For several years, Casey Davies lived a life full of struggle as a “hidden disability” led to her constantly being sick, losing her teeth, losing weight at a rapid speed, and leaving her hospitalized on a number of occasions.
Reflecting on a difficult 20 years, she said: “Today is a good day.” After what she has endured, nobody could begrudge her a day of comfort.
After suffering with undiagnosed Crohn’s disease for all of her teenage life which doctors believed was just irritable bowel syndrome (IBS), Casey, from Pontypool in Wales, finally underwent an operation at the age of 30 which she didn’t even know she needed and which has left her with a bag attached to her stomach.
Wales Online writes that the nursing student tells of feeling “in absolute shock” when she woke up from what she thought was a routine operation with a stoma bag connected to her abdomen to allow waste to travel out of her body.
Casey said: “I was really ill throughout my teens and I’ve been bad for much of my life. I always had stomach pains and diarrhoea as a child and was told it was IBS and to go on a high-fibre diet.
“It was only while pregnant when I was 21 that I really fell, really ill and was finally diagnosed with Crohn’s. My symptoms became a lot worse and I lost a lot of weight because I couldn’t eat.
“But for Crohn’s it is really bad to be on a high-fibre diet. I felt let down and as though some of the pain I was in could have been avoided.”
Crohn’s disease is a type of inflammatory bowel disease which causes inflammation of the digestive tract which often leads to abdominal pain, fatigue, malnutrition, and severe diarrhea.
“For 20 years I suffered really awful symptoms,” Casey continued. “For that long it had become normal for me to suffer bloating, then diarrhoea, then constipation. It is unpredictable – one day you can have one struggle and the next the complete opposite. I’ve lost many of my back teeth due to vomiting so much.”
Prior to the pandemic Casey, who hasn’t been able to do her day job as a retail assistant in Cwmbran due to her condition, said she had coped with her battle with Crohn’s because the healthcare she relied on was frequent. But over a grueling two years where her access to those nurses was more limited she says her condition became “out of control”.
“At the beginning of last year [treatment stopped] and it started to get really bad from June and July,” she explained. “My stomach pains got a lot worse and I couldn’t go to the toilet at all really. I felt like I was being ignored because I was contacting my nurses and I wasn’t receiving the help I needed.
“I eventually ended up in hospital after a particularly bad flare-up. I couldn’t take the pain anymore. I had CT scans and was put on a steroids drip.
“They sent me home after a week and put me on Tramadol because I wasn’t coping. My parents had to help me every day. I felt depressed because I felt ignored.
“I understood the pressure on the hospitals due to Covid but even my local GP couldn’t help me because they said I had a specialist – who also couldn’t see me.”
Trying desperately to cling to any sense of normality she could Casey mustered the strength to attend her college enrollment in September but it was too much.
“I really wanted to go back to uni and my friend picked me up and took me. But I was there for 10 minutes and I had too much anxiety and felt awful. I left and came straight home and knocked on my neighbor’s door and begged her to take me to the hospital.”
After more than 30 hours in accident and emergency Casey was told she would undergo an operation on her abdomen.
“They knew it was inflamed and wanted to check what was causing the pain but I never thought I’d wake up with a stoma,” she remembered. “The surgeon said when he looked inside it was horrendous. He took 35cm from my small bowel and five centimeters from the other because they were so inflamed.
“I was extremely nervous going into theater because I’d never had an operation before and I had to sign a complications form in case anything went wrong.
“I was relieved to wake up okay but I was in absolute shock to see the stoma. But I am grateful to it because it has saved my life and I’ve quickly had to adapt to it.
“I had to get on with it for the sake of my children. I stayed in hospital for two weeks but as soon as I felt close to okay I came out.
“I improved mentally straight away because I was able to eat. Half the battle with Crohn’s is the mental toll it takes on you.”
While she felt better in herself she says she struggled at times with the embarrassment of wearing a stoma bag and would often be patronized because of it.
“Many people I felt spoke to me like a child due to it,” she said. “I felt uneasy with it and unsure. For a while I didn’t even show it to my mum. I was grateful to those who treated me normally. But the embarrassment was there because every day things are still a challenge.
“It can be difficult being out and needing the toilet because often with a stoma you need the toilet with no warning. I don’t like using my ‘can’t wait’ card in public but I’ve found people are very understanding.
“You can have leaks from the bag while out and about and I’m always waking up in the night because the bag is full of wind. Sometimes things get embarrassing but you have to get on with it and do your best when you have a stoma.”
But things began to change for Casey when she came across the ‘Stoma Squad’ on Facebook – a small group of women with stomas who share support with each other including tips to tackle the daily challenges of life with a stoma.
“I joined lots of groups on social media about stomas involving people who had the bags for a variety of reasons. In one of the groups I came across a post from a woman in England asking if anyone would be interested in modeling their stomas at an event in Burton.
“It really struck me as a great opportunity to celebrate this change in my life and body positivity too.
“I was so nervous traveling up on the train to Burton on my own but when I got there it just felt so good.”
At the event Casey modeled with her stoma on show with 10 other women for an array of companies and magazines and later featured on national television with the Stoma Squad to raise awareness of living with stomas positively.
She is also soon to model in a national magazine and is heading to London in the near future for more shoots and talks are in the offing for a calendar celebrating powerful women with stomas.
“It’s all about normalizing all appearances and body shapes,” she said. “We have all had different experiences. One of the girls has multiple sclerosis, one has bowel cancer, some of us have Crohn’s.
“When I saw the post I was really interested in helping to do that. I’ve seen comments on our posts from girls saying they’d never thought of doing that and that they wouldn’t have the confidence. But I have to say it’s actually helped my confidence a lot. I’ve honestly never loved my body as much as I do now.
“It’s given me a tribe too which I feel really connected to. When one of us is down someone else is there to pick them back up. I’m the only one in Wales but we are in contact every day. It’s amazing. It’s great to have a space to talk about all things stomas and the challenges they bring but also to celebrate our bodies and our differences.”
She encourages others who have stomas to reach out for help to prevent people feeling isolated.
“It’s about mental health. Having a stoma can be very lonely. It was difficult when I woke up with it because all of a sudden I had this thing attached to me which I relied on but I’d never met anyone who’d got one before.
“I’m learning things every day and we all learn from each other. There are a variety of brands and bags you can wear which I’d never heard of but they’re lovely.
“When I came home from the hospital with the stoma all I wore was leggings and baggy clothes because I thought that was what people with stomas wore. But what I’ve learned from the girls is that actually you can wear whatever you like.”
While the operation hasn’t completely removed her symptoms she is getting closer to a life she deserves.
“A stoma doesn’t cure the condition and life can still be an ongoing struggle at times but I’m a lot better physically and mentally,” she added.
“It’s crazy how quickly life has changed. I felt so depressed and as though the pain was going to kill me.
“I’ve learned never to take for granted little things in life like being able to eat without throwing up. That’s been life-changing.”
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