‘You never forget the humiliation’: Louth Crohn’s advocate calls for greater toilet access
“You never forget the humiliation,” says Amy Dennis as she recalls pleading with a bus driver to stop for her to use a toilet.
“I told him I had Crohn’s and it was an emergency, but I got the same response I’ve had before, they look at me and say ‘You’re young, hold it in.’
Now a patient advocate with Crohn’s and Colitis Ireland, the Dundalk woman says a lack of public awareness — and access to toilets — remains one of the biggest challenges facing people living with inflammatory bowel diseases.
"I was only sixteen when I first developed symptoms, and I didn’t know what was making me so unwell. I was really sick and lost half my body weight in the space of about six months.”
She recalls that it wasn’t digestive issues at first but a worrying rash on her foot which first sparked concern.
“I was actually admitted to the Lourdes Hospital in 2020 because of the rash, they thought it might have been meningitis related, but I later learned that it was an inflammatory condition of the skin linked to Crohn’s.”
It took years before Amy finally discovered what was making her so ill.
"I couldn’t eat, was getting sick all the time and had chronic diarrhoea which meant I needed to use the toilet a lot”
By the end of 2022, when she was in the middle of a teaching placement, and feeling at her worst, a diagnosis finally came.
"I wouldn’t go as far as to say it was a relief, I wasn’t expecting it, but it certainly made sense. At least then I was able to start treatment, which has helped me go into remission.”
Amy’s experience is shared by thousands of people across Ireland living with life-altering bowel and digestive conditions. She joined Crohn’s and Colitis Ireland, she says, to “put what happened to me to positive use”.
“Having access to a toilet is absolutely vital,” she says. “I’m really appealing to local businesses to be more aware and to open up their facilities to people with Crohn’s and other digestive or bladder conditions.”
She describes how living with an invisible illness affects daily life.
“Needing to use the toilet affects everyone — from mums with toddlers to elderly people. I’m in my 20s and I’ve faced a real lack of understanding. I might not look like I have a chronic illness, but when it flares up I have to plan every single place I go around where I can use a toilet.”
She says the lack of access can be “extremely isolating” and believes it could be addressed if more shops, cafés and other businesses allowed people in urgent need to use their facilities.
That advocacy led Amy to become involved in the national ‘No Wait’ card campaign, which aims to improve awareness among businesses and public bodies and provide cardholders with urgent access to toilets.
“Becoming a patient advocate is probably the best thing I’ve ever done,” she says. “Even though I have my own battles, I understand this illness and can help others.”
Pushing for the ‘No Wait’ card to be implemented in Louth, she reached out to councillors and was delighted when Cllr. Sionainn McCann tabled a motion on the issue at last month’s meeting of Louth County Council.
Amy attended the meeting and says it was “inspiring” to hear the difficulties of people with Crohn’s and other conditions being discussed in the council chamber.
The motion called for the council’s support for “equal access to toilet facilities for people with chronic and invisible illness” and for recognition of the need for ‘No Wait’ cards to be placed on a statutory footing for people who require urgent access to toilet facilities.
It also called on the council to develop a voluntary ‘No Wait’ initiative inviting local businesses to participate by allowing urgent toilet access to people who hold a valid card.
The motion received widespread support in the chamber as it also called for awareness raising initiatives including window stickers for Louth businesses to promote the campaign.
In response, Director of Service Joanna Kelly said the council recognised the difficulties faced by people accessing toilet facilities. In the absence of a statutory scheme, she said the council would write to local Chambers of Commerce to encourage a voluntary initiative and invite health and disability organisations to assist with awareness.
She added the council would “undertake to ensure, where reasonable and practical, the availability of toilets as part of any future development proposals”.
With World Inflammatory Bowel Disease (IBD) Day taking place on May 19th to raise awareness for Crohn's disease and ulcerative colitis, Amy says she hopes the steps taken by Louth County Council will lead to “greater understanding” of Crohn’s and similar conditions.
"I’m really grateful to Cllr. McCann for bringing this forward and all the councillors for their support. I hope that the council will look at providing more public toilet facilities, as there are so few, just one in Dundalk that I can name.”