Living with a stoma - Extra Baggage

A stoma operation changes everything.

Getting a stoma bag has an impact on a person's body image, mental health, relationships, toilet access and more. These young people are adapting to their situation and achieving incredible things, whilst also fighting to raise awareness of their condition.

Laura Hinshaw

^{Tattoo artist}

28-year-old Laura Hinshaw runs her own tattoo shop in the small town of Morpeth, just over 15 miles from Newcastle. She is well established in the tattooing world, has her own merchandise, her own brand of beer and is an artist too.

Think that's impressive?

Well, Laura has a stoma bag and it's changed her life.

Laura's story

Laura was just 16-years-old when she was diagnosed with ulcerative colitis, a debilitating condition which causes inflammation of the large bowel. Whilst some people have no symptoms, others can experience cramping pains, tiredness and fatigue and generally feel unwell.

"I thought I'd be well into my 40s before I'd have to get a bag."
Laura Hinshaw

Although her condition was under control for a long time, Laura was then put on starter medication to ease her symptoms. However, things started to change at 23-years-old when her symptoms started to worsen.

Stronger medication and steroids were prescribed to manage her condition and Laura was frequently in and out of hospital. This was considerably disrupting her work and social life.

In April 2019, Laura had an ileostomy (stoma surgery) after trying the last form of medication (injections into her stomach) which unfortunately worsened her condition.

This operation involved her small intestine being diverted through an opening on her stomach, known as a stoma. The stoma bag is placed over the opening to collect human waste.

Laura said: "I was under control for a long time.

"I didn't even know I could have surgery or that it was a thing.

"I thought I'd be well into my 40s before I'd have to get a stoma bag, but that's where I am now," she added.

Laura after her stoma operation in April 2019. Picture: @lauhinshawtattoo

Doing what she loves: Laura working as a tattoo artist.

Laura is able to work and socialise thanks to her stoma bag.

Her own merchandise: there's no limit to Laura's creativity.

Hard at work as a tattoo artist.

Her own brand of brew: Laura sells beer in cans showcasing her artwork.

Laura's mental health

Whilst Laura's surgery went well, it was her mental health that suffered.

Watch: Laura had a tough few years leading up to her surgery.

Before seeking mental health support, which she had to self fund, Laura was unable to do simple tasks like going out for a meal without having an anxiety attack.

Laura explained: "My therapist says the stoma surgery was the catalyst.

"It all just got too much for me."

She wants mental health support offered to all patients after their surgery and says official information should be readily available through the NHS for ostomy patients. Due to the lack of information available, Laura had to find out about the operation and life with a stoma bag through Instagram and YouTube.

Laura has a large client base in her work as a tattoo artist. She tells every client about her stoma bag so she can help raise awareness. A lack of understanding from the general public means that sometimes ostomy patients can feel misunderstood because their condition is hidden.

Laura said: "I talk about it quite openly.

"I like to educate them on what it is, because a lot of people don't know what it is."

Laura's stoma surgery means she's not constantly poorly and is able to socialise, go to work and live like everyone else; the only difference being the addition of her stoma bag. Laura is now able to live life to the full and she wants others to know that having a stoma bag isn't the end of your life.

Watch: Laura says she has a better life now after surgery.

What is a stoma?

A stoma is an opening on the surface of the stomach which has been surgically created to divert the flow of faeces or urine.

People who have a stoma bag are known ostomy patients or ostomates.

Procedures can be temporary or permanent. In some cases, ostomy patients may have their surgery reversed if their illness is resolved. This can only happen if the patient is healthy enough and if there is a large enough section of healthy bowel left to be rejoined.

NHS Ostomy Care say: "Many ostomy patients find their quality of live improves after surgery."

Why do some people need a stoma?

A wide range of illnesses can lead to stoma surgery such as cancer, Crohn's disease and ulcerative colitis. People of all ages can have this surgery, although it is more common in the elderly. Colostomy UK estimate that 1 in 500 people in the UK are currently living with a stoma.

What is a stoma bag?

A special bag is placed over the stoma opening to collect human waste.

This bag may, in exceptional circumstances, be changed up to 15 times a day. A special kit is needed for this which is carried everywhere and includes a stoma ring to protect the surrounding skin and stoma bags, as well as wipes, scissors, medical sprays and a waste bag.

Watch: How to change a stoma bag.

What support is available?

The NHS provides information on stoma operations and aftercare, however ostomy patients say this is limited. Charities such as Crohn's and Colitis UK and Colostomy UK provide help and support via their websites and phone lines. Ostomy patients can talk to volunteers if they are struggling with their medical condition, if they are having problems with their bag or if their bag leaks, as well as seeking mental health support.

Having a stoma bag is considered to be a hidden disability.

Stoma bags have to be changed in sterile conditions. For this reason, ostomy patients can use disabled toilets. They carry a RADAR key to give them access to more than 9,000 locked toilets in the UK. Some venues across the UK now have 'stoma friendly toilets' which have additional mirrors, a shelf and hooks for clothing to make changing a bag much easier. Ostomy patients are also able to have priority badges when travelling on public transport.

Ostomy patient, Billie Anderson, wearing her badge on the tube platform. Picture: @billieandersonx, Instagram.

Ostomy patient, Billie Anderson, wearing her badge on the tube platform. Picture: @billieandersonx, Instagram.

Laura after her stoma operation in April 2019. Picture: @lauhinshawtattoo

Laura during her stoma operation

Laura in February 2020, nearly a year after her operation.

Joshua Matthews

In the gym - a bag with no boundaries

Joshua is a 26-year-old from Manchester with a big story.
He spends most of his time lifting weights whilst lifting the stigma surrounding young people with a stoma bag.

He doesn't let anything get in his way.

Joshua's story

As a teen, Joshua loved playing sport and was healthy.

That all changed at 17-years-old when Joshua started to become unwell. He started passing blood in his stool, resulting in a plethora of medical checks and medication which didn't work. At 18-years-old, he was diagnosed with ulcerative colitis. At 19, Joshua was given a blood transfusion and was on a drip every 8 weeks, which his body then rejected. Joshua was extremely poorly.

Watch: At his worst point, Joshua thought he was dying.

"It's a huge part of me. My bag saved my life."
Joshua Matthews

When Joshua was 20, his large intestine burst and he needed an emergency operation to fit his ileostomy bag. Three years later, Joshua had a 9½ hour operation to remove his rectum.

Joshua said: "It's a huge part of me, my bag saved my life.

"It's never been a hindrance to me."

Adapting to exercise

Training in the gym is a big part of Joshua's life. Initially Joshua thought training was going to be a challenge but, with the help and support from his local gym and a personal trainer, he says he's fitter and stronger than ever. Joshua has had to adapt some of his exercises and wear different clothing and support to make exercise more comfortable.

The NHS stress that: "Those recovering from a stoma operation must not exercise until a medical professional tells them they can do so."

Watch: Joshua has had to adapt his fitness journey.

Joshua is proud to have a stoma bag. He tells everyone about it because he knows this will help to raise awareness and educate not just those around him, but the wider public too. Joshua thinks more awareness is needed.

Watch: Joshua wears his bag with pride.

Joshua before his 9½ hour operation. Picture: @jj_matthews_, Instagram.

Joshua after his second operation, June 2016. Picture: @jj_matthews_, Instagram.

Joshua and his stoma bag at the gym.

Billie Anderson

Instagram influencer and blogger

With over 6,000 followers on Instagram and a blog with every detail of Billie's journey, this inspirational 23-year-old from Hertfordshire is helping others with conditions like hers, whilst breaking the taboo on poo in the process.

Billie's story

In July 2016, Billie started to notice abnormal bleeding when she was going to the toilet. She then started to experience stomach pains which frightened her but she tried to ignore them and hoped they would go away: they didn't.

Billie after her stoma operation in January 2018. Picture: @billieandersonx, Instagram.

Billie after her stoma operation in January 2018. Picture: @billieandersonx, Instagram.

A month later Billie went to see her GP. Without carrying out any tests the doctor said: "I think you have bowel cancer." She was 19, on her own, and was referred to a cancer unit. Billie didn't have bowel cancer, but the tests still didn't indicate what was causing Billie to bleed abnormally.

"I had to write most of my university essays from a hospital bed."
Billie Anderson

After returning to Portsmouth for her second year of university, Billie was having the time of her life including partying, meeting people and getting to know her new flatmates. Two months later, Billie was bed-bound. She went from weighing 8 stone to almost 5 in the space of three weeks. Billie was experiencing an ulcerative colitis flare up, but she didn't know it yet. Billie could barely stand up and was living between her bed and bathroom.

Watch: Dragged by the ear to A&E, Billie didn't realise how unwell she was.

By January 2017 and having been diagnosed with ulcerative colitis, Billie was spending around 4 days a week in hospital for medication reviews, appointments and tests, whilst still completing her history degree.

Billie explained: "I had to write most of my essays from my hospital bed or from home.

"My Mum had to send a photo to the university of me attached to a drip so the university would believe me," she added.

In December 2017, Billie was in her final year of university.

Watch: Billie's surgeon said she wouldn't survive to the end of her university degree if she didn't have surgery.

Billie had to pause her degree and return home. She was referred to a different specialist and surgeon.

In January 2018, Billie had her stoma operation.

Watch: Billie's heart rate was 152 beats per minute before having surgery.

After her surgery, Billie was out of hospital in 6 days. She was able to walk unaided for the first time in 3 months. Her surgery was successful and that was just the beginning.

Billie documents every element of life with a bag on social media, including body positivity. Picture: @billieandersonx, Instagram.

Billie before her stoma operation. Picture: @billieandersonx, Instagram.

Billie weighing just 5 stone before her operation. Picture: @billieandersonx, Instagram.

Billie and her Mum at Billie's graduation in July 2019. Picture: @billieandersonx, Instagram.

Billie on a photoshoot. Picture: @billieandersonx, Instagram.

Breaking the taboo on poo

Billie was able to return to university and graduated in July 2019.

She documented her medical journey in the form of a blog 'Trust Your Gut' and also on her Instagram.

Every element of Billie's life is online, which she describes as "the good, the bad and the ugly." She updates her followers on everything from her hospital appointments, iron transfusions and bag leaks, to the best fashion lines to comfortably fit over a stoma bag. She also provides advice on the best brand of stoma bag to use as well as publishing 'how to' videos on changing a stoma bag.

Billie started her blog and Instagram as a way to document her journey as she found the process to be cathartic. Little did she know that 3 years later, she'd have an army of people behind her.

Watch: Billie loves connecting with likeminded people through social media.

Since sharing her life online, Billie has been involved in a number of projects including working with charities, guest blogging and magazine shoots, most recently with Boots.

Taken from the summer edition of Boots Health and Beauty Magazine 2020.

Taken from the summer edition of Boots Health and Beauty Magazine 2020.

By sharing her experience so openly, Billie is raising awareness across the world. Billie knows that she's making a big impact through her social media channels to better support those with a stoma bag, whilst educating those without.

Watch: Billie is passionate about raising awareness of her condition and supporting others.

Whilst there still isn't enough awareness about ostomy patients, inspirational people like Laura, Joshua and Billie are showing that there aren't any boundaries to what a young person can achieve with their stoma bag.

Do you have a stoma and need support?

These websites provide information and guidance for those with stoma bags and those wishing to find out more:

The NHS: For medical advice.

Crohn's and Colitis UK: for help and advice on Crohn's disease and ulcerative Colitis.

Colostomy UK: A charity providing support and practical advice on life before and after surgery.

Colostomy UK's helpline: 0800 328 4257

With thanks to

Laura Hinshaw, Joshua Matthews and Billie Anderson.

♡