Mitrofanoff – what??
March 17 2020
By Aimee King
I have just had yet another exhausting conversation with a medical professional who knows nothing about my mitrofanoff, telling me all about it.
Now I understand that not many health care workers will know about my condition, but why not? something like a simple UTI which, trust me, I know a lot about, has become so difficult to deal with. A doctor tonight has told me he can’t test for my UTI because I have a catheter, so it might be that the catheter is infected, which I know it isn’t as I don’t keep a catheter in permanently. I explained this and had to wait for a phone call back, to then be told I could end up in hospital with lots of tests as it could have spread to my kidneys due to pain in my back. Normally, yes, but my kidneys are in the front and I have no pain where they are, and on trying to explain this I was spoken over multiple times until I had to hang up as I couldn’t get a word in!!
School years were tough….
I have a catheter due to suffering from spina bifida! Through school I was very secretive about my spina bifida, as I had very negative reactions. Having a catheter made a massive difference to me as I was in nappies until I was 14 and it stopped me from doing simple things such as having sleepovers through school. I also suffered bullying and became very miserable.
I ended up moving schools and made some really great friends. Whilst at my new school, I had my surgery and I was surrounded by supportive people and that really helped me to love myself and become proud of who I am. I suffered a lot but discovered that it’s very important to reach out if you are struggling, and to not let anybody put you down over things you can’t control. Having a disability is nothing to be ashamed of, and I wish I’d have been braver and more confident through school so I could have stood up to my bullies the way I would now.
It’s a catheter!
I want to write this post to just start to raise awareness on what a mitrofanoff is. So, what is it? Simply, a catheter through your belly button. (The catheters I use have a plastic coating to ensure minimal touching.) It’s a tunnel created from your belly button to your bladder, giving the opportunity to control bladder functions. My bladder was enlarged for this surgery using my bowel, this means I have to complete washouts morning and night using a different coated catheter. this is a saline solution flushed through a catheter into my bladder and pulled out with a syringe to help clear out any mucus that has settled in there. Usually the catheters are used and disposed of each time you have a wee, though some people may benefit from a catheter that stays in and is attached to a bag, for example someone in a wheelchair.
As my mitrofanoff has been closing up, I keep an ace stopper in my belly button, this keeps my mitrofanoff site open to ensure I can get the catheter in as and when I need it. I usually empty my bladder every 4 hours, though this is different for some people.
I simply take out my ace stopper when I’m ready to catheterise and wash it with soap and water before putting it back in and securing with a plaster. The mitrofanoff means I can only be catheterised through my belly button so, should I find myself in a situation where I am unconscious and require a catheter, I would need a medical professional to be aware of what a mitrofanoff is and how to use it, so they do not damage my body.
I would like to raise awareness of what a mitrofanoff is, so that the frustration and lack of knowledge around the subject can be controlled. It’s very important that people are aware of this, to ensure that anybody with this condition can get the correct care when needed without an issue.
For more information about mitrofanoffs visit: https://www.mitrofanoffsupport.org.uk/
About Aimee King
I’m Aimee King, I am 22 years old, I had my mitrofanoff done when I was 14 years old due to having spina bifida, so it is almost 8 years old! Having a mitrofanoff has changed my life for the better and now I am hoping to make a difference and see a lot more awareness around it!
Like this blog? Click here to read more.
Join our conversations! Click here to ask questions, find solutions or share your experience.
Explore accessible places in our review site. Click here to read or leave reviews of places that do access well!