How life with a stoma after bowel cancer inspired Leeds woman to create lingerie from loft of her home

What stemmed from her own desire to find “beautiful” underwear that would accommodate her own stoma blossomed into the small business Unspoken Rosebud, run solely from Helinka’s house in Bramley, Leeds.

Armed with her sewing machine and a handpicked selection of silk, cotton jersey and lace fabrics, the 55-year-old produces up to 45 stoma bag lingerie covers every week.

The designs wrap around the whole stomach and have been ordered from as far away as New Zealand.

“I’m a woman who likes to wear matching underwear and I struggled to find anything that looked beautiful with a stoma,” Helinka says.

She started talking to a friend about making lingerie. Her long-term goal is to make matching bras, knickers and stoma bag lingerie covers. She launched in February 2019, producing the latter.

“I’m proud with the feedback I get from my customers and how it’s making their lives better and how it’s empowering them,” she says.

Helinka was diagnosed with bowel cancer in 2013, after experiencing sporadic bleeding and stomach cramps and being persuaded by her daughter to inform her GP.

Helinka initially suspected diverticulitis, a digestive condition that affects the large intestine, as there is history in her family.

But her doctor raised the possibility of cancer and sent her for a colonoscopy test - a procedure to look inside the bowel.

“As the camera went in, they saw this soft cauliflower looking thing is how I’d describe it,” Helinka recalls. “The atmosphere in the room changed. But I didn’t know what they were looking at, I didn’t know that it wasn’t meant to be there.”

Helinka was diagnosed with stage 3 bowel cancer, meaning the cancer had also spread to nearby lymph nodes.

“I just thought of my family. I wasn’t bothered about me,” says Helinka, who formerly worked managing a men’s hostel. I just wanted to make sure that they had the right support.

“I’ve worked in health and social care for over 20 years and I knew the system would look after me...Then I thought, I’ll beat it, it’s not an issue, not realising the full magnitude and the size it was.”

Helinka had radiotherapy followed by an operation to remove the cancer, that left her with a stoma - an opening on the front of the stomach which allows waste to be collected in a pouch on the outside of the body.

Helinka’s stoma was temporary whilst she recovered from the surgery and it was reversed after 11 weeks. But the cancer and treatment had caused more damage than originally suspected, leaving her with little control over her bowel.

"I had three years of hell to be honest, incontinent, which was just not pleasant,” she says. “If I said ‘toilet dash’ to my family, they knew just to leave me alone. No matter what else was happening in the world, I was upstairs in the toilet. It was a horrible time.”

Helinka used the time indoors to undertake courses to become a clinical hypnotherapist and says she used complementary healing therapies when her bowel cancer spread to her lungs in the years following her initial diagnosis. She is now four years cancer-free.

In December 2016, she had an ileostomy operation, creating a stoma once again. “I was a bit annoyed I had to have it again but was relieved I was going to get the freedom to get out

“I’d been stuck in the house which was all impacting emotionally and psychologically. I couldn’t go back to work, I couldn’t do anything. That’s not a quality of life so I wanted a quality of life back.

“I felt relief afterwards because at least now I had some form of control. But obviously you’ve got this appendage stuck to your body and it was sore as heck for a very long time.”

Helinka says she found plenty of medical underwear to buy but it wasn’t what she was used to wearing. “I wanted silk, lace and cotton jersey which allows your skin to breathe,” she says.

“I felt I wanted that to give me back some self-confidence. I can’t believe what a massive gap in the market there was for this.

“I thought there’d be beautiful, elegant, stylish lingerie for ladies with stomas but there wasn’t. To me this was such a surprise as ladies still want to be feminine and sexy regardless to the pouch.”

After two years in the pipeline, which saw Helinka attend a sewing school, create her designs, source her materials and practice making the products, she launched the businesses on online marketplace Etsy. “I didn’t have to wait too long before I was selling,” she says.

In some countries, a stoma is referred to as an ostomy so Helinka uses that name in her products too, as she sells to an international market.

She now offers a bridal range and she is also starting to move into gentswear. Matching bras and knickers are on her radar for the future and she is also considering nightwear products.

She has also launched a Facebook group, called Stoma, ostomy what a bag?, which she hopes to use as a way of collating a range of information about life with a stoma into one place.

According to Colostomy UK, a charity that supports people who have a stoma, it is estimated that one in 500 people in the country are currently living with a stoma, surgically created to divert the flow of faeces or urine

“That’s a massive audience,” Helinka says. “And it’s humbling that feedback suggests that I’m hitting the right notes with people.”

Visit www.etsy.com/uk/shop/Unspokenrosebud

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