About the author
I’m Dani and I live in Doncaster with my husband Gareth and my three sausage dogs Vader, Spider and Wicket. My family and my ‘fur babies’ are my world.
I am still quite early on in my journey of living with a urostomy – my operation was in May this year. I’m sharing my story because I know just how it feels living with chronic health conditions and how scary it is to be told that your bladder needs to be removed.
The UA was there for me when I needed support, and this is my way of giving something back. I hope my words will help anyone facing surgery feel less frightened about what lies ahead and more confident that, with patience and support, they can overcome any challenges that come up along the way.
Unexplained symptoms
In 2012, I was working as a cardiac nurse. It was a role I loved and a big part of who I was. I also had lots of hobbies and adored horse riding. Life was busy and exciting. I’d just got engaged to Gareth, and as we settled into the home we’d bought together, we talked about getting married and the kids we hoped to have one day. It felt as if everything was falling into place.
Unfortunately, I was about to find out that life had other plans! I was 26 when I started feeling really unwell. Not only was I in pain, I’d developed a limp too. With each new test I hoped for a definite diagnosis. It felt heart-breaking not getting any answers, and the longer this went on, the harder it was to stay positive. Eventually, I was told I had a neurological disorder. But more than that, they couldn’t say – until many years later, that is.
I felt very low. My symptoms became so debilitating that I had to give up the job I loved, and we had to sell our home and find a bungalow because I could no longer cope with stairs. On top of this, and one by one, my friends began drifting away.
It was such a tough time. I was grieving for the life I used to have and the future that had once looked so bright. “Focus on the positives”, I’d tell myself, as I thought of Gareth and my family. I still had them, and deep down inside, I knew I was still me despite everything I’d lost.
Bladder diagnosis
Something that was established early on was that my bladder was no longer functioning properly, and that I’d need to be catheterised to stop me going into retention.
I was referred to a urology consultant, Mr Kumar, at Doncaster Royal Infirmary. Little did I know then that he would be on the journey with me for the next 15 years. Having diagnosed me with neurogenic bladder, which is when the bladder no longer works properly due to nerve damage or dysfunction, he fitted my first suprapubic catheter (a surgical catheter through my abdomen).
Mr Kumar tried everything to keep my catheter and bladder going. I had regular Botox injections in my bladder every six months for years as we tried to keep the symptoms under control. But eventually, the pain became so severe that in February 2025, the decision was made to remove my bladder and create a urostomy.
I came out of that appointment feeling conflicted. On the one hand, I felt relieved there was a plan, but at the same time, the thought of such life-changing surgery made me incredibly nervous. I did not waver from my decision to go ahead though. By now, I knew they’d done everything possible to save my bladder and that I simply couldn’t continue being in pain that was worsening by the day.
With my operation booked for three months’ time, I tried to keep looking forward. The urology team was amazing, and the nurses were really supportive. They understood how much I was struggling and arranged for me to have telephone appointments so that I didn’t have to travel back and forth to the hospital. They also worked with my consultant to bring my operation forward when I explained how very difficult it was to move around. I won’t lie, it was a miserable time. However, it led me to the Urostomy Association, for which I’m forever grateful.
Unwavering support
Accessing the peer support the charity provides was a game-changer. It was a relief to talk to people who understood exactly how I was feeling and could make it sound less scary.
From my very first conversation with my UA peer supporter, I began feeling more at ease. Living with a urostomy herself, she understood my fears and could explain what to expect. She said it wasn’t at all strange that I’d picked a name for my stoma already (Jeff) as it’s something many urostomates do. For the first time in a long while, I had a laugh and felt that here was someone who really understood.
Gareth and my family are fantastic and do their best to understand, but this lady had the lived experience to be able to truly empathise. Talking to her, I felt completely at ease. I came away from our chat feeling “Yes, I can actually do this”, and I can never thank her enough.
The big day
When operation day came on 6 May, Mr Kumar talked everything through with me. It was agreed that as well as having a urostomy, I’d undergo a hysterectomy to spare me any complications further down the line.
About half an hour later, they took me to theatre. Everyone there understood how anxious I was, and they were lovely. Before I knew it, I was asleep and then the next thing I knew, I was on my way to the ward. Gareth was there, waiting for me – I was so happy to see his face!
The first few days after surgery are all a bit of a blur. I struggled most with my emotions because the hysterectomy had sent me straight into early menopause, despite the surgeon leaving my ovaries in place.
Patience and encouragement
Thank goodness for such fantastic support from the hospital team and the UA support group. They frequently checked in with me to see how I was doing, and their kindness was just what I needed.
Throughout my health struggles, my medical and surgical teams have been brilliant. I’ve been extremely fortunate to have such a great bunch of stoma care nurses. They have been wonderful, literally holding my hand right the way through, from siting my stoma to recovering on the ward and going back home. They have patiently guided me through any panics and given me pep talks whenever they were needed. I so appreciate their confidence in me when I couldn’t feel it for myself. I can’t thank them enough.
Recovery hasn’t been plain sailing, especially as I live with asthma, Hypermobile Ehlers-Danlos Syndrome and functional neurological disorder, to name just three of my health conditions.
Finding freedom
Sometimes, it’s felt really hard but each day is getting better. ‘Jeff’ the stoma has changed my life completely – for the better! I’m no longer stuck in bed, and while my mobility is restricted because of my other health conditions, I can at least sit down to shower, and I can cook and bake from a chair.
Recently, I even bought a new dress for my nephew’s 18th birthday party. Being able to wear what I want feels great – nobody has to know I have a stoma unless I want to tell them, and I no longer feel bad about myself. I have freedom to move around on my crutches, unlike before when my catheter was permanently attached to a night bag. It really does feel liberating!
To anyone reading this, my message is one of hope. You are worth fighting for, so never give up. I’m very fortunate to have people who’ve encouraged and supported me all the way, from Gareth and my family to the hospital team and my UA peer supporter. But ultimately, it’s been down to my own determination to keep going.
Here’s to the future!
