When you’re adjusting to life after surgery, it can feel hard knowing how, or if, you want to tell others about your urostomy. It’s natural to feel unsure at first. You may wonder who needs to know, how much you should share, or whether people will understand.
There’s no right or wrong. You are in control of who you tell, when you tell them, and how much detail to go into. It’s important to take things at your own pace, and know that the right people will meet you with kindness and support.
Choosing who to tell
It’s understandable to feel apprehensive about having conversations about your urostomy. But you may find that sharing with certain people lifts some of the weight off your shoulders. For many urostomates, this means talking to close family and trusted friends – people who love you and want to walk alongside you as you adjust.
It might also be helpful to let a few others in on your situation and how it is affecting you. Perhaps your manager at work or a supportive colleague, so you don’t feel you’re carrying everything alone.
Understanding goes both ways
Talking about your urostomy can be a step towards creating understanding and helping you find support when you need it. When you’re ready to talk, think about what feels comfortable for you. Do you want to share just the basics, or open up about your feelings too? There’s no wrong answer.
Not everyone will know much about stomas, so try to give people time and space to process. They may have questions, but it’s up to you how much you choose to share. Many urostomates find that honest, open conversations help clear up any confusion and often make bonds even stronger.
Talking to friends and family
Having a supportive network around you can do so much to help your recovery. Given what you have been through with your health, you may have friends and family members who already know about your urostomy.
Explaining how you are feeling, and letting them know how best they can support you – both practically and emotionally – can help reduce your anxiety as you adapt to life with your urostomy.
If some of your relatives and friends don’t yet know about your stoma but you want them to, you could ask those who do to give them the basics until you feel ready for a proper conversation.
Talking to your partner
Perhaps the most personal conversation of all is with your partner. If you’re already in a relationship, honesty can deepen your connection. It’s normal for your partner to have questions, but most of the time, they’ll simply want to know how they can support you. This is an opportunity to share your feelings, your worries, and your hopes. Facing this together can help you feel closer.
If you’re thinking about dating or starting a new relationship, it’s natural to feel nervous about when to mention your urostomy. There’s no rulebook, so trust your instincts. Some people like to share early on, while others prefer to wait until the relationship feels more established and secure. The right person will see you first, not your urostomy.
Conversations with young children
If you have little ones in your life, it makes sense to keep things simple and reassuring. A short, clear explanation is often enough. Answer any questions as they come up; how you respond is likely to affect the way your child thinks about people’s differences and treats others as they grow up.
Finding it difficult to know where to start? Take a look at our children’s book, ‘Bags, Bags, Bags’, and download a copy free of charge. Created with under-7s in mind, it’s full of fun and bursting with colour, helping to spark conversations naturally.
Speaking to your employer and colleagues
For many urostomates, work is a big part of daily life. It’s normal to feel nervous about how a stoma might fit into that. Having an open conversation with your employer can ease some of those worries. Whether it’s about taking breaks, adjusting schedules, or just knowing they’re aware, being upfront can pave the way for a smoother return to work.
As for colleagues, you may decide that telling just one or two people you trust is enough. Many people are surprised by how understanding their colleagues are once they open up.
You’re never alone
Adapting to life with a bag takes time, patience and self-compassion, but having a urostomy does not need to define who you are.
With time, these conversations will feel easier, and you’ll find that the people who matter most will stand beside you with love and understanding.
The Urostomy Association is here for you, too. Our trained volunteers can provide reassuring, confidential one-to-one support, by telephone, face-to-face or through our branches and groups. All our volunteers are urostomates themselves, or family members, so can understand your concerns.
To be put in touch with a volunteer do contact us by phoning our helpline on 01223 910854, or via this contact us link.
We also host a private Facebook Group – Urostomy Association Help and Support Group – a safe space for you to get to know and learn from others who are facing similar situations, or have done so in the past.
In their own words
“My advice to anyone struggling to find the confidence to tell those close to them about their urostomy is take your time but don’t overthink it. Your urostomy is a reminder of how strong you are and what you’ve had to overcome. You’ve done the hard part, so don’t forget that.
“When it comes to work, be open with your manager so they have a good understanding of your situation. Ask for a catch-up with them to discuss it, and perhaps take some literature along with you to help you explain.”
Lorna Coates
“I do feel that health conditions and disabilities are so much more talked about now than when I had my urostomy operation 15 years ago. At first, I found it a bit daunting telling people about my stoma, but I was surprised at how accepting and understanding they were.
Many people say, “Really? I would not have known if you hadn’t told me.” I thought having a urostomy made me stand out as different, but people see it as just one aspect of me.”
Allen Rowlinson
- Read more about going back to work after a urostomy
- Read Lorna’s blog
- Read Allen’s blog
