Planning a day around proximity to toilets would be a frankly absurd idea to the vast majority of us, but for Nicky Cummins, that is the uncomfortable reality.
The 50-year-old mother of three is one of over 1,000 island residents living with an inflammatory bowel disease, a debilitating condition which makes bathroom emergencies a fact of life.
Having developed the issue following the surgical removal of a rare tumour in 2005, where doctors extracted part of her bowel, Cummins suffered for years before speaking out.
“You’re scared to go out, scared to eat, just in case it sets you off,” she explained.
“It affects you mentally as well, not just physically. Especially if you have an accident in public, then you get all embarrassed and upset.
“The amount of times I’ve burst into tears after leaking; I’ve called my mum crying and she’s asked me ‘what’s wrong?’, and I’ve had to say it’s because I’ve had an accident.”
An Invisible Battle
As well as the implications the disease has on the sufferers quality of life, the invisible nature of the disease can lead to uncomfortable conversations when nature calls.
“Because bowel issues aren’t visible, if I need to use a disabled toilet, you get: ‘what are you going in there for? You aren’t disabled’,” Nicky explained.
“Just because you can’t see it, doesn’t mean to say I’m not (disabled).”
The Bladder and Bowel Community organisation issues ‘just can’t wait’ cards, which can be shown in coffee shops and restaurants, to explain that the holder may need urgent access to a bathroom.
The free card can be added to the users digital wallet, or carried physically, and may help avoid an awkward encounter at the till.
“If I go into a coffee shop, they sometimes say you have to buy something to use the toilet. I don’t want to buy something, but I need to use the toilet,” she exclaims.
“Businesses on the Isle of Man need to be made aware of this.”
Infrastructure Failings
When asked what must be done to help those suffering, Nicky’s response is emphatic.
“There’s just not enough public toilet facilities. If you’re in the middle of Strand Street, it’s either Marks & Spencers, or Chester Street Carpark. You can’t guarantee that a business is going to let you use theirs.
“And if you’re walking down the prom, you better hope you have a 20p because that’s the charge for those toilets. They don’t take card, either.”
While the Manxwoman was full of praise for the gastroenterology team at Nobles Hospital, she was quick to raise concerns over lengthening waiting times and the perception that she wasn’t being listened to.
“I did feel heard eventually, but it took a lot to get heard,” she recalled.
“I ended up putting in a massive complaint about a doctor who is no longer there, because he just wasn’t listening to me. I was struggling so badly, to the point where I’d eat something and immediately look nine months pregnant. They have to sit and listen to peoples worries.
She went on to add: “The biggest problem with Manx Care is the waiting times. Not so long ago I was in A&E for six and a half hours with a bowel blockage. I have another appointment with the surgical team which was set for December, and I had to battle to get that brought forward by six weeks. It’s ridiculous.”
A Lifeline
Despite her long-standing battle with the disease, Nicky’s life was transformed in 2023 when she was given a stoma to help combat her symptoms.
A stoma allows the recipient to wear a colostomy bag, preventing incidents and allowing waste to be removed from the body directly.
In the wake of Stoma Awareness Day earlier this month (October 3), she couldn’t be more thrilled with the results.
“Since I’ve had the stoma, it (life) has become a lot easier. I feel like, yeah, I can do it.
“I can dispose of it hygienically, and don’t have to worry about it.”
Having now had the stoma for two and a half years, Nicky says that ” having bowel disease doesn’t stop you living a normal and happy life.”
Time to Talk
Nicky’s commitment to drawing attention to the plight of those dealing with Inflammatory Bowel Disease has gone a long way to dismantling the stigma long-associated with the condition, something which she believes is vital in tackling the issue.
“There is a big stigma around bowel issues. People are afraid to speak up and ask for help, but you shouldn’t have to suffer in silence,” she said.
“There needs to be more help and more awareness available out there. There’s 1,000+ people suffering with bowel issues, as well as the ones who haven’t got diagnosed.
“By sharing my story, if I help one person speak out then I’ve done what I set out to do,” she smiled.
If you or someone you know is suffering with bowel issues and/or has a stoma, you can find support through Nicky’s dedicated Facebook group here.
For general gastroenterology enquires, call Nobles Hospital on +44 1624 650146.