Smash Social Exclusion "If I ask for a different type of chair, people think I’m being a diva" - EXCLUSIVE - Tracey Emin on Living with a Stoma

Most people have heard of Tracey Emin, the high profile outspoken artist famous for installations such As Hotel International, and Everyone I ever slept with.

But perhaps not all our readers will be aware that Tracey has had a stoma since 2020. Tracey had radical surgery to treat squamous cancer, which led to her having a urostomy.

How the interview came about, who conducted it and how the questions we asked served as a trigger for Tracey to talk about her experience of being ill and life with a stoma.

As you will see from what follows the trials and tribulations of having a stoma are the same, regardless of who you are, as are the needs. Like everyone else, Tracey felt scared and initially isolated.

Tell us how you ended up with a urostomy?

Well, it’s a long story, I had a kidney reflux in hospital when I had an appendix operation and after the kidney reflux, my bladder wouldn’t work, but my bladder wasn’t working anyway without me knowing really. Then I catheterized, self-catheterized for five years believe it or not and during that time I went to lots of urologists, and they all said that I had Fowler’s syndrome (urinary retention). Basically, Fowler’s syndrome means: ‘we don’t really know what’s wrong with you’. Because of my high profile and all these sorts of things, people were saying things like: ‘oh well you’re obviously shy to go to the loo in public’, ‘you’re under a lot of pressure’, ‘maybe it’s the stress of your lifestyle’ and all this kind of crap. But the whole time I was building up to full blown squamous cell cancer which is really hard to detect because it’s not like a tumor, it’s almost like millions of blisters which all connect, and that’s cancer and you can’t stop it. That’s why I had to have the really radical surgery and have everything removed: my bladder, a full hysterectomy, my ovaries, my lymph nodes, my urethra, part of my vagina and part of my intestine to make the stoma.

*See bottom of page for additional point

How long ago was that?

Three years ago. They did the biopsy on 5 July 2020 and then it was an emergency surgery on the 18 July. So, I had hardly any time to get my head around it or think about it, I just had to do it because the cancer was so bad it was starting to push outside the wall of my bladder.

That sounds like it was a big and sudden adjustment.

It’s quite funny about the adjustment, it’s really bad, everyone’s suffering and the worst thing about finding out you have cancer is that it hits you and you’re scared. You don’t know if you’re gonna die, you don’t know if you’re gonna live. Everyone who is diagnosed with cancer has to go through that.

What were the emotional and physical obstacles you’ve had to overcome that other people with a stoma might relate to?

Well, when I self-catheterized I kept it a secret. And the nurse who had advised me, advised me really wrongly. She told me not to tell anyone. She told me it would get in the newspapers and all this kind of stuff. And its like, when have I ever kept a secret about myself? I haven’t. She intimidated me and made me feel it was wrong, and I stupidly listened. I don’t know why. I shouldn’t have.

With the urostomy I then decided there was no way I was going to keep it a secret. Because it’s hard enough dealing with the f*cking bag, let alone dealing with the secret. Because if you try to cover it up that you’ve got a urostomy… I couldn’t understand why you needed to wear really tight clothes all the time or big knickers. The reason why is to flatten your bag. It’s not for any other reason (unless you need the support if you don’t have the muscle strength). I don’t need to hide it or cover it up. I’ve got a urostomy bag. I have to deal with it. I have to live with it, I have accidents. I was in Chanel and my bag burst and it went all over the floor and my clothes. Luckily, I wasn’t trying anything on and hadn’t kept it a secret, because if I had it would’ve been a million times worse for me.

I realised the more open you are about it, the easier it is to deal with things that happen. And obviously I push in front for any queues for the loo, I have a card. I was in Selfridges a month ago, I said: ‘please can I push in’ and people got really stroppy. And when I came out of the loo everyone was smiling because they realized it was me. And if you have a urostomy, you’re so fast to go in and out to drain your bag that it doesn’t really hurt anyone. My other option is to go in a sink or down a drain, which I think people would find far worse than me pushing.

Would you say that is the biggest perception that needs to be changed about stomas in society?

Well, I think there’s lots of things, I’m only three years in but I’ve been talking to people that have had stomas for 25, 30 years. Some of them aren’t aware of all the new things that have happened. They’re not aware of all the new bags, how simple things have become, because they’re still using the same bags, the same methods as they have been for decades. In some ways, being a new ostomate is good because you’re aware of everything that’s new, but on the other hand, being a veteran, you’d know lots of shortcuts, they know lots of things you can do when things happen.

I think the main thing with society is because its hidden, people don’t realise the disability we have. For example, I can’t stand up for a really long time. I get unbelievable back ache. At the start of the day, my bag is really good, I can go a few hours without emptying it. But by the end of the day, I have to go every ten minutes.

If someone invites me to a dinner for example, don’t expect me to sit miles away from the loo. Don’t expect me not to have my night bag with me. Don’t expect me to sit on a bench, or on a hard back chair because I need to stretch my stomach. There’s all these kinds of things that people just aren’t aware of. If I ask for a different type of chair, people think I’m being a diva. Or if I’m out somewhere and have to sit down, people think I’m being a diva but I’m not. As well, if I go into a disabled loo, people think I’m putting my makeup on, when actually I’m changing my bag or I’m having a leak, or something happens, it might take me a while. Another thing, why aren’t there more sinks inside lavatories? Because I need a sink. I have to have a sink. In Japan they have ostomy loos, where you can just rush in to change, not necessarily a loo, just a facility.

In your experience, is there anything you feel could be improved in the care people receive after stoma surgery?

Luckily for me, when I was in hospital I had a really brilliant nurse, and she said to me: ‘the first thing you do when you get home is you get rid of the nightstand.’ ‘Put it [the night bag] in a bowl by the bed and when you get used to it you put it in the bed. It’ll wake you up when it leaks but make it part of you.’ And that was the best advice I got: to become one with the night bag. Otherwise, you never sleep. Also, having a urostomy, you have to empty your bag all the time, that’s the thing. Sometimes, if my bag leaks at night, and my f*cking bed’s soaking wet and stuff like that, I feel really demoralised. And sometimes I’ll feel sorry for myself. I hate it. It’s quite nice to hear what other people have gone through, people’s sense of humour with it, knowing there’s support there. I don’t want to feel like I’m on my own with this.

What would your message be to someone facing stoma surgery?

Don’t be afraid. When I was first told, I thought: ‘no, no, no, no, is there anything else I can do? I’ll do it’ and he said: ‘there’s one other option’ and he said it was death. When you come round from that surgery and you’re still alive, you suddenly realise how brilliant it is to have a bag, it doesn’t matter. Life is giant, the bag is quite small, you will have to find ways to deal with it and live but saying that, I think more awareness for people would be a really good thing. I don’t want sympathy, I just want practicality when I’m out and about. I wish the companies would come up with an opaque tube for the night bag. I know why they can’t, but maybe one that had some visible parts, but the rest is a dark colour or black so when I go out no one will see urine going through the tube. I hide it quite well. But there’s no way to hide it unless I don’t drink all day but then you don’t feel well because you’re dehydrated. I wish I had a small stoma bag which connects to the night bag, so I don’t have to feel as though I have two bags on me.

Did you experience any kind of artistic block after your diagnosis and/or surgery and has it changed the way you approach your art?

I was so ill with my cancer, and then after the surgery you know I was bed bound and having physiotherapy and everything. I was in a really bad way for about six months, hobbling around and everything so I didn’t really start painting for about a year afterwards, because I couldn’t really move that well. Now I’m swimming again, doing lots of things, being physical but my body’s really gone through a big change. I think if I was in my twenties and had the surgery, I’d be able to fight a lot of the physical effects but I’m much older.

The best thing I did, 3 days after the surgery I was up, walking around the ward going up stairs, I was off my head on morphine anyway. Otherwise, you’ll end up with a hunchback on top of everything else, so you’ve just got to start walking straight away. That’s the most important thing. Otherwise, your core, all the surgery inside, groups together all the scar tissue, and then you can’t stand upright.

EXTRA POINTS AFTER MAIN QUESTIONS

*Based on her own experience with receiving her diagnosis, Tracey encourages people (when possible) to always get a second opinion on the symptoms they are experiencing, particularly if you are not urinating.

If you’d like to join our Stoma Friendly toilets campaign please email getinvolved@colostomyuk.org with your address and we’ll send you our campaign pack in the post.

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