Explaining my condition: self-catheterising

I am an ERIC Young Champion  I am 14 years old and from Wigan. I want to show people how my life has been and to help young people who may have to do this in the future.

I have to self-catheterise 3-4 times a day due to a condition diagnosed as an overactive bladder. However, I still do not have an answer as to how and why it happened. I now have Botox injected into my bladder 3 times a year in order to paralyse my bladder. As it no longer works at all, I have to catheterise.

How my condition began

One night when I was eight, I got a sharp pain in my lower left stomach. I went to the hospital and they said there was nothing wrong and they just sent me back home. This happened multiple times until we decided to go to Alder Hay children's hospital in Liverpool where they kept me in and ran some tests. They could not find anything wrong but my bladder just stopped working. I lost all control over my bladder and tried many medicines and treatments; however nothing really worked.

After over a year, we decided to try Botox which completely paralysed it so it could not release any urine. For this reason, I have to self-catheterise to drain my bladder and stop my kidneys being affected.

How it affects everyday life

It affects me every day as I have to always think “Do I have my catheters?” “When do I need to use the bathroom?”. In school I have to leave lessons to use the bathroom as I have to go every three hours. This can cause stress as I get embarrassed having to leave. For this reason I have a toilet pass so no questions are asked. It can also be a stress if the toilets are not clean as this can cause infection.

Managing my condition

Over the years I have got used to the whole process and do not think much of this now. However, I do still feel the affects and have had to develop methods or things to make my everyday life easier. For example, in order to prevent infection I carry wipes, hand gel and spare catheters around with me so I can make sure I am hygienic when I have to go. I take antibiotics every night to try and help fight any infections and I just try and plan ahead of long journeys or days out.

What support do I wish young people who are catheterised had?

I just think that more resources would be helpful. Books or articles about how to use a catheter would have been useful to me. I also think all toilets in public should have bins to dispose of things like this.

The advice I would give to other young people who does have to or will have to catheterise
I would say don’t worry too much as it may feel like a really big thing at the minute but you do get used to it. Over time you learn how to use the catheters and get used to all of the things that are helpful to do. I think that you should tell people how you feel and ask them if you are unsure about anything.

Managing at school

Have a look at the resources you can get and try and figure out how you will do it at school. In my experience I think you should tell school so they can accommodate you and put things in place to make life easier for you at school. I have a toilet pass so that no teachers question when you need to use the bathroom. This really helps as it takes a lot of stress of wondering if you will be allowed to go.

Helpful resources about using a catheter

Patient instructions

Catheter guides for children - I would really recommend this link for all children as it has games to introduce catheters.

And finally...

I would always say talk to doctors if you are unsure before you look at these as catheterisation is not the same for everyone. Overall, please don’t be ashamed and do speak to people if you feel worried.