At the age of 29 Nicola Dames faced a dilemma: have her colon removed or become infertile. She chose surgery. After the operation she thought she'd never feel sexy or feminine again, but then she discovered that what doesn't kill you really does make you stronger
IN HER job as an intensive-care nurse, Nicola Dames had done everything for her patients. There was no part of the human body that was a mystery to her; no task from which she flinched. But lying in the high-dependency unit herself after major surgery to remove her colon, she felt repulsed by her own body. She could not look at the clear stoma bag that had been fitted to collect the waste products from her digestive system. It was ugly. The nurses soothed her as once she had soothed others. "Nicola," they told her, "you don't have to look at it. You're not ready to look at it. We'll deal with it."
On the tenth day after her operation, the floodgates opened. She cried and cried, a process of grieving for the person she had left behind in the operating theatre and coming to terms with the one she now was. We are more than our bodies. But our bodies are the physical manifestation of who we are, the only concrete way we see ourselves. It was hard at the age of just 29, and only one year married, to know that the normally concealed processes of digestion and excretion would now be highly visible. Her husband Simon had brought in some music for her to listen to. She thinks maybe James Blunt was enough to give anyone a relapse but by the time she reached 'You're Beautiful' she was inconsolable. Look at her! She would never be beautiful again. She would never wear jeans again, never be sexy again.
There's a science to sex. Sexuality is programmed in the human hard drive and some of our responses are instinctive, some are learned, some are spontaneous and some controlled. The interesting question is how much love can influence instinctive sexual attraction. If a partner's face is destroyed by acid, if their body is horrifically burned in a fire, does love alone continue to fuel physical desire? Or what about less extreme cases – excessive weight gain, for example? There are, in life, certain things we say because we want them to be true rather than because they are. For instance, 'appearances don't matter'. For instance, 'I'll love you no matter what'. Most of us don't have to prove it.
ONE CORNER OF the bright, spacious sitting-room of Nicola Dames's tenement flat in Glasgow is given over to lingerie samples. Warm, dusky pink satin and midnight black lace, pretty flower motifs and thin strands of delicate ribbon. Nicola had always loved lingerie. As a student, her flatmates thought she was an underwear freak. It was a mortal sin not to match and she folded it neatly into separate knicker and bra drawers. But when she returned from hospital, her collection became redundant. Her stoma bag was visible with all of her existing underwear. "You could see the bag at the top or the bottom so it wasn't doing anything for my image or self-confidence and it certainly didn't make me feel sexy or attractive."
Her colon had been removed; her femininity hadn't. She designed knickers with a pouch that would conceal the bags and set up her own internet company, Vanilla Blush, to market them.
When she was a two-year-old growing up in Dublin, Nicola had eaten contaminated ice-cream and her parents were told she would die. But she survived and had no health problems until 2001, when she developed ulcerative colitis, a condition that causes painful inflammation and ulceration of the colon. The inflammation makes the colon empty regularly, causing diarrhoea, and in severe cases the colon simply has to be partially removed (colostomy), or completely removed (ileostomy), and an artificial opening created in the stomach for waste to pass out into a disposable bag.
A bad haircut. A skin rash. A black eye. There are so many superficial changes to the body that affect how we see ourselves. At least they are temporary. Colon removal is life-saving, but it can still feel like body vandalism. Yet Nicola Dames is determinedly positive. She's blond, glamorous and exudes energy. The night before her operation she was thinking up schemes for jazzing up the flesh-coloured stoma bags, injecting a little colour and vibrancy into them. That's her personality. Still, she admits her sense of self took a battering, though to tell the truth it had been worse before the operation.
"When it came to getting married, I had to change the church venue twice because there was no toilet in the church and with bowel disease you have chronic, constant urgency. If you don't go you will be incontinent. In the five years I had the condition, I probably had about 10 or 15 accidents. When you're 25 years of age and you can't make it to the toilet and you have poo everywhere, it is the most degrading, humiliating and upsetting thing you will ever go through. Just awful."
Her consultant offered her a choice. "He said you can either spend the rest of your life on really high-dose steroids and drugs called immuno-suppressants, which would probably have meant I would never get pregnant, or I could have the operation. That's what I opted for and what Simon opted for because our quality of life was diminishing. I couldn't go anywhere. It was very difficult for Simon as well because he would panic if he knew I needed the loo and we'd have to come back and our day would be ruined.
"I'd always have to bring a change of clothes and a toilet roll. And you can imagine some of the toilets. Some places won't let you in unless you're a customer. Your option is to hand them a little card that says, 'This person needs the toilet urgently. Do not ask any questions.' How embarrassing is that? No way. I told people I was pregnant for two years."
So in terms of body image, she was already struggling. "I think I had lost my sense of self and my sense of femininity and sexiness when I was incontinent. It's very difficult to keep up the bravado of, yes, I like fashion, because I might just buy a pair of trousers and guess what? I might just be incontinent in them. And guess what? I might have to put them in the bin because they're so destroyed. So I think I dealt with an awful lot of body-image issues before I even had surgery."
Nicola is both honest and dignified discussing things which are normally taboo. There is a bag tucked into the pouch of her underwear designs to show how it fits. When I ask how the bag attaches to the body, she stands up. Do I mind looking? Not at all. Discreetly, she folds her top over. The bag is held to the body with what looks like little more than a large elastoplast. It's surprising how unobtrusive – how unfrightening – the whole thing is.
Her husband had a similar reaction. He's squeamish, Simon. After the operation he said he didn't want to see the wound without the bag over it. When you're ready, let me know, Nicola told him. Months passed. One day he knocked on the bathroom door. He was ready. "I took off the bag and showed him," she says. "It's just like a strawberry, that's exactly what it looks like." Simon had laughed. "Is that it?" he said. He didn't know why it had taken him so long.
SIMON DAMES enters a Glasgow hotel having come from work. Smart shirt and tie, neatly slicked-back hair, polished shoes. He confesses to a certain nervousness. Not that the press is any mystery because he works as a media officer with the Catholic Church in Scotland. But this is personal. He and Nicola have agreed to be interviewed separately, to allow different nuances of the story to emerge. Meeting them individually, you can still see how they complement one another. Simon, as you might expect from someone in his line of work, is contemplative, comfortable with abstract concepts. Nicola is dynamic and deals in concretes.
They met in an Irish nightclub in London, Simon says with a smile. He bumped into her and told her how wonderful she looked and she spent the next couple of hours thinking the stranger who had spoken to her was someone else and looking across flirtatiously at the wrong man. "So I came close to losing her right from the start," he jokes.
But you sense the fear of impending loss has been a significant influence in this relationship. Simon talks of the many emergency admissions Nicola endured in those years before her operation. Once she was back home in Dublin visiting when her father phoned him. A typical male conversation, he says. "How are things?" Simon had asked. "Yeah, great," Nicola's father had replied. Well, no, actually, they weren't. Nicola had been admitted to hospital. Simon flew over immediately. He is a football fanatic, remembers events by whatever match was being played at the time. "It was 2003," he says, "because Celtic beat Liverpool in the Uefa Cup." He watched it on television in the hospital.
Those times were emotionally exhausting. So when it came to having the operation, it felt as though there wasn't much choice left. No choice didn't mean no issues, though. "Nicola would agree it's not the most romantic thing to premeditate. You'd be lying to say it wouldn't come up as an issue and couldn't be a serious issue. Only a fool could say that." Was he then secretly worried about how he might react to Nicola's disfigurement? "Yes," he admits. "All your talk about recognising the person for who they are… I was now going to have to put my money where my mouth was."
He knew the key to coping well with it was in the mind. "We always knew the psychology side was the biggest obstacle we had to confront. It was always in our conversation. How would we respond as a married couple? I think, ironically, recognising it could be a major problem has made it less of one. I can put my hand on the Bible and say the only time it was a problem was Nicola's first night home from hospital. We were watching TV and her bag was hanging over her trousers and when I made a complaint, she said, 'You're going to have to get used to it.' And that was that. Since then it's not been an issue."
Perhaps his job helps, because clearly he has thought about the relationship between spirit and body. The night he met Nicola in that London club, his brain said, wow. This was physical attraction. But… he struggles to try to describe why that wasn't the whole story. Put it like this. At the time, he was a teacher in London and one of his duties was teaching sex education to teenage boys. He would ask them to name something they loved. Usually, it would be a football club. They'd talk about the first game they went to see with their dad, or the first important memory of a really great match. And he'd point out that what they loved was more than the physical game. There was something about emotional bonding in there.
He would make the boys laugh then. What, he would ask, did their mums see when they watched football? Eleven men kicking a ball, they'd reply. And what was wrong with their mums? They were missing the point. "That's how I'd introduce sex education. If you just look at women's breasts and bums you're missing the point. If you spend years thinking that's what it's about you're like one of those mothers thinking, 'Why are those men kicking a bag of air in a lot of grass?' With Nicola, I knew this was more than just phwoar.
"You're only young for a short time. Nicola is a beautiful woman, absolutely gorgeous, but I'd been preparing myself for the days when we're 80 and I've got no teeth and she's telling me to put the kettle on. If you don't prepare for that reality, you're going to find it tough to cope. If you prepare for the reality that the body disintegrates, then – I'm not saying it's not an issue when someone gets a stoma, but it probably makes it easier to cope with. Cope is the wrong word – makes it easier to put in its place."
But do we actually have any control over how we respond physically and emotionally? Maybe, he says, it's more about recognising instincts than controlling them. "I think we do damage when we pretend those instincts aren't there. That's when instincts get misdirected. There will be a bodily part of me that will go, 'I don't want a bag to be there,' but human beings are not just physical creatures. We are spiritual and intellectual. So you become aware that there is a part of you that will react negatively physically, but the intellectual, spiritual part of recognising people for who they are doesn't just override it, it kind of washes it away. It would be like a mother looking at a child and saying, 'God, you have a slanty eye there.'"
It's a good analogy. Love is often fiercely protective and vulnerability can intensify rather than weaken the attachment. "The irony is that we need suffering or pain because it's through weaknesses that we are open to each other and move closer," he says. "The people who repel us most are the arrogant, the self-contained, the islands, the spoilt, the selfish – they are the ones who are repellent, not the vulnerable. I think that fits in with a human truth."
But here's the crunch question. How much of what he says is intellectual, and therefore what he thinks he ought to say, and how much is instinctive and emotionally honest? He breathes in. "Did you notice that deeper breath there?" he says, and laughs. He thinks for a moment. "It's like asking why do you like jam. I just do. Ultimately, you can't define love and ultimately, no matter what, you get to the stage where you say, 'It just is.' You might explain to me that an orange is sweet but when I say 'What's sweet?' you have to say sweet is sweet. I think I am being honest with myself, and with you, when I say my response is not intellectual. Maybe through the intellect I can reflect and understand that response. But I don't think it originates from the intellect. I think it originates from the soul."
BACK AT THE flat there is a photograph of Nicola and Simon at their wedding, dancing. Nicola wears a full-length dress and little fur stole and looks like an old-style Hollywood starlet in evening dress, a Jean Harlow, a Marilyn Monroe. You can see why she fought for herself. But she fought for others too. Like her, her three lingerie models all had ileostomies and she counselled them before their surgery. She emphasised not that they would lose part of their body, but that they would gain a life.
Natalie Doyle, from Berkshire, works for a medical recruitment company. She didn't have to think twice when Nicola asked her to model. "It's strange but before surgery I used to feel I had to tone up to get in a bikini. Surgery gave me more confidence and I don't know why. I don't know if it's getting a second chance at life and being happier to be alive and ready to embrace things a bit more. If that includes modelling underwear, so be it."
Natalie calls her stoma Vince, because she's a fan of actor Vince Vaughn. Vince has been playing up, she'll tell Nicola. It stems from some advice a nurse gave her, about personalising what had happened, laughing at it, making it an extension of herself. "It's another part of me," Natalie says. Still, it's a part she'd prefer not to show in the gym changing room. "I'm not ashamed of it. I'd be dead without it. But with Nicola's underwear nobody knows. And it's comfortable and sexy and gorgeous in its own right. Even if I didn't have a stoma, I'd love it."
There are 120,000 people in the UK with this condition, five million worldwide. Potentially, that's a global business. Nicola has translated her website into Spanish and French and the goods can be ordered in euros. She currently gets the lingerie made in Lithuania (there is only one underwear manufacturing company left in the UK) but she wants to increase her ranges to include children, men and swimwear. She has taken out design protection on her products for the 27 member states of the EU and hopes to do the same in America. But it costs a fortune. She puts the charges on her credit card and pays it up in instalments. And the business has to grow slowly because she doesn't have the capital to invest in large quantities of stock.
She has approached Scottish business giants such as Michelle Mone of Ultimo, Sir Tom Hunter and Sir Tom Farmer for advice and assistance. If she has to, she'll take out a loan and do it all herself. "If it all goes belly up in the morning, I am still a nurse and can be employed in 24 hours. I don't worry about things," she says.
Vanilla Blush is not the only birthing process that is going on in the Dames household. Nicola had two miscarriages before her surgery but she's now 30 weeks pregnant. She and Simon were in tears at the first scan of the baby they thought they would never have. "It's a totally amazing feeling when you're overjoyed about a pregnancy."
Somewhere inside her, she never really doubted Simon's reaction to her surgery. "I have never questioned if he would love me any less because I have a bag," she says. "I think a solid relationship will stand the trauma of any event." They probably have fewer tiffs, she says, without the stress of all that running round looking for toilets. And perhaps it's true that sexiness is a switch in the brain as much as the body. "I can stand in front of the mirror now," she says, "and, being totally 100% honest with you, I don't see my bag any more. I just don't see it."
• For more information about ileostomy, see www.iasupport.org
• Vanilla Blush lingerie can be ordered online at www.vblush.com