Mum becomes TikTok star sharing videos of her stoma bag to normalise Crohn’s disease

Watch now: Mum documents battle against Crohn's disease on TikTok

A mum with Crohn's disease has become a TikTok sensation after sharing videos of her stoma bag in a bid to normalise the condition.

It's been mere weeks since recruitment consultant Natalie Parr, 26, had life-changing surgery to have a stoma fitted to collect her waste, after years of suffering with persistent problems because of the inflammatory bowel condition.

Parr says: “The first video I posted now has over 32,000 views and the comments are all so supportive.

“After the hardest and scariest time of my life, being away from my family and particularly my little boy, a whirlwind of crazy up and down emotions and then the healing, I decided pretty quickly that this was something I didn’t want to hide or be ashamed of.

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“I didn’t want to stop feeling like myself, or feeling like I should hide away or have to change my whole wardrobe to accommodate this huge change.”

“I want to show my son that it’s okay to be different and to be proud of who you are no matter what.

“Of course, I’m still coming to terms with my new body. Some days are harder than others and the wish to be ‘normal’ creeps in.

“I intensely miss the body I used to know, but I’m learning slowly to love my new body for all that it means and all that it gives me.”

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Parr, who lives in Wickford, Essex, with her boyfriend, Danny Hollowbread, 29, and their son, Teddy, two, believes she first experienced symptoms of Crohn’s when she was just 13.

“For the next five years, my symptoms got progressively worse," she says.

“It reached the point where I was needing to run to the toilet about 30 times a day, but I put off telling anyone about it.

“At the time, I was an awkward teen and felt embarrassed. I also had a feeling that something was seriously wrong and I was scared of the outcome, so I put my head in the sand.”

After various tests, she was diagnosed with Crohn’s disease, aged 18.

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“It’s an auto immune condition, which means whenever I get a cold or a bug that should last a couple of days, I’ll be ill for two weeks, sometimes to the point where I end up in hospital," she says.

Armed with a diagnosis, Natalie was prescribed medication to combat the pain she was experiencing, but she says getting her drugs right was very much a question of trial and error.

“Some things worked better than others but in 2017, when I was 21, my bowel perforated and Danny had to rush me to hospital," she explains.

“We had only been dating for a few months at the time and, while I had explained my condition to him, it was the first time he saw just how badly it affected me.

“When we got to the hospital a doctor told him that if he hadn’t brought me in that night, I might not have made it to the next day. ”

After spending a few nights in hospital, she recovered at home and was prescribed new medication which seemed to rid her of her ailments.

“The drug completely took away all symptoms and for three years I felt like I didn’t even have Crohn’s Disease, which was amazing," she says.

During that time, in 2020, Parr gave birth to her son, Teddy.

“It was after giving birth that the pain started to return. It would flare up and came back stronger, but this was during the start of the pandemic, so I struggled to get further tests done," she explains.

“It took a while as I had to wait for things in the world to return to normal but, last year, doctors started discussing the possibility of me having a stoma.”

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Natalie admits she was reluctant at first to go ahead with the procedure. But in April she had a major flare up.

She adds: “I was in hospital for weeks while they tried to get me better and being away from my boyfriend and our little boy for that long was awful.

“It was getting worse and worse and there was a moment when one of my doctors said to me, ‘I cannot keep seeing you in hospital, we need to do something about this.’

“The pain meant that I was struggling to do all the things I wanted to do with my baby. I couldn’t always play with him or be as present with him as I was in so much agony.

“I knew something had to drastically change.”

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At the end of May, Parr finally went in for the life changing procedure to have a stoma bag fitted.

“It was a very emotional thing to go through and it was quite scary to have an operation knowing my body would change because of it, but I feel very positive about the outcome," she explains.

“Danny has been amazing and took over the care of Teddy while I went through the operation.”

It is just three weeks since she had the four-hour operation and already she acknowledges that the results have been life changing.

“I’m still recovering and sore from the surgery, but the actual pain I used to experience due to my condition has completely gone,” she says.

“It’s felt like a miracle cure, I can’t believe it just vanished overnight. The pain I would feel on a daily basis was becoming unbearable. I’d eat a mouthful of food and have to rush to the toilet. I just wasn’t coping with the condition anymore.

“I have to have another big operation in the next year or two to remove part of my bowel, but I’m hoping that I’ll be given the green light by my doctor to have another baby before having the second op, as we’re keen to expand our family.”

In the meantime, Parr is eager to project a positive message about stomas, by posting videos showing hers on Facebook and TikTok and helping to raise awareness of Crohn’s.

She is taking part in the Crohn’s and Colitis UK Walk It fundraiser, for more information visit: www.crohnsandcolitis.org.uk

Additional reporting by PA.