Roughly 70,000 people in Canada and the U.S. have a stoma. Deriving from the ancient Greek word for 'opening', it is the result of either a colostomy or an ileostomy, a common operation for people who’ve suffered with bowel or vaginal cancer, Crohn’s, ulcerative colitis or incontinence. The small intestine or the colon is redirected to a small hole in the stomach (the stoma itself) from which waste can drain into a specially designed bag (a stoma bag or ostomy bag). This stops the person from needing to poo.
For many people with stomas, the operation is life-changing and even lifesaving, as conditions like Crohn’s or colitis can be debilitating. At the same time, having a stoma can be incredibly hard mentally. Psychological problems are common after stoma surgery, with body image concerns, sexual difficulties, reduced social functioning, stigmatizing attitudes and lowered self-esteem all playing a major role in an individual’s mental wellbeing.
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This is particularly true when it comes to re-engaging with a ‘normal’ life. Chronic illnesses, particularly invisible ones, are not always accommodated and there is pervasive shame and embarrassment around the gut and bowels.
While there is a growing movement on social media to celebrate bodies with ostomy bags, less is said about the mental health impact on people learning to manage a stoma.
We spoke to Millie Steptoe, 26, about her ongoing relationship with her stoma and why she wants more honesty about the mental struggles you can face when you have an ostomy bag. Not acknowledging these struggles can add another layer of shame that you aren’t always able to celebrate your life with an ostomy bag. In being more frank, we can help to alleviate not only the shame that many feel but also the shame of being ashamed.
"I was diagnosed with ulcerative colitis at 16 years old. After a GP referral I went to the gastro hospital and they started me on steroids that I was injecting into my thighs and I had iron infusions just because I was very unwell. But one day at 21 I was very, very poorly to the point where I could barely get out of bed. I still made it into work and did a full eight hours and then I almost collapsed at home. I got rushed into the hospital where they told me that all treatment had failed and I was going to have to go into emergency surgery. And then I woke up with a stoma. I didn't really know what it was so it was a very scary experience for me.
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Before the surgery I didn’t really have a life. I'm a very social person but I was going to the toilet four or five times a day – I had to stay at home and I couldn't really live my normal life so I hid away. But I had no idea what [a stoma] was before I went into surgery – I'd never googled it, nobody from the medical profession had told me about it before. I know that they don't actively push surgery because they don't want people to have this happen to them. But it would be nice for other people in my position if they could know the potentials of what the next stages could be because when they started telling me about how they're going to remove my large intestine and fit me with my small intestine on the outside of my body, I got really upset. I got to the point where I felt like I would not be classed as a human being and got into a big mental battle with myself. It was terrifying because being 21, you can't help but think, Oh my god I'm having this massive life change. They did say that it’s going to improve my quality of life but you're still changing your body, potentially forever.
I sent myself on a downward spiral for that first year adjusting to my new body. I was so used to just staying indoors and I had this weird thought that people could see my bag underneath my clothes – I was ashamed to go out. I kept saying to myself that I had to dress in really baggy, horrible clothes because I didn't want anybody to see my bag, especially if it inflated [when things pass through the stoma, the bag gets bigger]. I was telling myself that I'm not human enough to go in and socialize with other people. Which is silly! Looking back at it now I don't know why I thought that but [having a stoma] sends you onto a different mind path. It changes the structure of your day. I used to just get up, go to school or work and not have any problems but now I would wake up in the morning and sometimes my bag would have leaked in the night and I'd get really upset. I'd say to my mum that I'm not going to work today because I feel ashamed of being covered in waste.
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Past that almost yearly point – and I don't really know what made me snap out of the negative mindset – I started to go out with my friends. Instead of declining going out to dinner or going to the cinema or swimming, I actually said: 'I'm going to give it a go.' And that's when my confidence started to really build and I mentally started feeling like the old Millie again. I could see my quality of life improving.
It is difficult though, particularly at work. The other week I was at work and I could feel my bag leaking but I was in the middle of something really important. My brain was anxiously ticking over, thinking, Oh my god I've got to get off the phone to try and sort my bag, and of course it was leaking through my trousers. Luckily everyone I work with is really supportive but to me it was really embarrassing and after I cleaned up I went and sat in my car and just cried. It's traumatizing in a way.
Sometimes I have to give presentations to customers and there was one time, about three or four years ago, that I stood up in front of 40 people and my stoma bag made a really loud, almost like a farting noise. People started laughing and that was my trigger. Now every time [I have to present] I panic and I turn into a different person: my heart is racing, I feel hot and sweaty and so many things go through my mind. And that's why I really struggle with the whole anxiety side of it.
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I know it makes other people feel embarrassed but I keep saying to people to put themselves in my shoes. I'm trying to preach to people that it's actually not embarrassing anymore. It's not disgusting to have bowel problems. There's a lot of misunderstanding around the bowel, the gut and it's just the way we go to the toilet. There's nothing wrong with that because if we didn't go to the toilet, we wouldn't be alive. That's why some days I could be really happy with it. And other days I feel that sense of shame that I know I shouldn't.
On 4th January 2019 I made the decision to make my stoma permanent. The decision again made my mental health go downhill because I kept questioning if I'd made the wrong decision. I signed the paperwork but [I was thinking], Should I be making my stoma bag permanent forever? But once I had the surgery I said to myself that my stoma has given me such a good quality of life. Yes, I have some days where my stoma leaks and the noises that my stoma produces are quite embarrassing but overall I've now seen positives in it. I get to go to festivals, I get to eat whatever I want, and I feel human again. I don't feel like I'm an outsider or a different person.
I feel like a lot of people can see that there's a physical impact but people who don't have a stoma don't understand how traumatising it is having your body cut up and having a piece of equipment fitted to your body, potentially forever. That can have a huge impact on people's minds and I think it's not talked about enough. I know there's a lot of influencers on social media that promote how the body looks but nobody's actually talking about it from a mental perspective. It's always about what it looks like but they don't focus on the anxiety around it or the depression that can come with the whole experience.
My confidence has gotten a lot better because now I push on social media and try to promote to people that it's okay to have down days. Yes, I have my bad days with it but it saved my life. It took me a couple of years to get here but I can happily say now that I wouldn't trade my stoma for my old body ever because it's given me what I didn't have when I was 16."
If you or someone you know have been affected by issues covered in this piece and are looking for support and more information, you can visit Ostomy Canada Society or Crohn's and Colitis Canada. This story was originally published on Refinery29 UK.