08 May, 2021
Ovarian cancer. Surgery. Chemotherapy. Hair loss. Wheelchair. Intensive care. Terminal. Incurable. Remission. So many words and phrases have entered my world in the last year. Some have been easier to deal with than others. But one word stands out because I’d never heard it before… Colostomy.
I didn’t even know what a colostomy was… no one in my life had ever mentioned this word before. After some questioning and research, I discovered ‘colostomy’ meant life changing surgery. I was so confused. Why would I need this surgery? I didn’t have bowel cancer. I had ovarian cancer…
Turns out, however, that ovarian cancer doesn’t much like to hang around in just the ovaries. It likes to spread to other organs and, in my case, it was now sitting on the surface of my bowel and would need cutting away.
In the days that followed my approval for this surgery I had many appointments seeing stoma nurses. I was handed leaflets I couldn’t bring myself to read. I had conversations I didn’t listen to. My abdomen was marked for the ‘exit site’. I was in complete denial. This couldn’t be happening. Hadn’t cancer already done enough?
In the days following surgery I faced an 18–inch scar. Drain sites. Drips. Syringe drivers AND a stoma…another alien addition to my ever–changing body. As the days turned to weeks slowly these additions diminished. The drains were removed. The scars started to heal. The drips were wheeled away. But one thing remained. The colostomy wasn’t going anywhere. It was a permanent feature.
It was hard to come to terms with. It felt like the final shred of dignity I had left had been removed. I no longer had control over my bodily functions. In a ‘normal’ body you are able to control when you poo using the muscles in your anus. Your colon, however, doesn’t have muscles that you can consciously control. So if you have a stoma your body excretes waste whenever it wants. Any time. Any place. No warning. No control. Great!
So I learned that I’d now need to carry spare ‘colostomy bags’ with me wherever I went so that if my bag filled I could change it. I’d also have to carry wipes and bags to dispose the waste in. No more small handbag for me!
I was given a special card stating that I had a medical condition that allowed me to access any toilet anywhere – one small perk.
And also a special ‘RADAR key’ that allowed me to unlock any public toilet 24 hours a day 7 days a week – okay another small perk.
I was taught that I could no longer wear button up jeans as they’d cut off the bag and prevent it from working. Instead I would have to wear high-waisted jeans or jeggings. I also couldn’t wear tight fitting dresses. Wait, you mean I have an excuse to buy a whole new wardrobe. No questions asked. Things were starting to look up!
Whilst it was hard to come to terms with at first, I began to realise that this was a result of life enhancing surgery. Would I, if given the chance, turn back time and say “no wait actually could you just leave that cancer in my bowel I’d rather not have a stoma”? Hell no!
Of course there are still hard times! Like when I go to use a disabled toilet and I’m judged by observers because I don’t ‘look’ disabled. Or when I use a toilet and there is no bin. No one wants a bag of poo left on the toilet floor!
Having an upset tummy is the worst! Usually when you have an upset tummy you give yourself enough time (hopefully) to get to a toilet. Not with a stoma. With no warning – that waste is making an exit whether you like it or not! If your bag sticks in place great. If not, then all hell is breaking loose wherever you are! I’m not going to lie – I’ve had a few what one of my nurses affectionately refers to as a ‘Code 20’ incidents. I’ve learned that having a dark sense of humour helps.
What also helps is people sharing their story about their colostomies. Did you know 1 in 500* people in the UK have a stoma? And not just because of cancer. Sometimes because of Crohn’s disease or even from child birth!
With this in mind I’m pretty sure you know someone else with a colostomy bag! But there is still so much stigma attached to discussing ‘poo’.
So what can we do?
We can celebrate the differences in our bodies.
We can stop being embarrassed by our bodies and what they do.
We can stop body shaming.
And, most importantly, we can stop taking everything so seriously… after all everybody poos just some of us are lucky enough to be able to do it ‘on the go’. See, I told you a sense of humour helps!
Each year 7,400 women are diagnosed with ovarian cancer in the UK and it kills 11 women every day. Make sure you know the symptoms:
– Bloated tummy
– Always feeling full
– Tummy pain
– Needing to wee more
For more information visit: https://targetovariancancer.org.uk/about-ovarian-cancer/symptoms or https://www.ovacome.org.uk/ For more information on Ovarian Cancer and stoma’s check out this brochure: https://www.colostomyuk.org/ovarian-cancer-and-stomas/
*Current research suggests 1 in 450 people have a stoma.