Just a quick note before I talk about this topic and awareness week. I want to say from the bottom of my heart thank you for all the support, comments and messages I have had since this last hospital admission. It has been a hard one remembering how poorly I can get when the sepsis hits. I have achieved amazing things this year, and I almost forgot I was ill, so this was a massive bump down to earth but I am changing a few things so I can continue spreading awareness and campaigning.
So let’s talk about 'Catheter Awareness Week!' I only realised this was an awareness week when I saw a few tweets on Monday. I knew it was ‘World Continence Week’ 18-24 June, but I didn’t realise ‘Catheter Awareness Week’ coincided with this.
If anybody reading this is unsure about the different types of catheters, I wrote a post explaining all the different types of urinary diversions which you can read here, and this may help clarify a few things.
What is ‘Catheter Awareness Week’?
This is an awareness week lasting five days of events and activities to raise awareness of the risks of CAUTI (Catheter-Associated Urinary Tract Infections), reduce harm, fight stigma and improve general catheter care. Hosted by The Health Innovation Network and seems to be mainly South London, but they hope this will spread further.
CAUTI is such a huge issue when you have a catheter. You are more prone to infections which can make life with a catheter hard and can lead to further complications regarding kidneys and urosepsis. This week seems to be mainly aimed at informing Healthcare Professionals about how hospitals can reduce these infections and improve catheter care.
Why am I interested?
Many of you will know that my darkest times were when I had a catheter. At 20/21 I had to start doing Intermittent Self Catherising (ISC) which seemed to not work very well with me, and I was still in retention. I was then changed to a urethral Indwelling Catheter (IDC) which was really tough the spasms felt like my bladder was given birth to my catheter. Then lastly I had to have a Supra-Pubic Catheter (SPC) that I had for seven years until my cells mutated in my bladder and this was removed in 2015 and a urostomy formed. It was a tough time with little support. At that time I found no community openly talking about what it is actually like to live at a young age with a long-term catheter. It held me back, my life was on hold, and I resigned to thinking I would be like this forever with this SPC and terrible spasms.
This is why this topic is so close to my heart, having my cells mutate and having to have my urostomy removed within two weeks has given me a second go at life! I am now living again, but for a long time, I was barely existing. I never want to forget that time and how lonely it was. Ostomates have such fantastic support from charities and groups, but there still seems to be very little for people that have to live with catheters. There is a facebook group for catheters which are great and the Bladder and Bowel Community do great work, but I don’t think there is a charity purely for people with long-term catheters. I hope in the future this will change.
It would be amazing that in years to come Catheter Awareness week can be brought into the mainstream media with patients stepping forward sharing their story to help break this stigma.
Before I started this blog Rocking2stomas and before my urostomy I actually bought the domain name ‘Catheter Care’ and my dream was to start a blog about this because I found there was so little support but I was too ill to continue with this. Now my blog is about stomas, but I also want to be able to highlight this issue about catheters and how support is needed to help live life with catheters.
Please, can you share, retweet and comment to help break the stigma of living with a catheter!
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