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Kris has been experiencing urinary tract infections (UTIs) since his spinal cord injury in 2017. He started performing intermittent self- (ISC) following his injury, but wishes he'd been warned that recurrent UTIs were possible and what signs to look out for.
Kris lives in the UK. As an avid golfer and social butterfly, he never let his spinal injury and resulting loss in bladder sensation keep him from living his life to the fullest. However, he soon realised the importance of keeping track of how much time had passed between catheterisations. It wasn't until he experienced a painful UTI that Kris realised the importance of monitoring his fluid intake and being mindful of his catheterisation needs, even during enjoying his favourite activities. Now, Kris takes every opportunity to educate others on the importance of bladder health and staying vigilant in self-care practices.
A common challenge for those with spinal cord injuries: forgetting to self-catheterise due to lack of bladder sensation
My spinal injury means I have no sensation in my bladder. And because I have an overactive bladder too, in the early days as little as 100 ml of urine being retained could cause it to leak out. I now have bladder Botox every six months which helps to alleviate this issue.
As someone who lives with no bladder sensation, I have learned the hard way that time can easily slip away from me, especially when I'm out with friends or playing a round of golf. I may forget to catheterise, which can lead to UTIs. That's why I have made it a priority to keep a close eye on my fluid intake and stay mindful of my catheterisation schedule, no matter where I am or what I am doing.
The importance of UTI prevention education for a healthier and happier life
Reflecting on my journey since I was discharged from hospital, I can't help but feel there was a major information gap, especially when it came to education on UTIs. I was told to use gloves and hand sanitiser, but I had no idea why. No one warned me of the very real risk of developing a UTI or what symptoms to look out for.
And when it came to catheter choice, I was left in the dark. I only found out about non-touch catheters, which prevent contamination and reduce the risk of infection, after struggling with the catheters I was initially given. Why wasn't this option discussed with me from the beginning? Why wasn't I given a say in the type of catheter I wanted to use? It's like being handed the keys to a car without even knowing what make or model it is. In hindsight, I wish I had been given more information and options, so that I could have made informed decisions about my own health and wellbeing.
Living with the impact of UTIs
I have experienced numerous UTIs, but fortunately, they have mostly been mild. My tell-tale signs are usually subtle, such as slight ankle swelling, cloudy urine, and spasms. I suspect that I might just catch them early because I know what to look out for, but in the beginning, this was not the case.
There have been two instances where the symptoms were much worse, including shivering and hallucinations. During one of those episodes, I was out with a friend from my child's school when I suddenly started shivering and almost passed out. Luckily, my friend was quick to notice and brought me back home. My partner called the medical helpline, and a doctor arrived to administer a single antibiotic dose. The doctor considered sending me to the hospital due to concerns about sepsis but decided against it. The antibiotic worked its magic, and I was feeling better by the next morning. I contacted my General Practitioner (GP) and received another seven-day antibiotic course to be safe.
Despite my frequent UTIs, I feel fortunate that they don't hinder my daily life, and I can still enjoy activities such as playing golf and spending time with loved ones. I drink more water and take antibiotics as needed to manage my UTIs.
The Silent Pain: Living in fear of UTIs
I often experience leakage during a UTI. It's not just a minor inconvenience – the odour of the urine is quite strong and it can be embarrassing, leaving me feeling anxious and down.
If I'm going out with friends when I have a UTI, I must wear a pad in my underwear. At night, I must wear something similar (a pull up) to bed. I set alarms to go to the toilet during the night, but sometimes I still wake up to find the pull up half full of urine. Then, I spend the next 30 minutes cleaning myself up and getting changed. The whole process leaves me exhausted the next day.
For me, the worst part of having a UTI is dealing with the inconvenience of leakage, the embarrassment of having to wear pull-ups or pads, and having to explain my condition to every new GP or nurse I see. Fortunately, at my GP practice I know which two doctors are familiar with my circumstances, so I can easily drop in a sample and get started on treatment. Otherwise, I end up wasting time repeating everything to new doctors when the others already know and the conversation could have been over in just 30 seconds.
How I manage my UTIs
When I experience symptoms of a UTI, I check my urine with a dipstick test that my doctor provided me with. It's a quick and easy test that I can do at home. If the test shows positive for a UTI, I call my doctor, who usually starts me on antibiotics. However, if the bacteria is resistant to the prescribed antibiotic, my doctor calls me and prescribes a different one.
Unfortunately, not all antibiotics work for me, so I'm currently trying a medicine that I inject into my bladder via a catheter once a week for six weeks. I'm halfway through the treatment and I'm hoping it will work. The medicine is designed to strengthen the bladder wall, which would greatly improve my condition if it's effective. When antibiotics don't work for me, I find myself feeling anxious and alone, wondering how many more antibiotics I must try and how long I have to wear a pad or a pull-up.
How my friends helped me with my injury and UTIs
I was 36 years old when I sustained my injury. Thankfully, I already had a tight-knit group of friends who have been incredibly supportive throughout my journey. Initially, I had to educate and explain certain things to them, but they were more than willing to learn and understand my needs. They have been absolutely brilliant and I feel that they are fully on board with me.
Before heading out anywhere, they'll always ask if I have enough catheters in my bag. During a recent weekend away in Bournemouth, UK, my friends were especially helpful. They would gently tap me on the shoulder and ask if I needed to go to the toilet, especially after consuming certain drinks that tend to go straight through me. They even gave me a warning if we were about to leave a venue so I could use the toilet beforehand.
This kind of friendship is invaluable to me, as it helps combat the feelings of loneliness and isolation that can sometimes come with ISC and UTIs.
Kris is a VaPro™ catheter user who has received compensation for this statement. The testimonials, statements, and opinions presented are applicable to the person depicted. These testimonials are representative of that person’s experiences, but the exact results and experience will be unique and individual to each person.
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