In October 2024, StomaTips editor, Sean Boyle, sat down with Chameleon Buddies founder and record-breaking swimmer, Gill Castle, to discuss ostomate awareness, charity work and the importance of hope in adapting to life with a stoma. Gill is the first person with a stoma to swim the English Channel—a feat only surpassed by the fantastic work her charity, Chameleon Buddies, conducts in Kenya, where they provide supplies, support and education to ostomates and women recovering from traumatic birth. All the images in this article have been supplied courtesy of Gill Castle and Chameleon Buddies.
Sean: What inspired you to swim the English Channel?
Gill: My overall motivation for absolutely everything is to prove to my son that his birth, which resulted in my stoma, hasn’t ruined my life. At the time, I didn’t actually realise that nobody with a stoma had swum the Channel before.
It was a very spontaneous idea. As swimming is one of the big fears that a lot of people with stomas have, I thought it would be a really eye-catching way to get attention on women who’ve been injured in childbirth, and show that you can do anything with a stoma.
Sean: How was it, to swim the Channel with a stoma bag?
Gill: Nobody really knew what was going to happen. When you’re swimming, you can’t really feel what’s happening with your bag. You’re not really thinking about it. There could have been issues going on down there and I wouldn’t have known about it. But I also had confidence in my bag. I just couldn’t really see it just coming off. I’d always said, if something major does happen with the bag, I’ll just get out of the water and stay safe—no sense in needlessly endangering your life!
Sean: What was the hardest part of the challenge?
Gill: The fear. I spent 3 years terrified. I am not a natural sea swimmer. I didn’t like being out of my depth. I didn’t like swimming in the dark. I had never done anything like that before. There were a lot of unknowns. And even having completed the swim safely and on my first attempt, I feel like I’m still recovering from living with much fear for such a long period of time.
Sean: How would you say swimming the channel influenced your mindset and ambitions?
Gill: It’s made me realise that literally nothing is out of your reach if you really put your mind to it. I feel very proud of myself. Tackling big scary challenges gives you a lot of confidence, because once you’ve done something, it can never be taken away from you. Even if I’ll never achieve anything else in the rest of my life, I’ve proved a big point to myself. I hope that it’s also proved a point to lots of other people: that you shouldn’t place limits on what you do!
Sean: What advice would you give to an ostomate who might be feeling discouraged or powerless, or is looking for something to motivate or push them?
Gill: For me, what was missing at the very beginning of my journey was hope. If you don’t have that hope that things can get better, and that you are strong and that you can adapt, then it’s really difficult to make any forward progress at all.
When I started, I didn’t really have that hope. But I’ve built my strength and determination over time, and now I’ve had some incredible things come out of it.
Hope is a really positive element that everybody needs, so I would just want everyone to have hope, and believe that they can regain it, if it has been lost.
The fact that you’re still here, this very day, reading this article shows that you have managed to get through tough times.
I’ve also learned that nothing is the end of the world, things that you really think are the end of the world really aren’t. I thought having my miscarriage was the end of the world. I thought having an only child would be the end of the world. I thought losing my job, which I’d always wanted, was the end of the world, or that not having a good pension was the end of the world. I’ve had all these things happen but look at me—I’m really quite happy. I’ve got a lovely life, but this mindset is something I’ve had to work on and develop with the help of those around me. If I can do it, you can too!
Sean: At Chameleon Buddies, what is your mission?
Gill: We are called Chameleon Buddies because a chameleon can adapt to its surroundings and the situations that it finds itself in. We believe people can do that as well. We buddy up with people in order to help them adapt to changes in their life following childbirth injury or stomach surgery. Our mission as a charity is to empower these women by giving them the tools, peer support, community, clinical supplies and knowledge that they need to embrace their new life.
Our nurses from the UK go to Kenya to train nurses and run one-to-one clinics. However, everything is still directed by the host hospital in Kenya—we don’t just fly in there and start telling others what to do. The Kenyan nurses themselves are one of the most essential and talented components of everything we do.
Sean: What inspired you to create the charity Chameleon Buddies?
Gill: I was contacted by an American gynaecologist, Dr Debbie Matityahu, who had set up her own not-for-profit, called Beyond Fistula. There, at the Women’s Gynocare & Fistula Hospital, Eldoret, Kenya, her not-for-profit supports women who have had fistula surgery by putting them through business programme training, so that they can be financially independent.
In Kenya, after you’ve had surgery, you can be ostracised from your community. Girls with stomas can believe that their lives are effectively over, which is a really sad spot to be in.
Debbie spoke to several women who, at the time, had recently seen me complete my swim of the English Channel. She got in touch with me and asked if I could speak to a few of the ladies she had met. During that conversation, I realised that they didn’t have access to stoma bags, so I did a GoFundMe to raise money to send out surplus stoma bags that I collected in the UK.
I realised then, that I couldn’t stop there, as they’re always going to need more bags. There were a lot more women than just those two girls. Nobody was able to donate properly because I wasn’t a charity, so in 2022, I decided to set up Chameleon Buddies to formalise the support.
Sean: What are your goals with the charity?
Gill: One of my passions is peer support, which is also a central focus of the charity. In my view, peer support is just as important as the materials that you need to maintain stomas, because if you don’t have the understanding from people around you, and you don’t have that feeling that you belong somewhere, life can feel really difficult.
What makes Chameleon Buddies different from other international charities is that we place so much emphasis on the human side of things. Yes, the clinical expertise is important and vital, but we’ve found that it is the human-to-human contact that can offer people the most value.
Sean: What are the plans for Chameleon Buddies over the next 12 months?
Gill: We are going back to Kenya on 7 November 2024. Last year, we were a team of four and this year we are a team of six. This year there will be myself and Nicola Napier running the peer support side, Claire Ryan, our stoma nurse and clinical lead, who will be guiding Sarah Duke, who’s another stoma nurse, and Karen nodes, who is a bowel and bladder nurse specialist. We also have Charlotte Watson, who is one of our trustees, who’s going to be helping the nurses and ensuring the supplies are consistently maintained.
The difference with this year from last year is twofold. First, we’ve got the bladder and bowel specialist nurse who we’ve never had before. When we were in Kenya previously, we noticed that all the women were either incontinent or had urinary incontinence, and nobody seemed to be focusing on why that is and trying to help them out of it. It just seems to be accepted in their environment. So, Karen is with us on a fact-finding mission to find out why that is and what we can do to support them.
Next year, from 4 October 2025 to 12 October 2025, 20 of us will be climbing Kilimanjaro, which is going to be really epic. Nine of us will have stomas, and four will have had traumatic birth history. Some of us will have had feet in both camps and others will have other significant health conditions. The climb will be to raise money for the charity, but also hopefully be a lesson to others about showing your trauma who’s boss!