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In September 2018 I was diagnosed with rectal cancer. I’d visited my GP in the previous summer, and thanks to his prompt action, I was given a colonoscopy within weeks and had my first surgery in November 2018.
I had a lower anterior resection and ended up with an Ileostomy.
I then had eight rounds of chemotherapy, and remained well, so in February 2020 I had my ileostomy reversed.
The cancer then spread to my liver, so I had more chemotherapy and then a liver resection in February 2021. I had a posterior pelvic exenteration and Hyperthermic intraperitoneal chemotherapy in September 2021, and due to issues with my bowels after my reversal, I asked for another stoma, and an end colostomy was created during this surgery.
My stoma has been a real-life saver, but it does come with its issues, and using the toilet when I’m out and about is the main one for me. I could probably count on one hand the times that I have had an uneventful trip to a public toilet in the three years that I’ve had a stoma.
A few specific incidents stand out. A few years back at a football match, my husband and I had tickets which included drinks and a three-course meal. We were in a specific part of the stadium which had two toilet cubicles, and a room full of about 150 people. I asked for the directions to the accessible toilet, and I was told there wasn’t one, and they had a disabled toilet at the other end of the stadium. Long story short, I wasn’t quick enough getting there, and had a blowout and needed to go home.
I attended a wedding recently, and in the venue, they had a slightly larger cubicle for wheelchair users. It didn’t have a sink inside, or anywhere to prepare things for a bag change/empty. They did have a disabled toilet at the restaurant (at a separate building a few minutes’ walk away) which I was glad of, but there was a wheelchair user in the restaurant whose family member challenged me when I exited the toilet.
I also need appropriate bins to dispose of my products – it’s not good to flush away wipes etc and would be impossible to flush a bag! I need soap, and hot water, and paper towels. These are frequently lacking too, and a shelf, why would anyone want to have to lay down their stoma supplies on the floor?
And most importantly to me, I want to campaign for Stoma Friendly toilet signage, to highlight to members of the public that I’m entitled to use an accessible toilet, and it’s not just for wheelchair users.
I really feel, especially in Scotland, that we need a massive boost in raising awareness of stomas. If it’s 1 in 335 of us with a stoma of some kind, then this is huge. I’m in no doubt that I can’t be the only one feeling this way.