“I’ve Had Lots Of Positive Experiences”: Women On Sex & Dating With A Stoma

Twenty-five-year-old Tilly King is on Tinder, Bumble and Hinge — “the ‘toxic trio’,” she jokes. One of her Hinge prompts is “What’s the most spontaneous thing you’ve ever done?” to which she answers, “I got rid of my large intestine” — a profile feature that usually brings any subsequent conversation onto her stoma.

“A stoma is an opening on the wall of your tummy,” says Grace Baird, a Crohn’s & Colitis UK IBD nurse specialist. “This is created during a surgical procedure to connect your bowel to the outside of your tummy. [It] can be necessary for patients who have severe inflammation in the bowel that cannot be helped by medication, complications such as tears or blockages, or cancer.” A bag is then placed over the stoma, which collects waste and is changed regularly.

If you’ve recently had stoma surgery and are looking to date, you might — understandably — be caught in a maelstrom of apprehension, nerves and confusion. “Having a stoma created alters the way your body looks, works and feels,” Baird explains. “This can be a positive change, especially if the surgery has alleviated difficult symptoms of IBD. Nevertheless, this can also be daunting and can take time to come to terms with, particularly if surgery has been performed in urgent or emergency situations.

“Navigating a change to your body image can be a difficult journey and this can make the idea of dating somebody new daunting, too,” Baird continues.

Baird’s right: Dating could be disconcerting in these circumstances, because it’s not just a question of physical bodily changes. “You may not be sure what to tell potential partners about your situation or how much is appropriate to disclose,” explains Relate-trained sex and relationship therapist Rhian Kivits. “You may worry that offering too much information will be daunting to them, or offering too little would mean you’re hiding something important about yourself.

“It’s natural to have fears about how potential partners may react,” Kivits continues. “You may also be unsure how to manage physical intimacy when the time comes. All this could make you feel anxious about the idea of dating.”

King had her first surgery in 2020, after enduring ulcerative colitis for years. A second surgery in 2021 made her stoma permanent. She was in a relationship just before her first surgery, and went into another relationship just after. “He actually came to visit me while I was in hospital,” she says. That relationship lasted around two and a half years. She’s been single since it ended.

As Kivits alluded to, there may be different anxieties attached to dating with a stoma, before sex becomes a physical reality. The initial “talking stage” (via dating apps, text or in person) and going on face-to-face dates have their own concerns, which do overlap with feelings about sex and other physical intimacies, but are nevertheless distinct. 

Broadly speaking, King’s subsequent experience of dating has been pretty positive. “It’s been quite easy to talk about [my stoma]. A lot of the time, [men will] joke along with me [about it], which is great,” she says.

Lizzy Merifield is 34 and her experience of dating with a stoma has been similar to King’s. She was admitted to hospital for a permanent stoma during lockdown, after living with Crohn’s disease for years. Like King, she hasn’t encountered many issues on the dating scene. “I’ve had lots of positive experiences; most people aren’t fazed by it at all,” she says.

Merifield does have one rule: She never gives out her social media handles to potential matches. “I end up having to say I don’t have [social media], as I don’t want someone knowing about my stoma before I’ve even met them,” she explains. Merifield’s wariness is understandable; King’s been ghosted several times after someone she’s matched with on a dating app has started following her on Instagram. “Like, we’ve been talking loads on dating apps, I think it’s going really well, they follow me on Instagram — that’s it. No reply.”

King’s not too bothered by this lamentable behaviour, though. “It’s easy to think, Was it because of my stoma? Does it make them uncomfortable? But what if it does? I’ve been through a lot; I don’t really want a man [who’s] got such a sheltered life that he finds a stoma weird.” Amen to that, but you may be asking the question: If not via social media, as is Merifield’s policy, when (and how) do you bring up your stoma with someone you want to date?

You could opt for a Hinge profile prompt, like King, but as Kivits says, “[It’s] important to remember that it is up to you to decide how much personal information you feel comfortable disclosing to other people. Some people may feel that they want to address the topic early on in the dating process, whereas others may prefer to wait.”

“I find trying to ease it into the conversation in a natural way helps,” says Merifield, who usually waits until she’s been on at least three dates with someone. “I’ll try to mention it by saying something like, ‘I can’t eat at that restaurant, I avoid spicy food [because] I’ve got Crohn’s.’ Then the person will usually ask me a bit more.”

Of course, it could be spontaneous, too. “I have had a one-night stand and I just mentioned [my stoma] to them before we booked the taxi home, to be sure they were comfortable,” Merifield adds — which brings us on to sex.

“It is possible to enjoy a happy and fulfilling sex life with a stoma,” says Kivits. “However, this can be daunting for couples at first, because you will need to explore how best to navigate the stoma and overcome any worries you might have about intimacy.”

Thirty-two-year-old Jess Bruno got her stoma bag aged 30, after being what she describes as “at death’s door” with Crohn’s. “While I was in that state of pain and suffering, sex was never top of mind,” Bruno explains. “Now I have the stoma bag, I’m not in pain anymore, thank God,” — but she explains that sex is different now.

“The first time me and my partner tried it, I could hear the stoma bag flapping like a crisp packet,” she says. “And I was like, How the hell am I ever going to feel sexy again?!” It wasn’t just the noise; Bruno references the vaginal dryness that her surgeon correctly warned her she might experience.

But over the past couple of years, as Bruno has become used to living with less pain and more body confidence, her sex drive has slowly increased. “Me and my partner had sex [the other day] and I had to physically pick up the stoma bag and move it out the way at some points,” she says. “But if I didn’t have the stoma bag, I know I wouldn’t be having any sex at all — my body wouldn’t be built for it.” Plus, Bruno has found what she describes as an “amazing water-based lube” which “really works”.

“Having a stoma should not stop you from having safe and enjoyable sexual relationships,” Baird confirms. “Stoma bags are designed to be secure and well fitted and there are many different styles of bag available. You can get bags that are small and discreet that can help you to feel more confident.

“Equally, your stoma is a part of you and there is no reason to cover or disguise your bag if you do not want to,” Baird continues. “Your attractiveness is not altered by your stoma, nor is attractiveness entirely based upon your physical appearance.”

Ultimately, Baird points out that “having a stoma does not define you and should not stop you doing anything at all,” including having a fun, exciting dating life. But if King, Bruno and Merifield want to emphasise anything, it’s that the ultimate take-home is to start by building your self-confidence.

“Try and be confident in your own skin before trying to date,” says Merifield. “I started off by wearing bikinis on holiday and was getting some lovely compliments [from] people. Then I began posting my stoma on social media and, again, it was all positive feedback. Now I just see my stoma as an extra accessory.”

Putting yourself first applies to sex, too. “I would start by pleasuring yourself,” Bruno advises. “Masturbation, or getting a dildo; whatever you want to do. That can give you some confidence that your body does work and you can be stimulated.”

Finding this self-confidence will help remind you never to settle for less than you deserve. King’s now very comfortable being single — “It’s actually really nice; I’m in this little bubble of being happy with my own company,” — and having been through so much, she won’t be settling. “Now, I know that I’m not going to get into a relationship for the sake of a man just… Liking me,” she says. “I know what I want and I’m not afraid to say no.” Kivits agrees with this sentiment, encouraging those concerned about navigating the dating landscape with a stoma to “remind yourself that you deserve care, compassion and respect, and that you are only available for the right kind of person.”

And once you do go on that date? Merifield has some parting words that may make all the difference. “We need to embrace that stomas have given us our lives back and ultimately are what got us on that date in the first place,” she explains. “So [let’s] send them some love while we sip our first-date drinks!”