Intimacy and relationships with a stoma | by Rachel

Intimacy with a stoma… such an important topic, yet one many of us can feel too uncomfortable to talk about with friends, our partners, or even our stoma nurses. The fact is, intimacy and sexual health are essential to living a full and healthy life. Whether you are in a relationship, dating, or single, having stoma surgery may change things.

Dating brings up the question of whether you tell someone upfront, which I would always suggest, as it allows you to sift through the bad eggs early. In a relationship, both of you are going to experience the after-effects of surgery, both physically and emotionally. For same-sex couples, the surgery you have may change the whole dynamic and role of a person as a sexual partner, which can inevitably alter a relationship.

Sexual health culture is changing

There is a huge drive in the stoma nurse community at present, seen through symposiums and more notably at the most recent ASCN (Association of Stoma Care Nurses), where the importance of sexual health is being highlighted. Stoma nurses are being encouraged to be more vocal and to give patients a platform to discuss how having a stoma may affect them in terms of intimacy. There is a vast difference in how comfortable people feel discussing this topic across generations. Modern society is more open than ever and patients need to know they can ask questions and that seeing their stoma nurse is a safe space to talk through concerns, both physical and emotional.

It is important to remember that stoma nurses are wearing many hats. They are not typically trained gynaecologists or sexual therapists, but they can address basic concerns and start the conversation. Starting to talk is half the battle. If your concerns require further medical intervention, they can help refer you to the appropriate specialist.

How might your sexual health change post-surgery?

Physically, patients may experience dryness, loss of libido, or nerve damage, which can affect sexual function. This varies greatly depending on the individual, the type of surgery you have had, and any underlying conditions. Please discuss possible side effects directly with your medical team. For women, changes in periods including flow, duration, and comfort, are widely shared through lived experiences in online communities. Through conversations with women on my platform and many discussions on the podcast ‘Beyond The Pouch‘, I have found that patients are often not spoken to about these potential side effects. This can come as a shock, particularly when you are already trying to come to terms with the stoma itself.

Where do you start?

Talking. As cliché and obvious as it sounds, it really does come down to open communication. Laying your cards on the table with your concerns, your own and your partners, is key. Often, the fears and worries you carry may not be as significant as you imagine once your partner’s support and feelings are taken into consideration. What you worry might concern them, may not even cross their mind. Post-surgery, when you begin to think about being physical again, setting boundaries and expectations together can help set the tone. Try not to put too much pressure on the first time being an incredible experience. You have had major surgery and that deserves patience and care. Be kind to each other and take things slowly. On the other hand, if you are feeling great and want to steam ahead, and you are clinically safe to do so, then have fun!

Practical tips

For those who want to be more intimate post surgery but don’t yet feel confident, please know this is completely normal. You are adjusting to a new reflection and a change to your body that wasn’t there before. For women, there are practical options to explore that may help build confidence, such as waistbands, ostomy underwear, or crotchless underwear if you wish to keep your stoma bag secured without removing your underwear. Talking openly with your partner about what makes you feel comfortable and confident during intimacy can make a huge difference. Simply folding or securing your stoma bag in half can be a helpful starting point.

Above all else…

We are all deserving of feeling loved, wanted and adored, whether we have a stoma or not. Please do not let yourself, or anyone else, make you feel otherwise. Finding your confidence and accepting the new you can feel like an uphill battle, and that should never be underestimated. I hope that one day, if you aren’t there yet, you find that confidence and celebrate your body for what it is today.

Rach
@gutsy.mum