It’s Ostomy Awareness Day today, which as the name suggests is a day to raise awareness of people living with a stoma. A few years ago, if you’d have asked me what a stoma was I’d have given you a blank look before taking an educated guess and saying it was something to do with the stomach. Likewise if you’d asked me what an ostomate was I’d have given you a blank look until you’d taken pity on me and finally told me what it meant. These words weren’t part of my vocabulary, and I had no reason for them to be.
This month marks two years since my mum was given the news that she had cancer. It came out of the blue, particularly as she hadn’t had any of the symptoms associated with it, and the diagnosis turned our world upside down. Thankfully she realised that something didn’t feel quite right and decided to get it checked out with the doctor – her actions and the willingness of her doctor to investigate led to an early diagnosis.
The day she was diagnosed was the first time I’d really heard about stomas. For anyone who doesn’t, a stoma is a surgically-created opening in the abdomen that allows waste from the intestine or urinary tract to pass. There are three main types: a colostomy (an opening in the large bowel), ileostomy (an opening in the small bowel) and urostomy (a diversion from the bladder). My mum’s doctor explained that the usual pathway for bowel cancer patients was radiotherapy, an operation to create a stoma and then in some cases chemotherapy. Because they’d caught her cancer early my mum was eligible for a medical trial, and when she had a complete response to radiotherapy she was able to postpone her operation and skip ahead to follow-up chemo. Both the radiotherapy and chemo were absolutely horrid but they’d done their job.
But of course live never goes to plan and earlier this year in true 2020 style my mum’s pain returned. After being told by her oncologist it was likely due to scar tissue, we were called back a few weeks later to be told that the cancer had possibly returned and she would need an operation to create a stoma…just as Covid-19 was reaching its peak. And so, in March, just as the UK went into lockdown, my mum had what medical experts call “an abdominal-perineal resection” and what others call “a Barbie Butt” (I’m pretty sure that doesn’t need explaining). Essentially she has a permanent colostomy which diverts the flow of body waste (poo) out of her stomach and into a colostomy bag. It’s a huge operation with a long recovery time, and six months later my mum is still in a lot of pain. And of course it’s not just the pain she’s having to deal with.
Having a stoma is a life-changing experience – it’s not just the physical changes in your body you have to deal with but also the psychological impact. My mum is a fairly recent ostomate in the grand scheme of things and is still trying to get her head around it all. The operation itself has definitely knocked her confidence, and of course this hasn’t been helped by the lockdown because she doesn’t go out as much as she used to.
My mum is hugely conscious of her bag, and was initially so embarrassed by the idea of a stoma that before her operation she wasn’t planning on telling anyone she was having it done, until I pointed out that they’d notice if she suddenly disappeared for six months (little did I know about the whole lockdown thing). Thankfully her stoma nurse gave her a helpful piece of advice shortly after her operation: that no matter what happens, she has to try and laugh about it. Cancer really isn’t funny at all but, inspired by a wonderful friend of mine who lost her life to ovarian cancer, throughout my mum and I have tried to make light of the situation where we can, and we’re trying to do the same with her stoma. If it makes a loud, embarrassing noise, we laugh because it’s funny. If she has a horrible leak and just wants to cry, we joke about it, even though deep down I know she feels horrible about it and I desperately wish I could make things better for her. Some days if she’s feeling particularly down I read her other ostomates’ stories – both the good and bad – to cheer her up, including stories about peas and rhubarb and tomato soup. We joke that her stoma has its own personality (many ostomates name their stomas, and she’s currently deciding on one for hers that isn’t offensive) and some days it’s particularly argumentative; it’s a pain at times and she would much rather not have it but it’s a part of her and, more importantly, it’s saved her life.
There are more than 160,000 ostomates living in the UK, and there are many reasons why people young and old end up having stomas: cancer, diverticulitis, colitis, Crohn’s disease, injuries and even childbirth. Despite there being thousands of people with stomas, it’s something that’s not really talked about in society, and you’d be surprised how many people you know who actually have stomas themselves. Thankfully organisations like Colostomy UK are trying to break the stigma surrounding living with a stoma. Many people don’t realise that ostomates live normal lives: my mum is lucky, with her stoma she can eat everything she did before the operation; and when things are back to normal she’ll be able to go out and do the things she used to, and I’m sure she’ll gain in confidence the more she goes out and mixes with people. Her friends are incredibly supportive and couldn’t care less whether she has a colostomy bag or not. After all she’s still the same person, she just saves on toilet roll.
What I’ve learned most over the past six months, other than the fact stomas are incredibly fascinating and medical science is wonderful, is that the stoma community is amazing. Ostomates are brilliant: they’re strong, wise and they have a great sense of humour. My mum’s stoma nurses are wonderful wonderful people (I’m actually considering asking one to adopt me because she’s so lovely), and they really help in allaying any worries and fears, but they don’t have stomas themselves. That’s why I’m hugely grateful to Colostomy UK, not only for its work in trying to empower people with stomas, but also for the support it offers ostomates (their 24/7 helpline is a god send). I’m also grateful to the ostomate community for being so welcoming and so helpful when we’ve had questions about random pains and leaks and infections. They’re always on hand to give tips and advice and virtual hugs when we need them.
I know it’s very easy for me to talk about stomas when I don’t have one myself, but I think it’s extremely important to try and raise awareness of them and to show ostomates that they have nothing to be ashamed about. In today’s society too many of us are too quick to judge, but the next time you see someone younger using a disabled toilet or perhaps hear a farting noise from the person sitting next to you, think twice before commenting and be kind. Stomas are nothing to be ashamed about; they’re life-savers, and I’m grateful that my mum’s, though temperamental at times, is keeping her alive.
For more information on Colostomy UK visit https://www.colostomyuk.org
Images courtesy of Colostomy UK