgery is real, and a better representation of being able to see yourself in an empowering way was vital to me. Beyond the Stoma was born before my surgery to be the change I needed to see in this space. I wanted people not to be afraid, to embrace their bodies, not view themselves as broken and flawed, but to see that they are more valuable and beautiful than before, given all they have survived. I wanted to bring the Japanese art of kintsugi alive through human form. I also wanted to create a platform where all brands and viewpoints can be represented but never sponsored to take money from companies or products. I did this so that the viewpoint can remain unfiltered and truly unbiased, offering patients the best access to what they need rather than what company has the most significant marketing budget and influence. Beyond the Stoma does not seek to supplant the information and perspectives out there; it actively encourages the continuation of it all. It’s essential to recognise that everyone has value in this space. Instead, we look to augment what’s available whilst being genuinely inclusive and diverse.

January 2023: Petrina in a Dubai hospital room after a photoshoot, knowing her ascites had returned, her kidneys failing again

Q2: Can you tell us more about the Beyond the Stoma movement and what inspired you to create it?

It was critical in the photography campaign to have diversity in health experience and type of stoma. There are many ways in which a person can end up having a stoma, and I wanted all perspectives to be represented so individuals could feel there may be someone to relate to. Typically, urostomies have even less awareness than colostomies or ileostomies, and it was critical to include this demographic and create the first-of-its-kind all-inclusive stoma campaign. Not just a campaign relating to one health condition or one type of stoma. This is ground-breaking. It needed to be brought to life visually to create awareness amongst those with and those without stomas about what life can look like. Individuals are not broken; everybody has a body that’s a work of art and valuable.

In addition to the ground-breaking visuals, I have also launched the official website of Beyond the Stoma, the world’s first non-biased online resource. This platform empowers individuals worldwide to enhance their quality of life with a stoma.

Beyond representation and body diversity, my broader mission entails dismantling stigmas, dispelling fears and correcting misconceptions associated with living with a stoma. We recently hosted Beyond the Stoma’s first live event, an innovative lifestyle and expert-led discussions. Our forthcoming events will offer a fresh approach, poised to revolutionise the stoma-wearing community’s access to holistic support and advice.

January 2023, the next day: 3 litres of fluid were drained from Petrina’s abdomen due to the ascites. The medical team was aiming to stabilise her so she could fly back to the Royal Marsden to get her scheduled surgery

Q3: Petrina, your health journey has at times been incredibly challenging. How do you stay motivated and positive despite the ongoing health challenges and chronic pain?

Even before my health issues, I’ve always had a deeply embedded sense of gratitude in life. I’ve never taken anything for granted and been happy with what I’ve had without feeling guilty working towards what I wanted. This appreciation has always allowed me to be happy with the small and simple things in life. I’ve never had a sense of entitlement, and so it’s allowed me to rationalise the things that continue to happen, whilst knowing it is hard. There was no contract in life telling me this shouldn’t happen. When we see life through a lens of fair/unfair we can become caught up in a narrative that turns us into a victim. I wish things had worked out differently, mainly for my son, but this is what I am dealing with, so it’s up to me to make the most of it. My family, husband and son continue to be my rocks, I am motivated to get back up on my feet each time to go grab life with them and not waste a minute. Fitness has grounded me and developed my self-esteem and confidence where it has been shaky. It teaches me I can cope and get through hard things. Defying odds from a health perspective and fitness capability drives me. I find it motivating to understand a person’s potential despite the challenges they face. I like to test my boundaries and don’t want to waste time on this earth. I’ve been gifted with feeling less than or doing anything other than living to the fullest.

Petrina in gym gear showing her stoma bag

Q4: What specific challenges do individuals with a stoma face, and how does the work of Beyond the Stoma help ostomates address and overcome these challenges?

Each person is totally unique and will have their own challenges, and to the next person, they won’t be an issue. I think it’s important to recognise this nuance in the stoma community and to give people the space to feel seen and understand all emotions are valid. There’s no one right way to live and thrive with a stoma. It’s about supporting people to find the right path for them so they can be happy in a way that’s meaningful to them. Beyond the Stoma is about representation, how you want to be seen, diversity of opinion and experience and sharing that in a non-judgmental space. We want you to access all resources without bias to find what you need. Not what someone tells you that you need. It’s your life. You make the choices, sometimes you need to see and hear that light is at the end of the tunnel.

For me, in terms of challenges, I think it’s a lot of the things that people take for granted or don’t ‘see’. There aren’t many decisions that can be made without thinking through having a stoma. For example, what clothes I will wear, what fits and what I feel comfortable in and how hard it is to find fashionable clothes and dresses now. Carrying spare products because none are available in supermarkets or pharmacies in case of emergency. Thinking about what I eat and drink, if I can accept lunch invites, where the bathrooms are, long car journeys, flying, dehydration. There’s very little that’s spontaneous. So, while it may look like I am living carefree doing all the normal things, there will be a lot of planning that has gone into making it happen, and for me, there is always a little anxiety humming in the background. Having a stoma for me hasn’t made life perfect. You may not have the same set of problems you had before – but it doesn’t mean you don’t have a new set of issues to think through. Everyone is different, and some people do not experience any of this, but it’s essential to recognise and create space for people where having a stoma may not be the best thing that ever happened to you. It’s ok to admit it comes with new issues you must consider.

Q5: As a fitness advocate and model, how do you approach physical and mental strength post-surgery, and what advice do you have for others facing similar situations?

My biggest advice is to recognise the value of strength and fitness at all stages of your life and how it will aid your recovery post-surgery and any injury. Fitness is like an insurance policy no one wants to pay the monthly premium for. Because, it kind of sucks spending money that you aren’t sure will reap any benefit. But when the time comes and you need that insurance policy, you’ll be thankful you paid the premium. Fitness is no different. It should be reframed to understanding that it’s not about what you’re doing in the gym but being able to take the lessons you are teaching yourself and the strength that you’re developing and apply it to your life. If you know you’re having surgery, don’t wait to get to the gym. The stronger your core and overall body are, the quicker your recovery rate will be.

Do not use your limitations as excuses. It’s not to say that you may have to work even harder post-surgery, but staying focussed on gratitude and what you are working with rather than what you can’t do or where you are more limited is not a healthy mentality. Instead, think about it as an opportunity to test your capabilities. Mentally, you may not feel like yourself. As much as I loved fitness, there was not a single part of me that wanted to go back to the gym when I did. I didn’t enjoy the sessions; I was uncomfortable, humbled and frustrated. It was all hard. And it was hard for a long time. I had to stick with it through the slog and suck it up. But I knew that it wasn’t just about the physical; this was about the mental journey post-surgery and not letting the latest fiasco be the thing that defines me

Rediscover who you really are and find a sense of purpose that is meaningful to you. Maybe that is spending time with people you love; if there are activities you can no longer do, don’t spend too much time mourning them; find other new things. I personally spend much more time reading and studying now as between fitness and looking after my son, I can’t be as physical throughout the day. So, I have redeployed my mental focus.

I allow myself to feel sorry for the things that have happened to me for a few minutes, but I never allow myself to stay there. There is a vast difference between acknowledging and accepting emotions and not dismissing or possessing them but wanting to move forward in life. Many people find support in the community very helpful in relating to each other. Dip in or out as much as you need and find the right level. Who you surround yourself with is very important to your own mental health; the more you are around others who cannot express gratitude or be positive, the more you are going to struggle too. The happiest people in life seem to be those who can also give and help others.

Petrina in the gym with her specialist Personal Trainer, Barry Pitts

Q6: Petrina, you’ve faced multiple setbacks and near-death experiences. How has your resilience and determination played a role in your recovery process?

My resilience and determination are core personal attributes that I’ve always had, and without a doubt, I would have succumbed to feeling victimised in life without them. The reality is life isn’t equal for any of us, and it’s not always fair. You don’t need a near-death experience to have understood this. It’s terrifying to be on the brink of death often; even when you are somewhat prepared, this is your reality. But you can’t control the amount of time you get; what you can control is how you choose to spend the time you get given. I am determined to use the time I have, and if I have a shot at recovering, I don’t want to waste it. I want to live, and I deserve, as we all do, to be able to thrive, regardless of what we have endured.

Q7: What are some misconceptions or stigmas associated with living with a stoma that you are actively working to correct through your advocacy efforts?

Overall, there is a lack of representation in mainstream media, fashion and everyday life, so people simply don’t understand what stomas are and what they look like. We’ve seen more of a drive to being open and able to talk about bowel issues with the work done through bowel cancer advocates. But traditionally, bowels and bladders aren’t topics that has been normalised, and people still feel uncomfortable discussing it, so the default stigma can be negative towards what it’s like having a stoma.

There is still a considerable amount of stigma and misinformation surrounding weightlifting, particularly concerning concerns about prolapses and hernias. Consequently, there’s a prevalent belief that certain weights should never be lifted again or that achieving a six-pack is unattainable.

Part of Patrina’s bucket list: modelling in the desert

Q8: Your Beyond the Stoma live events represent a fusion of lifestyle and expert-led discussions. How do these events contribute to the holistic support and advice for the stoma-wearing community?

Stoma wearers face a breadth of issues that relate to quality of life and it’s important to provide a space where topics that aren’t traditionally spoken about or recognised can be covered. It’s about providing information to people that allows them to advocate and make choices for themselves. We don’t tell anyone there is a right way, a suitable product or the right brand. We present options and discuss things to be aware of and look for. For example, we discuss the importance of a site markup pre-surgery and educate people on their ability to play a role in this process. It isn’t something you don’t get a say in (unless you’re in an emergency situation). It’s still your body and what the outcomes can be depending on where your site markup is placed, so this is why it’s important further down the line. This can empower people to feel part of their health care, meaning post-recovery, mentally, you will fare better.

We have experts that we work with specialising in different fields. This is to allow people access to information that they may not have the resources or ability to access independently.

Finding clothes that fit and work for stomas may seem like a simple vanity exercise, but it runs deeper than that mentally. Being educated in how you can style clothes, other people’s experiences and tips on how clothes are actually made and what to look for in materials again means you are empowering people to make their own choices. We want to step outside the traditional power point medical talk. We want to help people live their lives and thrive, and to do that, you need to provide the tools and resources that people can pick and choose from that are not biased through sponsorship. We work in partnerships to deliver our information and are truly inclusive, we favour no company over another in the same way we include everyone’s opinion in the stoma community. There isn’t one person that can speak for everyone. Diversity is critical.

Q9: How do you envision Beyond the Stoma becoming a global resource, and what steps are you taking to empower individuals worldwide with a stoma?

Goes to the point above – we want to be able to give people the tools and resources to pick and choose. We want to empower people and inspire and offer hope through shared experiences. It starts at a grassroots level.
At a broader level, it’s important to start moving the needle on representation. More inclusion in media, TV, modelling and fashion as the norm. It’s starting to happen but it needs to be broader and more inclusive, rather than packaged up in medical awareness and trauma.

A major long-term objective is also to tackle the issue of stoma poverty. There are many people globally who have gone through life-altering surgery and are unable to afford and access basic products and medical needs. They are ostracised in society and face financial ruin, as well as lack any access to medical professionals who can advise, guide or support them. There is a vast demographic that is forgotten and it’s a mission of Beyond the Stoma to shine a light on this and gain the correct support to get stoma products into the right hands and medical care.

Petrina models with her stoma

Q10: Can you share a specific success story or impactful moment from your advocacy work that stands out to you?

Without question, it’s the moments I have had conversations with people or received messages, or emails where a person has finally felt seen and understood, The gratitude in feeling that they are not alone in their feelings, that something that has been done or said has had a meaningful impact on them.

The Beyond the Stoma photo shoot was very, very challenging for the ambassadors. To put themselves in a vulnerable position and be confronted with their bodies and what they look like. I remember Lucy, who I only met for the first time at the photoshoot, saying how much that shoot redefined how she looked at herself, reinvigorated her commitment to wanting the best for herself and her life and investing in herself. I’ve seen her come alive this last year despite having monumental health challenges. She’s thrived, stepped into herself, and actively seeks out helping others. She is awe-inspiring to me and a role model. Every ambassador is a role model to me. They are all incredibly special people in totally different and unique ways. They embody the lesson in life that if you are willing sometimes to do things that feel scary and push yourself occasionally, you never know how that could change your life for the better. I am so proud of every one of them, their personal journeys of acceptance and their willingness and drive to try and help others.

When the photography campaign launched, I had people who didn’t have stomas reach out to me, saying how their perspectives had changed entirely. People even told me that before the campaign, if they found out someone they dated had a stoma, they wouldn’t have pursued the relationship, but now they would. It’s important to understand there isn’t malice in these views; it’s simply a lack of awareness and when we aren’t aware, we tend to think or fear the worst as we don’t understand it. Creating awareness amongst those without stomas and changing perspectives in acceptance is huge.

As a mother, the messages that I have received from other mothers of children who are young people with stomas have been especially meaningful to me. To offer help, support and hope for a parent and their child at such a pivotal part of their lives is a privilege. You want to be able to tell people that you understand it may not be what you would have chosen for yourself, but life as you know it doesn’t have to be over before it begins.

There have been many messages from people who are excited about their future. To have lost that feeling for so long, to be struggling physically and mentally and actually saying to me that they feel ready to pursue the things they want for themselves is incredibly impactful and meaningful to me. To hear someone say they are excited brings me goosebumps because I know that feeling of being so despondent for your life, and to feel excited about the possibility is life-changing.
Personally, I love hearing from people who have started or re-embarked on a fitness journey. No one needs to look like me or do any of the things that I do, but sometimes, visually seeing someone like yourself being able to continue to achieve in the space of fitness can help offer hope and develop someone else belief in themselves. I share my fitness experience because if it can help one person, it will be a job well done.

Petrina in the gym with her stoma bag

Petrina Barber, founder of Beyond the Stoma
Instagram: @petrinabarberstoma