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‘I would rather have died’: How getting a stoma bag at 29 changed my life – and broke the stigma

Written by on 4 October 2020

Sarah Smith always said she would rather die than have a stoma bag.

After she was diagnosed with ulcerative colitis at 16, she battled painful and “embarrassing” symptoms with heavy medication for more than 10 years.

Her condition, which causes the colon and rectum to become inflamed, meant she would regularly have to leave parties or meet-ups with friends suddenly to make sure she didn’t have an “accident”.

“I had accidents many a time,” she told Sky News.

Image:
The 30-year-old personal trainer wants to reach out to others with her ‘invisible’ illness

“I would go out for a meal and worry I wouldn’t be near a toilet or be able to get home in time.

“I had one on the drive home once and when you’re in a car, there’s nothing you can do about it, you just have to let it happen. It was very traumatic.”

Symptoms such as diarrhoea and “agonising” abdominal pain left her feeling isolated and with no cure, she and her doctors tried to manage them with a range of powerful drugs.

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Sarah, a 30-year-old personal trainer from Leicester, said: “Even when I was diagnosed, I still didn’t really know what it was.

“It was quite scary being diagnosed with something you didn’t know about. You’re just told there’s no cure and you’re going to be on medication for life.

“I had no one to talk to about it. No one can see the pain you’re going through. People would ask ‘are you better? You seem better’ and you’d say ‘well, no’.”

Sarah is pictured in hospital before her ileostomy procedure in April 2019
Image:
Sarah is pictured in hospital before her ileostomy procedure in April 2019

It was only around three years ago that Sarah’s consultant suggested she could have a stoma bag fitted.

A stoma, or ileostomy, is where bodily waste is diverted to an opening in the stomach instead of going through the normal digestive system. The opening is covered with a bag that collects the waste.

But because of the stigma around stoma bags and a lack of education, Sarah thought it would be “the end of the world”.

She said: “I always said I would rather die than have a bag. I would have carried on trying different medication, even though some of the ones I was on were like chemotherapy drugs.

“I thought the bag would smell. I thought my wife wouldn’t find me attractive anymore. I thought I wouldn’t be able to exercise.”

But in April last year, her symptoms worsened and she was admitted to hospital.

Doctors said her colon had become toxic and she had no other choice.

She said: “The consultant said, ‘look it’s your time, if you don’t have this now you’re going to die’.”

After the operation, Sarah was in recovery for three months and unable to lift anything heavy for another three.

But now, she says having a stoma bag was the best decision she has ever made and wants to reduce the stigma around it.

She said: “It isn’t as bad as you think. It’s scary at first, but there is a better life waiting for you. My bag is a part of me, it’s a part of my new life.

“It’s not gross, it’s not going to smell. If I had someone like me to talk to when I was diagnosed, I would have had my surgery years ago.”

In lockdown, Sarah started an Instagram page to show people how a stoma has improved her quality of life.

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Colon vs. No Colon Whenever my consultant mentioned surgery to me I always shut him down and wouldn’t talk about it. I wouldn’t want to know, I could have probably had planned surgery 3 years prior to when I was rushed in for emergency surgery. But I would have rather pumped harsh medications into my body than opt for a stoma bag…it’s so hard to think back to those feelings. The feelings I personally have now for my bag are my feelings & I know so many people have different journeys with a stoma and that’s okay, nobody is the same. But the way I feel now, if my consultant could have told me this 3 years ago I would have done it. But actually it isn’t that simple. It is a complete mental block that you have to get your own head around to have surgery. I am actually glad my surgery ended up being emergency, as it took that difficult decision away from me (as silly as that may sound) I try to think back and ask myself why I didn’t want a stoma bag, and the answers I have are simply because I wasn’t ready, I wasn’t mentally ready for my body to change so much & to enter the unknown, even though the known was so awful. I want to change societies views on stomas. (along with so many other amazing people out there @thebaglifeofbeck @ambersostomy @billieandersonx @natalie_amber1 just to name a few who inspire me) I think I was scared of what other people would think of me, over my own personal health, and I would hate to think others felt that too! If you are feeling alone & unsure on what to do, reach out, there are so many people even if you don’t necessarily know them who will help and guide you – but ultimately the journey is yours and I want everyone to know, no matter what they are going through, you will never be alone!? #everybodyisbeatiful #bodypositivity #bodytransformation #disabledmodel #ibdstyle #ibdawareness #crohnsandcolitisuk #selflove #normalisenormalbodies #normalisebodies #youdoyou #youbeyou @ibdsuperheroes

She reached out to different brands and is now part of a lingerie campaign with George at Asda.

She said: “If you never see anyone with a stoma you’ll think you have to hide them away.

“There’s no point just having me in a dress, so I show all of me. Now I can enjoy holidays without being in pain – it’s empowering and I want to empower other people.

“Now I have a bag, I don’t know why I was so against it. My new life is so much better.”

Sarah is an ambassador for the charity Colostomy UK and its #StomaAware campaign.