BBC journalist George Alagiah has opened up about adapting to life with a temporary stoma – and the shame and guilt he felt for using the disabled toilets after his bowel cancer diagnosis.
The newsreader was first diagnosed and treated in 2014, however in 2017 the cancer returned and spread – he is now living with stage four bowel cancer.
In a new Bowel Cancer UK podcast ‘In conversation with George Alagiah’, the newsreader interviewed Andrea Robson, 39 from London, who has stage two bowel cancer and a stoma, along with her stoma nurse Lisa Allison.
During their chat, Alagiah admitted he found using a disabled toilet challenging when he had a stoma fitted. “I had a stoma, but I didn’t look disabled,” he explained, “and I would be turning the key at a disabled loo at the motorway service station and if there was a queue and somebody obviously disabled, I used to feel guilty and like I needed to apologise and explain.”
Robson agreed. “I’ve had a few dirty looks when I’ve gone in or nipped out of one,” she said.
His comments come in the same week that a survey revealed half of people living with Crohn’s disease and colitis – the two main forms of inflammatory bowel disease (IBD) – have been shamed for using a disabled toilet. Of these, 61% have faced verbal and sometimes physical abuse.
It’s clear toilet stigma is real for a lot of people with invisible illnesses. A UK-wide campaign called ‘Not Every Disability is Visible’ is aiming to change that by placing signs on accessible toilet doors to help people with invisible conditions feel more confident using them.
In his new podcast, which aired today, both Alagiah and Robson spoke about how they adapted to life with a stoma – a bag which attaches to an opening in the abdomen and diverts all digestive waste out of the body – and how they felt when they were told they would need one.
Clinical nurse Allison explained why people might need a stoma after a bowel cancer diagnosis. “It’s all dependent on what piece of the bowel needs to be removed because of the cancer,” she explained.
“When there is a tumour in the large bowel, the tumour has to be removed and some surrounding clear bowel tissue needs to be removed and a new join made.
“In order to protect that join, a stoma away from the join will be brought out onto the surface of the tummy. So commonly it’s used as a sort of safety mechanism so that the poo comes out of the stoma bag rather than carrying on through the bowel to where this new join is.”
[Read More: 9 Things People With Stomas Want You To Know]
Alagiah had an ileostomy bag fitted and was quite candid about the contents of it. “In my case... it wasn’t really poo in the sense that we think about it, it was quite a lot of liquid,” he said. “Basically it’s very difficult to manage, you’ve got liquid coming out of your body, it’s going into a bag, you’ve got to seal it. It isn’t easy, is it?”
Bowel cancer is the UK’s fourth most common cancer and second biggest cancer killer with more than 16,000 people dying from the disease every year. However bowel cancer is treatable and curable especially if diagnosed early.
The podcast forms part of Bowel Cancer UK’s #thisisbowelcancer campaign, which aims to shine a light on the varied and many people affected by the disease. You can listen to it here.