I want to share with you my experience of bladder problems and the different experiences I have had over the years since sustaining my spinal cord injury. I fully appreciate that your bladder is a difficult and personal subject to talk about, but from my experience, getting the right advice and help with any issues has been beneficial. Things change over the years health-wise with a spinal cord injury, and it’s really important that you keep on top of these changes.
To allow me to be taken from Harrogate District Hospital to Leeds General Infirmary after my accident in 2008, where the hospital staff would be able to further look after my Spinal Cord Injury and the rest of my injuries, I had a urethral catheter put in. A urethral catheter is not suitable for people who would require one for long term use.
I had an operation for my Suprapubic catheter to be fitted on December 23rd while I was in The Princess Royal Spinal Unit in Sheffield, so you could say that it was an early Christmas present! The operation involves a surgeon making a small cut in the abdomen, usually a few inches below the belly button and inserting the catheter straight into the bladder. A small balloon, which is filled with fluid, at the tip of the catheter is inflated to prevent it from falling out. Afterwards, a doctor or nurse can change the catheter in your own home.
I have a leg bag attached to my catheter 24 hours a day, with a larger bag attached overnight. My leg bag has always been something I have been conscious of and wanted to hide. For ten years after my accident, I would always have a scarf or cardigan on my lap when I wore jeans or certain skirts to hide it. That changed when a friend made me a black expandable pouch for it to go in it, meaning that it just sits down the side of my wheelchair, and I didn’t need to wear anything on my lap again. Dresses or long skirts are much easier to disguise my leg bag as it can just sit on my knee underneath.
While I was in the spinal unit, the Doctors and Nurses encouraged me to clip and release my catheter. This means that during the day, whilst I was out of bed, a valve was fitted to the end of my catheter and clipped off, allowing my bladder to retain some urine. It is good practice to maintain some capacity in the bladder as when it washes out, it gets rid of any debris, therefore reducing the risk of infection and bladder stones. I gradually built up my time doing this until I managed to reach 4 hours.
Unfortunately, as the years have gone by, I have no longer been able to clip and release as I tend to bypass after only 10-20 minutes.
My catheter is changed at home on a monthly basis by one of the District Nurses. They will deflate the balloon that holds the catheter in my bladder with a syringe and check how much fluid is drained. They then carefully pull the catheter out, measuring the length of it to ensure they know how to far to put the new one in. When the new catheter is in place, they then reinflate the balloon. They then wait to ensure the new leg bag starts to collect urine, so they know it’s in the right place.
In early 2019, I started regularly bypassing, which meant that urine could come out of my urethra or the hole in my abdomen where my catheter goes through (I can bypass out of one or both of them). It was getting to the stage where my catheter was getting blocked quite often. Sometimes my team were able to give the tube a wiggle and it would unblock it, but there were other times where I would have to ask the District Nurses to come and do an emergency catheter change.
As there was no pattern to me bypassing, I began to start to feel very anxious about it happening in public. Rebecca had to stand in for me during one talk after I had bypassed one morning before leaving the house to do one of my Road Safety presentations. Subsequently, I then started to find it really hard spending time with my friends and family in case it happened in front of them.
If I need to have an emergency change, I am given Gentamicin, which is an antibiotic that is injected into my tummy or thigh.
Everybody will have bits of sediment in their urine, but because I have a catheter, it gets blocked. In the past, I have had regular bladder washouts, which are done in the hope they would prevent emergency catheter changes. A bladder washout is a technique that is used to flush out the catheter and bladder. A catheter maintenance solution is introduced into the bladder through the catheter, and then any debris will drain back out with the solution.
Because of my spinal cord injury, I need to be extremely cautious of my catheter getting blocked. I see myself as lucky that I am able to feel any pain or spasms in my bladder, as this means I can normally alert my carers to it. If I get symptoms such as developing a sudden headache, sweating and high blood pressure, it can result in autonomic dysreflexia occurring. I have taken Oxybutynin every day for the past ten years, which is a medication that is used to treat overactive bladder and helps to prevent bladder spasms.
In April 2019, I had some bladder stones removed at my local hospital. There was a lot of debating whether to give me a general anaesthetic or just a spinal block. I thought that the spinal block would be the best option for me as I wouldn’t need to be put to sleep and should be out of hospital the same day. Due to my spinal cord injury and the fact that I have a tracheostomy and use a ventilator, I needed to have a bed on standby in Intensive Care afterwards, just in case there were any complications with the anaesthetic.
The procedure to remove the stones is called a transurethral cystolitholapaxy. This involves a surgeon inserting a small, rigid tube with a camera at the end (a cystoscope) into your urethra and up into your bladder and then pulling the bladder stones out.
The Nurses and Doctors had told me that for a short time after the operation, I should still expect small bits of debris to pass through my catheter, which would be the remains of the stones they removed, but to date, the debris has never stopped coming through.
I was due to have the procedure again just before Christmas, but due to the Covid-19 pandemic, it has put back for a few months. Fortunately, I do not need to call the District Nurses out as often as I was two years ago for emergency catheter changes, and hopefully, I will have had the procedure done before it gets any worse.