Holly Fleet credits her stoma bag for saving her life, so it’s no wonder she wants to flaunt it.
Yet the 29-year-old’s videos, laying bare the realities of what life is like with a stoma, keep being removed by TikTok.
Moderators working for the social media giant have flagged her clips, often of her in underwear to show the stoma, as being ‘disturbing’.
Others have even been branded ‘sexually graphic’ and ‘violent’.
‘It’s like being told “you’re violent, you’re gross, we don’t want to see what you look like”,’ Miss Fleet, from Barnet, North London, told MailOnline.
Holly Fleet (pictured), a showbiz journalist, was diagnosed with ulcerative colitis – a type of inflammatory bowel disease (IBD) – in 2020 and had her colon and rectum removed the following year
The 29-year-old started posting videos about her day-to-day life with a stoma to ‘give people hope’, combat stigma and encourage those who need the life-saving surgery to get it
However after posting a video to TikTok, which went viral in a matter of hours, she noticed it had been slapped with a disturbing content warning and later removed
‘I’m bearing so much of myself and being vulnerable, to then just be told basically that that’s not okay.’
Miss Fleet calls herself Stomababe, in reference to the late Dame Deborah James, who started a blog called Bowelbabe in the hope of dismantling the taboo around bowel-related illnesses.
Freelance journalist Miss Fleet was diagnosed with ulcerative colitis — a type of inflammatory bowel disease (IBD) — in 2020.
She had her colon removed the following year in an emergency surgery when her bowel split open, which can be life-threatening.
A perforated bowel occurs when inflammation and ulceration — which happens to colitis sufferers — weaken the intestinal wall to the point where a hole develops.
Contents held within the intestine, including bacteria, can spill into the abdomen, potentially triggering peritonitis.
This can then lead to sepsis, which has a death rate of around a third.
Surgeons gave Miss Fleet a permanent stoma — an opening on the abdomen which can be connected to either the digestive or urinary system.
It saw a large part of her colon removed in the process.
Then in August last year she underwent a second surgery to remove the rest of her colon and her entire rectum because she was still ‘bleeding profusely’, one of the main symptoms of colitis.
The procedure — a proctocolectomy — is the standard surgical option for colitis patients who don’t get any benefit from medication, 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 risk’.
There are more than 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 started posting videos about her day-to-day life with a stoma to ‘give people hope’, combat stigma and encourage those who need the ‘life-saving’ surgery to get it.
Clips include the journalist sharing things such as changing her stoma bag – a small, waterproof pouch used to collect waste from the body.
She began by posting videos on her Instagram and shortly after her surgery decided to post her first video to TikTok. It went viral in a matter of hours.
A few hours later, she noticed it had been slapped with a disturbing content warning and later removed.
Miss Fleet, who also hosts a podcast called Chronic Illness and Me, said the videos are taken down because people report them.
She said: ‘I understand if you’ve not seen anything like that before, it could obviously take you back a bit.
‘Especially if my stoma is actually out, so I get it, why they might report it.
‘But then for TikTok to not review it properly and just remove it, is so unhelpful.’
Miss Fleet said TikTok, who she approached numerous times, has always responded with: ‘We try our best, but we don’t always get it right’.
She also hits out at them on Twitter when a video is said to have ‘violated guidelines’, calling the platform ‘extremely ableist’ in a tweet.
‘They never take any responsibility for it and they haven’t done anything to change their policies at all as far as I can see,’ she added.
The journalist shares videos about things such as changing her stoma bag – a small, waterproof pouch used to collect waste from the body
Miss Fleet, also known as Stoma Babe, said the videos are taken down because people report them
Miss Fleet, of Barnet in London, has approached TikTok about the issue on numerous occasions and claims the response is always ‘we try our best, but we don’t always get it right’
Miss Fleet’s aim with the videos is to help people with a stoma, or those who need one, feel more confident in talking about it.
She said: ‘For so long, people with a stoma have felt really isolated, and not felt like they’ve been a part of society. TikTok is stopping any positive progress by removing the videos.’
She also claims the negative reactions to her content are ‘a real reflection of where we are as a society in general’ regarding disability awareness and acceptance and said 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 are like, “Oh, you’re in your underwear”. Well, how else am I meant to show a stoma bag? I can’t show a stoma bag in jeans and a top.
‘Now naturally, unfortunately, it will predominantly get male viewership and their mind will work very differently to how female minds work, seeing a woman in underwear.’
Miss Fleet said some men are ‘obviously looking at it and seeing it from a sexual point of view’ and then reporting it once they realise it is not that type of content.
She also claimed that male creators posting similar content ‘aren’t targeted by warnings nearly as much.’
As an influencer, Ms Fleet has partnered with brands to make money from her content.
And Miss Fleet claims there is a ‘sexist’ element to the removal of her videos, as she posts in her underwear
Miss Fleet said some men are ‘obviously looking at it and seeing it from a sexual point of view’ and then reporting it once they realise it is not that type of content
As an influencer, Ms Fleet has partnered with certain brans to try and monetise her content
But she said there is an ‘uncomfortable’ expectation that disabled creators work for free, as some people have claimed she is ‘exploiting her illness’.
And the constant removal of her content is hampering her ability to get brands to work with her.
‘If that was in any other job, any other industry, it would be seen as discrimination, but with TikTok, it’s completely okay for them to do that to me,’ she said.
Prior to her surgery, Ms Fleet had never met or seen anyone who looked like her with a stoma but claimed finding people posting about it on Instagram helped her feel less alone.
She added: ‘I thought I was going to end up a recluse, so when I saw these people it gave me hope.
‘That’s what I needed at that 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 at times moderating at scale means we occasionally make mistakes, which is why we make it easy for creators to appeal.
‘We’re proud that people turn to TikTok to raise awareness about living with an ostomy, with related hashtags receiving millions of views, and we hope that Holly continues to share her story on TikTok.’
What is inflammatory bowel disease?
Inflammatory bowel disease (IBD) is a medical term that describes a group of conditions in which the intestines become inflamed (red and swollen).
Two major types of IBD are Crohn’s disease and ulcerative colitis.
Ulcerative colitis affects the large intestine (colon) whereas Crohn’s disease can occur in any part of the intestines.
Symptoms may include:
- Abdominal cramps and pain frequent
- Watery diarrhoea (may be bloody)
- Severe urgency to have a bowel movement
- Fever during active stages of disease
- Loss of appetite and weight loss
- Tiredness and fatigue anaemia (due to blood loss)
People of any age can get IBD, but it’s usually diagnosed between the ages of 15 and 40.
The conditions are chronic and cannot be cured so treatment usually relies on medication and lifestyle changes to manage the symptoms, but may include surgery.
IBD is thought to affect some three million people in the US, over 300,000 Britons, and 85,000 Australians.
Source: Crohn’s & Colitis Australia