About the author
My name is Lorna Coates. I’m 31 and live in Newcastle with my husband Chris and our two pugs, Dolly and Bertie. I work full time for a communications company, which isn’t always easy given that I live with a chronic condition. But I’m a huge believer in raising awareness and using my story to help others. That’s why I set up my website and Instagram account – more of which later!
Problems from a young age
I was really young when I began experiencing problems with UTIs, and at 16 I was referred to a urologist when they became recurrent and GPs struggled to out why. Despite various tests, the urologist couldn’t identify the reason so treated me with long-term antibiotics. Eventually, the infections cleared but the symptoms I was having just got worse.
When my urine test results kept coming back clear of infection and my bladder wall showed no issues on the camera, it was very hard to hear, making me feel as if my symptoms were all in my head. The pain dragged on for hours, sometimes days and even weeks. The only way I can describe it is like having a bowling ball in my bladder. Over and over, I’d feel as if I needed the toilet, and every time I urinated it burned so badly. On top of this came crushing fatigue. I struggled to wear certain clothes around my pelvis because they seemed to trigger a flare in my symptoms, especially the pain.
Desperate for answers
My health deteriorated to the point where I was bedbound and unable to enjoy life at all. I especially missed going out and having fun with my friends, and as the weeks turned into months, I felt increasingly isolated, anxious and depressed.
Desperate for answers I’d spend hours combing the internet, trying to find helpful information until – finally – I came across an article about interstitial cystitis (IC), also known as painful bladder syndrome. Reading it was like a light flicking on.
IC is a chronic condition which, unlike a UTI, does not respond to antibiotics because it is not caused by an infection. Common symptoms include pelvic pressure and chronic pelvic pain, frequent need to urinate, and a burning sensation on doing so. I ticked all the boxes.
After many years battling to get answers about my health, being armed with this information helped me get a diagnosis of IC after chronic UTIs were eventually ruled out. It was such a relief to put a name to what was making me so unwell and, at last, to be on a path to what I hoped would be recovery.
With IC, some people can control their symptoms through medication and diet while others find this doesn’t work for them. In rare cases, like mine, bladder removal is the only option to get back quality of life.
Seven hours of surgery
I was 28 when I was offered the surgery by my urologist, welcoming it with open arms. Even though I knew the operation meant I would never urinate the usual way again, the prospect of being without pain and able to get back to living my life gave me the hope I’d been craving. I had suffered with my bladder for more than 12 years.
On 8 February 2022 I went through seven hours of major open surgery where they removed my bladder and almost all of my urethra, before creating my urostomy with part of my small bowel. Afterwards, as the numbing effect of the epidural gradually wore off, I realised that the pain of IC had gone.
Adapting to life with Stella
Of course, it took time to recover after such a big operation. Plus, I had the not-so-small matter of getting used to my bag, but people often remark on how well I have adapted to my new way of life. It was my stoma nurse who recommended naming my urostomy and so we decided to call her Stella.
Now, when I look at Stella and my scars all I see is strength. I love what they represent. That’s not to say life is free of struggles. Having a urostomy can leave people more susceptible to urinary infections, and unfortunately for me I’m part of the minority who experience these regularly. My urologist has said my only option is to have the UTIs treated with antibiotics as and when they occur, and when taking the tablets orally doesn’t work, I have to visit the hospital to receive them intravenously. This is because I’ve become resistant to some of the antibiotics I have taken over the years and the mix of different bacteria that grow.
Along with the UTIs comes intense fatigue. More than just a feeling of tiredness, it’s all I can do to keep my eyes open and complete the smallest of tasks. On those days, I have to remind myself that I can only do my best.
No regrets
While I’m sad it took so many years to get the diagnosis that led to my stoma surgery and freedom from the debilitating pain of IC, I have no regrets about the operation itself.
Stella the stoma has given me my life back, so I remember that and always try to focus on the positives. If you’ve got your surgery coming up, or you’re in the early stages of recovery and wondering if you’ll ever feel like yourself again, please know that you will get there, step by step.
Making a difference
Life is busy but it’s important to me to make time to help others. I have so much to share from my own experience that may be useful to people feeling anxious because of IC or the challenge of getting used to life with a bag.
I also want to help create greater awareness of the ‘forgotten stoma’. Urostomies are rarer than colostomies and ileostomies, so as a urostomate it’s easy to feel overlooked.
All of this has motivated me to set up my website www.littlemissurostomy.com and @little_miss_urostomy Instagram account, where I share my journey, publish tips that have helped me and let people know about the IC 2 Urostomy Support Group. This is a Facebook group for anyone facing urostomy surgery because of interstitial cystitis, a safe place to vent, ask questions and seek support from people who know how it feels. I’m one of the group’s admins and it’s rewarding to be part of such a helpful, friendly community.
IC took away most of my teenage years and robbed me of almost all of my twenties. It affected my mental health and impacted my relationships, too. I don’t want anyone else to feel lost, confused or alone. That’s why I’m determined to make a difference and show them there is hope.
