The Beyond Fistula Story
- gilliancastle
- Nov 6, 2021
- 6 min read
Updated: Nov 19, 2021
On 6th May 2021, a few days after I completed my winter bikini challenge for the Birth Trauma Association, and not long after the BBC released the video cataloguing my journey, an email dropped into my account from an unknown sender:
“My name is Nell Maynard and I work with Beyond Fistula, a non profit based in Kenya. We help young women heal and rebuild their lives after obstetric fistula, just like you! Your story is so inspiring and we have passed it along to a few of our girls in our programs who also have a stoma to manage their fistulas.
Are you potentially interested in seeing what we can do together to support this population? I hope so!”
And so began one of the most rewarding, life affirming and eye opening relationships I have ever had.
I was immediately intrigued, and logged onto the Beyond Fistula website ( Beyond Fistula - Beyond Fistula) to find out some more. The Foundation was set up in 2012 by Arielle Matityahu and mum Dr Debbie Matityyahu, after 12 year old Arielle visited Kenya for the first time and saw the horrific suffering of Kenyan women left with obstetric fistulas following difficult childbirth. Just as I was in 2011, the women are left physically leaking bodily fluids (ie, incontinent both ways) while dealing with the significant emotional aftermath of such physical and mental trauma. It was telling that the Foundation was set up at the same time as I was battling my own septic fistula and stoma. I am not sure whether I believe in fate, but sometimes coincidences are hard to deny.
Within a few weeks we had arranged a zoom meeting with Nell, myself and Debbie. I was initially unsure how much help I could be, as I explained that I had just completed a big fundraiser and was reluctant to start any more, particularly in view of the Channel swim fundraiser I was going to launch next year. As so often in life, money isn’t always the answer, and I was able to help in a much more personal way.
Debbie was very passionate and said that the girls in their care suffer from very low esteem, a by product not just of their injuries, but also due to the patriarchal society in which the women live. Despite the injuries not being their fault, the women are often ostracised from their communities, and subjected to increasing levels of domestic violence. The pregnancies themselves are often the result of rape or sexual violence, which both bring their own attendant consequences emotionally and physically. The girls who do end up with stomas are discharged from hospital and sent back to their villages without any stoma products – forcing them to improvise by stuffing toilet paper into their stomas in a vain attempt to prevent poo from leaking out onto their clothes. As a consequence, they are unable to work, and younger girls are unable to attend school, placing further limits on their ability to be self sufficient as adults.
I was naturally horrified, as although I had been aware that developing countries do not have the same access to unlimited stoma products as the British do, I hadn’t thought about the day to day struggle of a woman left with the same condition. A lot of life is about perspective, and our conversation brought into sharp focus my own privileged life.
Debbie explained that there were two girls in particular who she was keen for me to meet virtually. The first was a 22 year old called Metrin, who was so anxious about her stoma bag coming off (as she rarely had replacement bags to put on), that she hadn’t had a shower for the 10 years that she had had her stoma. The second was 11 year old Siantayo, who had had to leave school because she did not have any stoma bags at all. We arranged a zoom meeting for me to meet Metrin and Siantayo when Debbie was next over in Kenya at the end of June 2021.
In July I was in Nottingham with Hollister and Dansac, and my fellow British ostomates, filming footage for the upcoming World Ostomy Day on 3rd October, when the zoom meeting took place. Just prior to the meeting Debbie had shown the girls the BBC video which she said had completely blown them away to see a woman with her stoma bag out in public, and doing activities such as swimming, sky diving and running. I felt a bit nervous as I didn’t want to come across as too privileged, and make assumptions about what the girls did or did not have access to, but I decided to simply tell them how confident I was with my stoma, and how much I trusted my stoma products to do a good job at keeping me clean. The aim at that point was simply to boost their confidence, and to make them realise that just because they went to the toilet in a different way from other people, they were still of value and important.
The topic then moved to Metrin refusing to take a shower, so I stood up, rolled up my top and tugged on my stoma bag to show how strong it is. The girls were both horrified, amused and intrigued all at the same time – it made us all laugh at their reaction. I implored her to try even just a cup of water tricking down her tummy and onto the bag, then build up to a bottle of water, until she had a full shower. I promised her that her bag would stay on and Metrin promised that she would try a glass of water over her bag.
The video ended and I wasn’t sure whether anything I had said had made any difference, or whether I come across as too privileged and unrelatable. Only time would tell.
The following day I received a video message from Metrin…
Shortly afterwards I was contacted by a stoma product distribution company, who had seen my social media platforms and was interested in contributing in some way to supplying stoma products to the girls. A meeting was later set up between the three of us, and I began collecting surplus stoma supplies which the company said it would pay to post out. Unfortunately, the complexities of this within the company structure proved too difficult to overcome, and so I was left with 27kg worth of stoma products kindly donated by ostomates nationwide…but no money with which to post them out. I swiftly set up a Go Fund Me page to appeal for help with the postage….within one week the required £350 had been raised!
I duly sent out the bags, and several weeks later I received confirmation that the bags had been received in Kenya, and were to be distributed amongst the girls in the villages.
Carol Mabeya, a Kenyan social worker who is a key member of the Beyond Fistula team, wrote:
“We are so grateful for the colostomy supply. No words can express how the supplies have reduced our stress and made it so easy and comfortable for our girls in need.”
Such brief words which convey so much. We are so incredibly fortunate in the UK to have unlimited access to stoma products, and it is sobering to say the least to discover how much difference our surplus supplies can make to the lives of people in countries thousands of miles away.
While the bags were being sent out, I had been in discussion with Debbie about a possible visit to Kenya next summer, to co-ordinate with her own yearly visit. I wanted to meet the girls in person, and hoped to regularly post on my social media platforms about the trip in order to gain some publicity for the work of the foundation. Nicola Napier, UK Consumer Marketing Manager for the Hollister and Dansac (main sponsors of my Channel swim), had become a good friend in the 12 months we had been working together, and she expressed an interest in joining me. A meeting was duly organised between the three of us, and a loose date set for June 2022 for our visit. As you can see from the photo I was pretty excited about our plans...
Ideas and plans are now afoot for what we will do when we are out there….watch this space!
**The Go Fund Me page for the postage costs is still open and I will be sending out more bags once I have more money:
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