An intensive care nurse's life was transformed by a stoma bag. Now, she is working to banish the stigma surrounding digestive diseases by starting an Instagram and a social group for fellow bag wearers.
Already attracting 30 members to her first "Bowels and Brews" meeting last December, Bethany Fenwick revealed how she accepted her stoma bag the moment she saw it, knowing that the alternative meant rushing to the toilet 40 times a day.
Suffering with crippling Crohn's disease, Fenwick spent her “life on the loo" with debilitating diarrhea.
Determined to show people that life with a bag was far better than the alternative, she started an Instagram called "Beth Without A Bowel."
By sharing pictures of her stoma bag, Fenwick soon gathered 1,300 followers.
“I want to show people that you can carry on life with a stoma bag and it's not as bad as people might think," she said.
“People feel sorry for me now, but I tell them not to, as my life's great."
“Instead, feel sorry for the way I used to live, when I used to go to the toilet 40 times a day!" she added.
Fenwick was just 14 when she first experienced symptoms of Crohn's disease.
“I started having diarrhea all the time. I'd be going to the toilet up to 40 times a day and ended up feeling faint and really sick," she explained.
Stubbornly ignoring her symptoms, she tried to just “get on" with life hoping they would go away.
“Obviously they never did. I started having embarrassing accidents at school and I couldn't ignore it anymore," she said.
In the summer of 2005, Fenwick had a series of tests at Darlington Memorial Hospital in County Durham and was diagnosed with ulcerative colitis.
“I was relieved to finally have a reason for why I was going to the toilet so much," she said.
“But, being so young and knowing I had an illness linked to bowels I just thought, 'This isn't for me, no thanks.'"
While the medication eased her symptoms, there were still frequent incidents when Bethany struggled to control her bowels.
“One of the worst accidents I've ever had was when I was about 19 and I worked in a hairdresser's," she explained. “We went on a work weekend away to Harrogate in North Yorkshire and there were a few of us sharing an apartment."
“During a night out, I suddenly felt like I needed to go to the toilet, so I rushed back to the apartment – but I didn't make it and had an accident."
“When I got back, I jumped in the shower, then all of my workmates came back and were like, 'Why are you having a shower?'."
“I was too embarrassed to tell them, so I just had to pretend I wanted a shower in the middle of the night. They must've thought I was so strange!" she continued.
Finally, in 2012 Fenwick was diagnosed with Crohn's disease at the city's James Cook University Hospital.
“I was given a completely different treatment plan and I trialled a stronger immune suppressant drug, which I was given through an IV drip every four to six weeks," she said.
“I also had to self-inject once a week with methotrexate – which was a low dose of a chemo drug. That didn't work to suppress the symptoms, it just made me feel sick."
“So instead, I was given Humira, a drug designed to reduce the symptoms of Crohn's, which worked better. But I was never completely symptom free, the medication just made my life more liveable."
But the worst part was taking steroids.
“It was hideous, the single worst part of it," she said. “The steroids made me so anxious and I couldn't stop crying."
“I also looked really puffed up. Now I've stopped taking them people say to me, 'Oh, you've lost loads of weight.' I haven't, I just look a lot less puffy."
And after giving birth to Violet in August 2016, her symptoms stopped her from doing everyday things with her daughter.
“I only took Violet to the park four or five times before I had surgery, because there was no toilets nearby" she said.
“Or, if I took Violet to her swimming lessons, I'd have to leave halfway through and take her with me to the toilet, because I desperately needed to go."
In 2018, a consultant told Fenwick she had come to the end of her treatment plan and there was nothing else that could be done to help her symptoms.
“They told me there was nothing else they could do for me unless I wanted to have a stoma bag fitted," she said.
“It felt like the world had come to an end and I just said, 'No way, I'm not having that done.' Being a nurse, I knew exactly what having a stoma bag fitted meant – and that scared me."
She asked her doctors for a few more months of treatment, but they said her condition would not improve.
“I couldn't even leave my house for five minutes without having to drive home, because I suddenly needed the loo," she said.
“I remember one time, driving to work and I had an accident. I popped to Tesco and bought some new knickers and some wipes, got changed and cleaned myself up and went to work."
“I was so stubborn. I was determined I was just going to carry on as normal and get on with it," she added.
“I knew I couldn't carry on like that, especially having Violet, I wanted to get better for her, and I knew I needed to do something sensible about it."
On 2019, Fenwick finally agreed to have a stoma bag fitted.
“When I was going in for the operation I was petrified – I felt like I was waiting to die," she recalled.
But, after a six-and-a-half-hour operation she awoke with an entirely different perspective.
“I remember just looking at the bag for the first time and immediately accepting it," she said.
“Anything was better than how I'd been living – because I'd left it so long and made myself so ill, so I just accepted it."
But it has not been plain sailing. She ended up in hospital after an incident at her 2019 work Christmas party.
“My stoma prolapsed, so my small intestine was coming out of my insides and into the bag," she said.
“I turned up to the hospital in a sequined dress, feeling a little bit tipsy and the doctors had to manually put the intestine back inside me. I think being a bit merry helped in that situation!"
Determined to help others who shared her fears about living with a stoma bag, Fenwick launched "Beth Without A Bowel", to demonstrate how it is still possible to live a normal life after surgery.
“There's such a taboo about toilet talk or bowel diseases and I want to help stop that by showing you can still live a normal life with a stoma bag," she said.
“I had such a positive reaction to my Instagram page – it's helped me, and it's helped others in a similar situation too – it's normalizing it. I used to be so embarrassed about it – but not anymore."
Fenwick was also inspired to launch her Instagram after all the information she received from the doctors was about older people with stoma bags.
“I started looking on social media, because I wanted to see how young people who work, have kids and want to look nice and wear nice clothes lived with a stoma bag," she said.
“That was when I realized there wasn't much out there, so when I knew I was going to have one, I started my Instagram."
Inspired by the community she met on Instagram, Fenwick set-up her meet-up group "Bowels and Brews" for those living with stoma bags. Hosting her first event for 30 attendees in December 2019.
“I was speaking to some really lovely girls on Instagram and I just thought, 'Why not meet up?'," she said.
“But they wanted to come, and I realized it was getting bigger. We couldn't all just turn up at my local Costa coffee shop, so we booked a Travelodge conference room instead," she said.
Her family even became involved and turned the get together into a fundraising event.
“My sister, Jessica, baked loads of cakes and we held a raffle to raise money for Crohn's & Colitis UK," she said. “We also had an underwear brand for people with stoma bags attend and talk about the products they sold."
“I wanted there to be nice stuff for people to look at – I didn't just want everyone sitting around saying, 'We've got stoma bags, and this is terrible. 'I wanted to make it a positive event," she said.
Fenwick now hopes to host quarterly "Bowels and Brew" meet ups as she continues to work hard to lift the stigma associated with bowel diseases.
“Yes, having a stoma bag has its ups and downs. Mine has leaked and it prolapsed, but my life is a million times better than before," she said.
“I wouldn't change it for the world – it's given me a better life and made me a better mother. And I want to show other people you can still very much live your best life with a stoma bag."
To find out more visit: Instagram: @beth_without_a_bowel
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