I’m Rebecca and I live in West Berkshire. Life took a dramatic downward turn when I received multiple diagnoses in my early 30s. It has been a long road since then, but 11 years on and 45 surgeries later things are finally looking up – quite literally!
My story starts in 2014, when my husband Dave and I went to Mexico for a break. Life had been really busy – not only was I working crazy hours in banking, I was a year into my part-time PhD, juggling all of this with being a wife as well as a step-mum to three amazing children.
I came back from Mexico feeling unwell and suffering with chest pain. Being only 33 at the time, I put this down to my stressful job. However, in June the pain became worse and my husband persuaded me to get checked out. At the chest pain clinic my cardiologist told me he suspected I’d had a heart attack, and I was sent for an angiogram.
Little did I know what a pivotal point this would be for me. Not only was I diagnosed with a rare heart condition called prinzmetal angina, but this was also – unbeknown to me at the time – the last day of my working life.
Things went from bad to worse. I struggled to walk or do the simplest of things, and it was clear there was more going on than just the heart condition. My cardiologist sent me to several different doctors and eventually, two years later, I received a diagnosis of Ehlers Danlos Syndrome, a rare connective tissue disorder that effects almost every part of my body. Many of my joints are now so lax that they dislocate at the slightest movement.
My autonomic system, which should regulate my temperature, blood pressure, pulse and so on, doesn’t work effectively, and I have Mast Cell Activation Syndrome, which means my immune system doesn’t function properly and produces excess histamine, causing uncontrolled allergic reactions. My vascular system is also heavily affected, and I get vascular spasms throughout my body, the worst being in my heart. I also have gastroparesis, leaving my stomach paralysed, so have to be fed through a tube directly into my small intestine. I’ve had 45 surgeries, including operations to fix fractures in my vertebra caused by my spine being hypermobile.
It felt incredibly tough going from being extremely active to being a full-time patient. Ehlers Danlos is a progressive condition and living with it takes its toll, not just physically but mentally too.
The turning point came in 2017, when I was awarded a scholarship through Flying Scholarships for Disabled People, and started learning to fly. I took that incredible feeling of freedom flying brings and started to turn my life and mental health around. It was time to take back control and start looking forward.
After learning to fly, I came back to earth with a bump and was straight back to hospital appointments. I was diagnosed with interstitial cystitis (IC) and embedded bladder infections. After months of antibiotics, I was taken into hospital to have a PICC line fitted so I could have IV antibiotics at home, but even after four different types, the infections still weren’t under control. As a last-ditch attempt, my urologist suggested self-catheterising and injecting an antibiotic and saline flush directly into my bladder. This was successful and for about two years we managed to keep the IC at bay.
By Christmas 2021, however, the drugs were no longer working and the pain was disabling, affecting everything in my life. My urologist started speaking to me about having a cystectomy, removing my bladder and using some bowel to make a urostomy. Due to some of my previous surgeries, my case was so complex I had to be referred to a specialist centre in London.
It was during this time I discovered the Urostomy Association and received some great advice via the Facebook group. As my skin reacts badly to a lot of things, particularly adhesives, I tested different bags before my surgery, so I knew what my skin could handle. After a couple of false starts, I got referred to the most incredible team at Guy’s Hospital London, and in September 2022 I underwent ten hours of surgery to remove my bladder and urethra, do a bowel resection and create a stoma.
The surgery was tough, and the first 24 hours afterwards were particularly hard. However, I knew it had been successful. The excruciating bladder and urethra pain had gone and five days later, I was discharged home.
It was on the way home I had my first leak. Making a conscious choice to laugh, I turned to my husband and said, “I think I just peed in your car!” My stoma nurse told me leaks were going to happen but at the end of the day, it’s just a bit of wee. I’ve only had one other leak and that was because I hadn’t connected my night bag properly. I’m sure if I had a leak in public, I would feel very different and be mortified.
I’m conscious of my bag and dress to disguise it a little – scarves are very handy to cover a full bag! I’m trying really hard to carry on with my life, especially as I’m back to my normal level of everyday pain rather than having constant bladder pain on top of it.
Four weeks after my surgery came a real highlight – my PhD graduation ceremony, which I was so thrilled to be able to attend. I sent the surgeons and stoma nurses pictures of my graduation, and I think they were as happy I made it as I was!
Then came another milestone – ordering a new motorbike. I don’t have full use of my left hand or foot because of nerve damage, and I thought I would never ride again. But with a special gearbox I don’t need my lefthand side, and I’ve found biking dungarees which are comfortable over my feeding tube and urostomy bag. Just recently, I bought myself new set of wheels!
I’m enjoying the fact I currently don’t have any surgeries planned – for the first time in nine years! I can’t sit still, so have been throwing myself back into charity work and writing a book.
I was even asked to model for a lingerie company, and last year I had a fantastic photo shoot and got my bag out in front of other people. Hopefully, I will even get back up flying again – though fully clad, of course!
- Rebecca’s story first appeared in the Spring 2023 edition of our magazine, The Journal.
- Learn more about The Journal