Unspoken rosebud my ileostomy journey
Wednesday, May 25, 2022
Helinka Carr describes how stoma surgery encouraged her to put her sewing skills into launching an ostomy-friendly fashion brand.
I am just a woman, nothing special. I am a mum, a grandma of four mischievous boys and a wife.
With over 25 years’ experience in health and social care, I have spent the majority of my life helping children through their school life and supporting victims of domestic abuse, addiction, mental health crises and the sad reality of homelessness. This has been very rewarding, but at times it has also been extremely difficult.
My last post was as a manager of a hostel for single men. I enjoyed this job immensely, and I was close to many of the staff and residents. I loved to lead and help however I could, and I was bringing other staff on board with ideas to provide the hostel residents with more opportunities, more creativity and education. I hoped I would be there for good, but I did not feel I was receiving the support and encouragement I needed from the management, so I decided to leave and make my own path.
Since then, I have worked as a PA while I set up my own business providing alternative medicine.
But this isn’t my entire story. Nothing could prepare me for the distressing news I received in June 2013: a diagnosis of stage 3 rectal cancer. This came as a complete shock, as I had none of the symptoms that I knew to look out for from NHS bowel cancer awareness campaigns.
In the 6 months before my diagnosis, I had been having irritating and often painful bowel symptoms. I didn’t take these seriously at first, assuming they were the result of a bowel disorder that runs through the family. It was my daughter who, after seeing me in excruciating pain, convinced me to take action.
I went to the colonoscopy appointment on my own, convinced that there would be no hidden issues. I laughed with the nurse, who explained that I would be having between three and six biopsies taken that day. I assumed 46 was too young to get something as dreadful as a cancer diagnosis.
I had the task of telling my family. My husband was first—he was waiting outside the hospital for me. My son was second; he was at work in Leeds, but he didn’t need to be told—he could tell—and he drove straight to us. Next came my daughter—she was the hardest person to tell, as, after all, it was her who had cajoled me into to consulting a doctor in the first place.
I began to prepare support for my family. I wasn’t worried about myself—I knew I would be looked after, no matter my condition. It’s always the families who are left to their own devices to pick up the pieces and deal with the pain on their own. I was given affirmations, such as ‘You’re the best person to get this, you are strong!’, and I made sure I was strong, not for myself, but for the family I loved.
From diagnosis, I became very busy, as my calendar filled with scans and oncology consultations. Soon, I was presented with different treatment options. I decided against chemotherapy, where medicine is used to kill the cancer cells, as it seemed the most disruptive and potentially damaging treatment I could go for. On the recommendation of another oncologist, I instead tried radiotherapy, where radiation is used to kill the cancer cells.
Meanwhile, to help deal with this diagnosis in mind as well as body, I practised alternative medicine techniques on myself, including reiki and crystal healing.
(Editor’s note: Alternative, traditional and spiritual healing practices may have cultural, personal and psychological value, but they must not be used as a replacement for evidence-based medicine or against the advice of a qualified medical professional.)
I even visualised myself in a retro Space Invaders-style game, where I would shoot up the cancer until it was no longer a threat.
[A selection of Helinka’s stoma-friendly creations for Unspoken Rosebud]
I was also advised to undergo urgent surgery to remove the affected part of my bowel, which would involve the creation of a temporary ileostomy. I was told that I would have the stoma for 6 weeks. However, I suspect this was a white lie to make sure I accepted the surgery I so desperately needed, as I ended up having it for nearly twice as long. By the end of this period, according to the consultant, the tumour had shrunk by 45%, and I had a smaller scar and shorter recovery time than expected.
After my original ileostomy was reversed and I had been discharged from hospital, I came home to find that I was no longer able to control my bowel. It turned out that this was the result of pelvic radiation disease, a long-term side effect of the treatment.
My quality of life was crushed, and my daily life was a struggle. I spent 3 years fighting this, until I knew what needed to be done. In December 2016, I had surgery to give me a permanent ileostomy.
When I first had my permanent stoma, my confidence and mental health plummeted. While I was still recovering from the operation, I decided to do something about it and went on the hunt for good-quality lingerie suitable for a person with a stoma.
There was an abundance of practical medical wear, but there was nothing on the market to accommodate the needs of me and my new stoma.
So I planned to fill this gap in the industry by creating beautiful accessories for myself and other survivors, who wanted to rediscover their confidence and feel beautiful in their own bodies once again. From the start, I had the support of my husband and my daughter, and she now occasionally helps out when things are busy.
I already had the ability to sew, but it took patience to learn to use delicate materials such as silk and lace. While on holiday, I came across a lovely training programme at a sewing school near Leek. Inquiries were made, and training was booked. After 2 years of dedication, practice and perfecting our designs, it was time for my company to get up and running. We gained access to a business mentor who suggested we begin small, supplying only certain lingerie and then building ourselves up.
With my passion and my story to guide me, I opened my Etsy shop, Unspoken Rosebud, in February 2019.
I use high-quality fabrics to help women feel exquisite, without worrying about the stoma on their tummy. Meanwhile, any leftover fabric is donated to a charity where I volunteer to help the environment. I haven’t stopped yet. I plan on creating more breathable, glamorous lingerie, nightwear and swimwear for those who need a little support with their stoma.
[Helinka at work]
I am proud to have an international business that helps women boost their confidence, rediscover their strength and feel good about themselves. After all that I have been through, I count my blessings. I have created many more memories with my family, and I am grateful for what life has thrown at me.
Helinka Carrr is the owner of Unspoken Rosebud, a stoma-friendly fashion brand based in Leeds