Life with a stoma: 'It's not a bag for life, it's a bag for living'

Stephen says his life changed when he became unwell in the summer of 2022

"I was terrified of getting it."

That was 24-year-old Stephen Blakely's reaction to getting a stoma bag,

He has now started to document his experience of living with a stoma on social media in a bid to bust myths and tackle stigma.

Stephen, from Londonderry, became unwell in the summer of 2022, bleeding when going to the toilet and suffering severe pain. That year he underwent an ileostomy and now uses a stoma bag to collect waste products.

He hopes his TikTok videos will help those with similar symptoms overcome any fear of getting help.

"For me, whenever I got a stoma bag you always hear the myths and the rumours - there are plenty of them," he told BBC Radio Foyle's North West Today programme.

"People thinking you are going to smell. That's a terrifying thing to go through.

"That was my most terrifying fear. I lay awake about that for days at a time, that I would go outside and people would think: 'There's an odour or smell coming off him.'

"That's never happened me once with a stoma bag - it's very important that I get that across".

'A bag for living'

Stephen has ulcerative colitis, a condition where the colon and rectum become inflamed.

"I was going to the toilet 10 to 12 times a day at that time. I was in excruciating pain constantly," he said.

The ileostomy means he now lives with a stoma - an opening on the abdomen which connects to the digestive or urinary system and allows waste to be diverted out of the body and into a bag.

"It doesn't have to be a bag for life - it can be a bag for living," he said.

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'I didn't know anyone else with a bag'

Stephen, who was active and healthy before he became sick, said he began to feel isolated after the surgery.

When he left hospital he was visited regularly by specialist nurses but those visits became less frequent.

"You are left dealing with it, struggling on your own. You have no-one else that can understand what you are going through - I didn't know anyone with a bag when I got it," he said.

He said he went into "a hole" for two years while he tried to come to terms with how life had changed.

Things are better now. He still struggles at times, but he's socialising again, going out more often.

He hopes his social media content will help others come to terms with life with a stoma and encourage anyone who is unwell to get help.

"Since I made the TikTok account I have had people reaching out and contacting me. There's more people than you would know with a stoma bag," Stephen said.

"If you are going through pain or bleeding, go and get checked out. It literally takes five minutes and could save your life.

"There's nothing a doctor or nurse hasn't seen before. Yours isn't the first backside they have seen."