When I was in my third year of university I bought some pre-cooked chicken from a supermarket and I contracted something called Campylobacteriosis. A few months down the line my bladder and bowel failed to function like they did before the food poisoning.
It’s now ten years later and I have two stoma bags, Bob and Squirt. For those that don’t know, a stoma bag sits on the outside of the body and, because the bladder or bowel (in my case, both) aren’t able to perform their usual function, any waste is diverted to these bags, which need regular emptying.
Admittedly, it’s not what I had pictured for my life when I was a student, but having a urostomy (stoma for urine) formed became the best thing that could have happened to me. For seven years I had a supra pubic catheter (SPC) which is a tube that is inserted into the gap of the supra-pubic bone, and goes directly into your bladder where urine is then collected into a bag on your leg. It was the worst time in my life.
I struggled to function and had horrific spasms that felt like my bladder was giving birth to my catheter numerous times a day. I lost all hope, and this was a really dark time. I felt so alone, like I was the only young person in the world that went through this. All I desperately wanted was to speak to another person who had a long-term catheter and ‘got it’.
Compared to alternatives like SPC, stomas aren’t that bad. Now that I have 2 stomas, I am a part of a community and have numerous friends who have 1 or 2 stomas like me. With them I can seek my identity whilst they challenge my thinking and encourage me to be more active. This identification has helped me push myself and become more positive.
Now I enjoy my life to the full with my 2 buddies (my stomas) and have done a lot of self-development myself so now I am in the position to give back and help others.
Urology is the area of medicine that covers bladders, kidneys, prostates, and male reproductive organs. I’ve had quite a bit of experience with the urology world over the years and I’ve learnt that there are still awful taboos surrounding urology disease.
My experience of having a catheter was physically awful, but it was made all the worse because no one was talking about it. It was very hush hush. Back then there was no way I could have put a picture on Facebook with my leg bag on show. I look back and wish I had posted something, because maybe that post would have helped someone else and encouraged them to share their story.
This is typical of the taboo surrounding urology disease. Catheters are quite common, for numerous reasons and they can be difficult at first to adjust to.
When I first had a catheter it was a self-catheter and no one had the time to show me how to use it so I was given the box and told to read the instructions and try it out at home.I found myself fighting with the toilet seat and mirror to get myself into the right position and locate where to catheterise. I had to do this numerous times a day while trying to work and still suffering from the pain, retention, and clamping. During lunch time I frantically ran to the urology department of the hospital that I worked in for the nurse to catheterise me.
That whole experience would have been so much easier to cope with had I known I wasn’t the only one. No doubt the same is true with other urology diseases, but no one wants to talk about incontinence, about male infertility, or erectile dysfunction.
It’s not great, but it got a lot better when I realised I didn’t have to be embarrassed and started to embrace what was happening. Talking about the problem made it better and having people listen was a crucial part of that process.
September is Urology Awareness Month. This is as good a time as any for people with urology disease to start speaking up and for all of us to listen and to listen well. I’ll be getting involved using #urologyawareness. If you feel able, please join me!
Acceptance takes time and does not happen overnight. However, I found when I opened up publically about my disease and the fact I have 2 stomas it helped me so much in my acceptance. This may not be for everybody, and you may not be ready to shout to the world about how you have a urological disease or have to use catheters but one day you may be ready to help raise awareness, and on that day you may never know who you may benefit by sharing your story…
You can follow Rachel's story on Facebook, Twitter, Instagram, and her blog.
On 14 September 2018, Rachel won the Postive Role Model for Disability Award at the National Disability Awards.
