On 5 June 2024, StomaTips Editor, Tom Allaway, and Consultant Editor, Luciana Podschun, had the privilege of inviting the ostomate community and healthcare professionals to Birmingham for the first-ever StomaTips Learning Day.
During the day, we were fortunate to sit down with Mollie Pearce, one of the stars of the hit BBC One show The Traitors, for a Q&A about her stoma story. She offered advice and reflections on her journey so far. We are now delighted to share this interview with our readers.
Tom: Many thanks for joining us today, Molly. Could you tell us a bit about when and why your stoma journey started?
Mollie: I was diagnosed with ulcerative colitis at age 11, but I had been experiencing symptoms for about 8 months prior. My dad also has ulcerative colitis, diagnosed in his forties, so, we were familiar with the symptoms as a family. Ulcerative colitis has affected us greatly.
When I first started getting symptoms, mine was blood in my stools. I thought I’d started my period, but my mum quickly corrected me. My symptoms worsened and mirrored my dad’s, so we suspected ulcerative colitis. We went back and forth to the GP many times, but they dismissed my concerns. My condition worsened, as untreated ulcerative colitis does. When I was finally diagnosed, I was hospitalised for 2 weeks. I fainted and was rushed to A&E, where I had a colonoscopy and received the diagnosis of ulcerative colitis, which we had expected.
From then on, I was poorly on and off, trying new treatments every 6 months. When I was 15, surgery was discussed, but I was strongly against it. I didn’t see many young people with stomas, and the information online was negative. I was worried about how it would affect my life, especially at that age.
I managed to avoid surgery for a while with new treatments, but the cycle of flare-ups and hospitalisations continued. At 18, after a particularly bad flare-up triggered by alcohol, the doctors strongly recommended surgery. I was still reluctant, but 6 months later, after another admission, I was exhausted from the constant illness and anxiety. It was affecting my education, social life and sleep. I decided to have the surgery 2 days later. People ask how I made the decision, but at that point, I felt like I didn’t have much choice. In hindsight, that was probably a good thing because I would have kept fighting it otherwise.
Luciana: What were some of the biggest adjustments and challenges you had to overcome as a new ostomate?
Mollie: It’s different for everyone. Because I had been so unwell, accepting my stoma was a bit easier. However, it was still scary waking up with this new part of my body and feeling uneducated and unprepared. I recommend getting familiar with your stoma while still in the hospital.
I struggled with acceptance, especially in the first few weeks. I would put off emptying my bag and let the stoma nurses do it, which I regretted when I got home. They told me I couldn’t leave until I changed it myself, so I did it one morning, a week post-op. But I definitely wasn’t ready. My main advice would be to give yourself time to adjust, be kind to yourself, and allow yourself to grieve the loss of your old body. It’s a difficult process, but being open with family and friends helps them support you.
Having my stoma during COVID-19 meant no home visits, which made things a bit scarier. But overall, just give yourself time and don’t be too hard on yourself.
Tom: What was your experience with the information available for ostomates? Has it changed over time?
Mollie: The more you look, the more you find. A few years ago, it was harder to find information, and much of it was from older people whose experiences didn’t relate to my desire for a normal life. Information on topics like travelling and sex with a stoma was particularly scarce. It’s getting better now, and I’m also better at finding it. I connect with others through my platform and get advice from them. The taboo around discussing bowel issues still exists, but as we break it down, that knowledge will become more accessible.
Luciana: On The Traitors, were you open about your stoma, and why is it important to raise awareness?
Mollie: I didn’t go on the show intending to hide my stoma, as I’ve always tried to be open about it. It wasn’t something I shouted about, but I didn’t shy away from discussing it when it naturally came up. The show was a great way to demonstrate that you can do anything with a stoma without making it the main focus. Just being on screen with a stoma makes a difference for others who have one. Sharing my story near the end of the show led to many amazing messages from people who felt seen and less alone. It’s important to raise awareness because no one should feel isolated with theSir health challenges. This season of The Traitors featured many disabilities, which resonated with viewers. As a community, we need to continue spreading awareness and supporting each other.
Tom: Did you have to answer questions about your abilities to the cast and crew on The Traitors, or did it all come naturally?
Mollie: Honestly, I haven’t had many problems with my stoma. I’ve adapted quickly and don’t find it to be a major obstacle. I’ve emptied my bag in some less-than-ideal places, so the castle on The Traitors felt luxurious. The cast was amazing, even though many were unfamiliar with stomas. I enjoy educating people, especially since I’ve lost my embarrassment about discussing bowel issues. The crew was incredible and ensured I had everything I needed. I had one leak during filming, which I only noticed when watching it back. It made me miss out on a good conversation, which might have helped me within the show, but that was the only time my stoma affected my experience.
Luciana: As a model, how is having a stoma impacting your relationship with your body? What advice would you give to others struggling with similar feelings?
Mollie: Accepting your new body with a stoma can be challenging. For me, a major issue was weight gain. I had always been underweight due to my illness, but after surgery, I started gaining weight as I became healthier. I also miss having a stomach when I look at old photos. However, my stoma gave me my health back, so I can’t hate it. It has given me this life and these opportunities. My advice to anyone facing surgery is to give yourself time. It’s a big adjustment, and regaining confidence takes time.
Remember, the thought of things is often worse than the reality. I was nervous about wearing a bikini on holiday after my surgery, but my partner encouraged me to try. It wasn’t as bad as I expected, and it even led to positive conversations with other people.
Putting yourself out there can have a positive impact, and once you do it, it’s not as scary as you think.
‘It’s important to educate people who haven’t been affected by bowel diseases and help them understand that it’s not something to be ashamed of’
Tom: What opportunities have you had to raise awareness since being on The Traitors?
Mollie: I’ve had many amazing experiences. Before the show, I had a smaller platform but tried to be open about my stoma. Since then, I’ve received many messages from people who have been inspired by my story or are seeking support for themselves or loved ones with ostomies. I’ve also filmed a segment for Morning Live about stomas and interviewed Mr. Crohn’s and Colitis. My increased social media following allows me to reach a wider audience, and I’m working closely with Crohn’s and Colitis UK. I want to continue pushing myself to be more open on social media, but it takes time.
Luciana: Could you share some tips for travelling with an ostomy?
Mollie: My partner and I are planning a trip to Thailand, which wouldn’t have been possible before my surgery due to my severe ulcerative colitis flare-ups. Packing stoma supplies is a challenge. When we went to Greece, we split my supplies in half. I over-packed, but it was a good learning experience.
It’s important to consider how your adhesive will work in different climates and activities. Start with shorter trips to build confidence and experiment with what works for you. Having a supportive travel companion is also crucial. My partner has been amazing, helping me empty my bag at festivals and other challenging situations. Travelling with someone you trust makes all the difference.
Tom: What still needs to be done to improve the lives of people with stomas?
Mollie: While we’re seeing more representation in media and advertising, there’s still work to be done in changing attitudes. I recently received negative comments on a newspaper article where I was open about my stoma and bowel movements. It’s important to educate people who haven’t been affected by bowel diseases and help them understand that it’s not something to be ashamed of.
We also need to work on reducing the stigma around using accessible toilets. I used to feel uncomfortable using them before my surgery, even though I needed them more urgently then than I do now. Not all disabilities are visible, and everyone should feel comfortable using the facilities they need.
Overall, I think we’re making progress as a community, but it’s a slow process.
Audience member: Young people are so active on social media - how can we, as nurses, better connect with and provide information to this group who might not be accessing traditional support channels?
Mollie: I think updated leaflets and videos featuring younger people would be helpful. Collaborating with patients on these resources could also be beneficial. Perhaps we could even have open chats with nurses to share experiences and feedback. My stoma nurse was amazing, but I think some resources need updating, especially for the younger generation.