A mum-of-three from Beverley has spoken about the “degrading” and “embarrassing” situations she has found herself in because of a hidden disability. Jenna Robinson, 37, has what is known as a loop ileostomy – a stoma bag is worn over an opening in her abdomen to collect faecal waste – following years of physical and mental health challenges brought on by the condition, slow transit constipation.
The condition, which Jenna believes started after the birth of her daughter by C-section eight years ago, began to affect every aspect of her life. In a blog raising awareness for Colostomy UK, Jenna said: “I had to plan journeys around toilets.
“I was in constant pain and bloated all the time. Once, we went to the seaside with my children but had to turn straight back because the pain was unbearable.” Over time, the physical symptoms took a toll on Jenna’s mental health.
“I would have panic attacks before going to the toilet because I knew how painful it would be. I’d bleed heavily and pass blood clots. It felt like trying to put a triangle through a circle – it just doesn’t work.”
Jenna, who is mum to two daughters and a baby son, took the life-changing decision to have surgery and “it was like somebody waved a magic wand”. However, Jenna now faces challenges of a different kind.
She gets “tutted and huffed at” and has people regularly challenging her for using a disabled toilet in places such as cafés and supermarkets. “I’d gone into one place – a café of a big chain – and asked for the disabled toilet key.
“I got the reply, ‘why do you need it?’ When you’ve had to answer that so many times, I pulled my trousers down and showed them.
“It was right at the beginning of my recovery from surgery as well. It’s awful, it’s so degrading and embarrassing.
“You get people looking round saying, ‘she just wants to jump the queue’ or saying to you ‘you don’t look disabled.” Jenna carries a disability ID card, an access card and a RADAR key (that unlocks disabled toilets at thousands of locations across the UK) but gets fed up of having to explain herself.
“It’s mainly the older generation [who challenge her] to be honest. I saw about a little girl who was in a shopping centre and needed to use a disabled toilet and there was a man in a wheelchair who told her ‘you can’t go in there, this is what a disability looks like’.
“What is it with people who think it’s a competition as to who is more disabled than others? Why attack an eight-year-old girl, making her cry, when she is obviously covered in poo, is really upset and just wants to get on with her day and go shopping with her friends?”
Jenna said it would be so helpful to people like herself to see more places putting stickers on their toilet doors alerting users to the fact that not all disabilities are visible. She also said a “little shelf” in a cubicle would be a thoughtful and easy addition.
“I have to stand to empty my stoma bag and there can be a lot of splashback. It’s really hard to manoeuvre; I’ve had to put my stoma supplies on a toilet seat before now because there is nowhere else to put them.”
Jenna also lives with the condition FND, which can affect her walking and balance – she spoke to the Hull Daily Mail in 2019 about it – and has a blue badge for parking, another area of her daily life where she can find herself being challenged. “I’ve had someone say to me, ‘what are you doing in there [a disabled bay], I’ve just seen you walk’.
“You go to move your car and they are saying, ‘that’s not your blue badge’ and they are telling me to show them. Only a traffic warden or the police can look at my badge; I’m lost for words.
“It’s trying to get more awareness and understanding out there – over 200,000 people are living with a stoma in the UK. It’s not complicated to put up a hook on the back of a door, a mirror and a shelf – and stickers on the doors, they’d make a massive difference.”
Later this year, Jenna and her family are going on holiday abroad together for the first time in about nine years, something she is “so excited” about being able to do but it also raises another concern about potential obstacles at the airport. Jenna has discovered that people with stoma bags can “get separated” from their travelling group to be searched.
“I’ve heard horror stories from airports, of people being separated from their families and taken to a private room – some have had to actually take off their stoma bags. Evidently a lot of drug trafficking goes on in stoma bags.
“It’s another thing I’ve got to look forward to!” Jenna, who documents navigating life with an ileostomy on her Instagram page, said: “I feel that if I got the right treatment a long time ago, I might not have a stoma now.
“It was left for such a long time. But I am so grateful for my little bag – my children call it my bag for life – and the heylo sensor I have on my bag that tells me if I am leaking. It has taken away so much anxiety, worry and stress.”