TikTok keeps taking down my stoma videos and branding them ‘disturbing’

Holly Fleet credits her stoma bag with saving her life, so it’s no wonder she wants to brag about it.

Yet TikTok continues to remove videos of the 29-year-old, which lay bare the realities of what life is like with a stoma.

Moderators working for the social media giant have called her clips, often of her in her underwear to show her stoma, “disturbing.”

Others have even been branded as ‘sexually graphic’ and ‘violent’.

“It’s like being told ‘you’re violent, you’re disgusting, we don’t want to see what you look like’,” Miss Fleet, from Barnet, north London, told MailOnline.

I’m putting up with a lot of myself and being vulnerable, and then basically being told that’s not okay.

Miss Fleet calls herself stomababein reference to the late Dame Deborah James, who started a blog called Bowelbabe in hopes of dismantling the taboo around bowel-related disease.

Freelance journalist Miss Fleet was diagnosed with ulcerative colitis, a type of inflammatory bowel disease (IBD), in 2020.

He had his colon removed the following year in emergency surgery when his intestine ruptured, potentially life-threatening.

A perforated intestine occurs when inflammation and ulceration, which happens to colitis sufferers, weakens the intestinal wall to the point where a hole develops.

Contents retained within the intestine, including bacteria, can spill into the abdomen, potentially triggering peritonitis.

This can lead to sepsis, which has a mortality rate of around one third.

Surgeons fitted Miss Fleet with a permanent stoma, an opening in the abdomen that can be connected to the digestive or urinary systems.

He saw a large part of his colon removed in the process.

Then, in August of last year, he underwent a second surgery to remove the rest of his colon and his entire rectum because he was still “bleeding profusely,” one of the main symptoms of colitis.

The procedure, a proctocolectomy, is the standard surgical option for colitis patients who are not getting any benefit from medications, according to the Crohns and Colitis Foundation.

And ulcerative colitis increases the risk of getting bowel cancer, according to the NHS, which Miss Fleet said she “didn’t want to take the risk”.

There are over 120,000 people in the UK living with a stoma and up to a million in the US, which inspired Miss Fleet to help raise awareness.

She began posting videos about her daily life with a stoma to ‘give people hope’, combat stigma and encourage those in need of ‘life-saving’ surgery to get it.

Clips include the journalist sharing things like changing her stoma bag, a small waterproof bag used to collect waste from the body.

She started by posting videos to her Instagram and shortly after her surgery she decided to post her first video on TikTok. It went viral in a matter of hours.

A few hours later, he noticed that he had been slapped with a disturbing content warning and then removed.

Miss Fleet, who also hosts a podcast called Chronic Illness and Me, said the videos are removed because people report them.

She said, “I understand that if you haven’t seen something like this before, obviously it might set you back a bit.”

‘Especially if my stoma is really outside, then I get it, why would they report it.

“But then for TikTok to not review it properly and just delete it, it’s very useless.”

Miss Fleet said that TikTok, who has been approached numerous times, has always responded: “We do our best, but we don’t always get it right.”

He also attacks them on Twitter when a video is said to have “violated the guidelines”, calling the platform “extremely capable” in a tweet.

“They never take any responsibility for it and have done nothing to change their policies at all as far as I can see,” he added.

Miss Fleet’s goal with the videos is to help people with a stoma, or those who need one, feel more confident talking about it.

She said: ‘For a long time, people with a stoma have felt really isolated and haven’t felt like they were part of society. TikTok is halting any positive progress by removing the videos.”

He also claims that the negative reactions to his content are “a true reflection of where we are as a society in general” with regard to disability awareness and acceptance and said that the platform is “not for disabled creators”.

And Miss Fleet claims there is a ‘sexist’ element to the removal of her videos, as she posts in her underwear.

She said: ‘People say, ‘Oh, you’re in your underwear.’ Well, how else am I supposed to display a stoma bag? I can’t show a stoma bag in jeans and a blouse.

“Now naturally, unfortunately, you’re going to get a predominantly male audience and your mind is going to work very differently than how female minds work, seeing a woman in her underwear.”

Miss Fleet said that some men “obviously look at it and see it from a sexual point of view” and then report it once they realize it’s not that kind of content.

She also stated that male creators who post similar content “don’t get as many warnings.”

As an influencer, Ms. Fleet has partnered with brands to earn money from their content.

But she said there is an ‘uncomfortable’ expectation that disabled creators will work for free, as some people have claimed she is ‘exploiting her illness’.

And the constant removal of its content is hampering its ability to get brands to work with it.

“If that was in any other job, any other industry, it would be seen as discrimination, but with TikTok, it’s completely fine to have that done to me,” he said.

Before her surgery, Ms Fleet had never met or seen anyone who looked like her with a stoma, but she said finding people who would post about it on Instagram helped her feel less alone.

She added: ‘I thought I was going to end up in seclusion, so when I saw these people it gave me hope.

‘That’s what I needed at the time and that’s why when I got better I wanted to help do that for others. I want to make people feel hopeful.

A TikTok spokesperson told MailOnline: “As we work to keep TikTok an inclusive space for self-expression, we know that sometimes moderating at scale means we occasionally make mistakes, so we make it easier for creators to appeal.”

“We’re proud that people are turning to TikTok to raise awareness about living with an ostomy, with related hashtags receiving millions of views, and we hope Holly continues to share her story on TikTok.”