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It’s important to find an intermittent catheter that fits your body and lifestyle, and also helps protect against urinary tract infections (UTIs). Anita wishes catheter choice was common knowledge in infection prevention education.
Anita lives in the UK and, some years ago, she collapsed in a restaurant. Following an MRI, she received a diagnosis of Cauda Equina Syndrome. Since then, she has been successfully managing her bladder through intermittent self-catheterisation (ISC). She was an intensive care nurse at the time, so she knew she was doing everything properly in terms of urinary tract infection (UTI) prevention techniques. During the first seven years, she experienced just one UTI; then she had seven in just one year. The constant UTIs played havoc with Anita’s life, self-confidence, and positive attitude, but she was determined to battle on.
Anita had to advocate for herself to get answers. She knew something wasn’t right. Nothing had changed in her ISC routine, so she believed something within her body had. She pushed her healthcare team to investigate it further, and eventually had urodynamic testing which revealed she was right. She was then able to make the necessary changes and reduce her chances of future UTI infections.
Anita wishes that those involved with her UTI treatment and prevention were all on the same page and thinks that a UTI care plan could solve some of the common problems.
A lack of UTI prevention education
I was on a general ward in the hospital following my collapse because there weren’t any beds in the spinal injury unit. A nurse came to show me how to self-catheterise. As an intensive care unit nurse, myself, I’d had experience of catheterising other people, so I wasn’t too worried about it. However, the experience was unpleasant. She just drew the curtains around the bed to form a cubicle, so it didn’t feel very dignified. I felt like everyone else on the ward could hear what was going on.
I was given a choice between long and short catheters, and that was it. I really wish someone had told me, at that point, the choice of catheters is huge. If I was teaching people to ISC, I would be encouraging people to try lots of different ones, to find the right one to suit the individual’s body and lifestyle.
My nursing background meant that I already knew all the UTI infection prevention techniques such as hand washing and not touching the catheters before insertion. However, nobody mentioned anything else about UTIs to me. Being told there’s catheters out there that could help prevent UTIs is really important information, that I believe anyone doing ISC should be made aware of from the start.
Incontinence due to UTIs was soul destroying
For the first seven years, I didn’t get any UTIs, so I knew I was doing everything right. Then I got seven in just one year.
I was still working in the intensive care unit when I first started experiencing UTIs. I remember often feeling embarrassed because I’d get the sweats at work, and it would literally be running down my face. Then there was the incontinence side of things, which I feel is much less socially accepted than any of the other symptoms. I now know that I’ve got an overactive bladder, but I wasn’t aware of that at the time. The incontinence was often an issue when I went from sitting to standing, like when I was getting out of the car. I’d find myself stood at my front door with urine running down my legs and into my shoes, feeling like I might burst into tears. I’m usually known for being Mrs. Positive, but the incontinence really took its toll on my confidence.
Hallucinations made me question my judgement
My worst experience of a UTI was during the COVID-19 lockdown. I thought I was getting COVID because I felt generally unwell and had a temperature. I did what I would have advised anyone to do in that situation – I took some paracetamol, got some fluids in me, and went to bed. The next day I woke up feeling dizzy and sick, and still generally unwell. I’d been so unwell that I’d slept right through the night and not catheterised every four hours like I normally would have. That’s when I started thinking I might have a UTI.
I remember looking out of the window and seeing little bunnies sitting in my apple tree. I immediately knew that something wasn’t right; this was bad. I knew those bunnies couldn’t really be there, but I could see them as clear as day! Realising that I was hallucinating was scary, but it also made me question my own judgement. I even started wondering whether I might be imagining I had a UTI.
I did have a UTI, and the doctor told me off for not calling them sooner. Of course, I understood why the doctor was telling me off, but at the same time, I’m aware UTI symptoms can include drowsiness and confusion. It complicates taking control of my own health when it comes to UTIs.
My wish is to have a UTI care plan
My son has a care plan for his asthma, which is useful because it tells anyone that needs to know what to do if he is unwell with it. I’d love to have something like that for my UTIs. Sometimes, it feels like doctors are talking down to me or not listening. It can feel like a battle just to prove I even have a UTI. They don’t seem to fully grasp that I know my own body, and that just because I’m not having what they’d consider “classic” signs, doesn’t mean I don’t have a UTI coming. It’s like they have boxes to tick and if I’m not ticking them, then it can’t be a UTI. For me, there’s never going to be a burning sensation because I don’t have any sensation. I think that doctors should be aware of this. I believe that they should listen more and acknowledge that sometimes, we know and understand our bodies better than they do.
It would be great if there was a care plan that laid out things like what MY common UTI symptoms are, what action should be taken, and what I should be prescribed. Even though I know the basic, sensible things to do, and I know what the signs of sepsis are, I can’t always see through my clinically trained eyes when I’m unwell. When I have a UTI, my judgement is often not as good as it should be. If I had a care plan, I’d not only be able to refer the doctors to it, but I’d be able to refer to it myself, too. I think that would make me feel empowered; like I’m more in control of my care, and, better able to advocate for myself when my judgement is off.
UTI symptoms stop me living the life I want to live
I’m usually someone who’s always thinking about how I can adapt to allow myself to do the things I want to do, but I feel like having a UTI stops me in my tracks. Incontinence and odour from my urine are usually some of the first UTI symptoms I notice; both of which make me feel like I can’t leave the house. I have no sensation of needing to go to the toilet, so when I have a UTI, it can just come out. There are times when I’ll get out of the shower, and I still feel dirty and smelly. I find myself continually asking my partner if he can smell me. I think it’s probably just me that’s hyper aware of it, but it really knocks my confidence.
I don’t feel like I can live the life I want to live when I’m constantly worrying about UTIs. I don’t even feel like I can just pop out for a coffee with friends because I’m constantly anxious about incontinence and odour.
I knew something was wrong when I started experiencing frequent UTIs
Having gone those first seven years without experiencing UTIs, when I started getting them frequently, I began to wonder what could have changed. The catheters and what I was doing hadn’t, so I thought something within my body must have. In my opinion, it should have been picked up earlier. I had to really push to get some answers, but I knew it would be worth it if it meant being able to live my life again, without the fear of constant UTIs.
Thankfully, I was eventually listened to and sent for urodynamics testing. The tests showed that the catheters weren’t draining my bladder properly anymore, which meant I needed to use longer catheters. I’d been retaining more urine than I had previously, increasing my chances of getting a UTI. At that point, I started really looking into catheters; researching whether there was a catheter out there that would give me a bit more protection against UTIs, as well as piece of mind.
Finding the right catheters allows me to focus my attention on other things
I tried some Hollister catheters after finding out about them on a Cauda Equina Syndrome Facebook group. I trialed lots of different products and finally found the catheters which I feel suit me and my lifestyle. They’re just that little bit longer than the ones I was already using, but it’s made a huge difference. I have a bladder prolapse, and that little bit of extra length was just what I needed to empty my bladder fully! Now, I know I’m using the best catheters for me, and that allows me to focus my attention on doing everything I can to protect my bladder and kidneys from future infections.
Anita is an Infyna™ 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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