Stoma Worries & Anxiety

Living with a stoma can bring practical questions as well as “what if” thoughts. You may worry about your pouch leaking, someone noticing it, or managing an unexpected situation away from home. This page explores those worries and how they can begin to limit everyday life, without dismissing your practical care needs. 

Do worries about your stoma hold you back? 

Perhaps you turn down invitations, hesitate to travel or feel unable to relax when you are out. You might spend more time anticipating problems than enjoying what you are doing. Some of these questions may sound familiar: 

• “What if my pouch leaks?” You may worry about a leak happening unexpectedly, managing it away from home or feeling embarrassed in front of other people. 

• “What if other people can smell it?” Concern about odour may leave you wondering whether others have noticed something, even when you have no clear indication that they have. 

• “What if it makes a noise?” Quiet rooms, meetings or time with other people may feel uncomfortable when you are waiting for a sound and wondering how others might respond. 

• “What if people notice my pouch?” You may feel self-conscious about your clothing or appearance, or worry that someone will ask questions you are not ready to answer. 

• “What if I can’t find a toilet?” Unfamiliar places may feel difficult when you are unsure where facilities are or whether you will have the privacy and space you need. 

• “What if I need to empty it while I’m out?” Managing your pouch outside your usual routine may feel daunting, particularly somewhere unfamiliar. 

• “What if something goes wrong?” Sometimes the worry is less about one specific problem and more about uncertainty: not knowing what might happen or how you would handle it. 

• “Will I be able to travel?” Being further from home, changing routines or staying somewhere new may raise questions about supplies, facilities and managing your stoma along the way. 

• “Can I go back to exercise?” You may want to be active again while feeling uncertain about what is appropriate for your recovery. Your treating team can help you understand your individual physical limits and care needs. 

• “What will happen during sex or intimacy?” You may have concerns about how your stoma or pouch will affect intimacy, sexual activity and your relationship. You might worry about your pouch leaking, making noises, being visible or affecting your confidence when you are close to someone. You may also wonder whether sex will feel different, whether certain positions will be comfortable or whether your partner will feel differently about your body. These concerns are understandable, particularly while you are adjusting to life with a stoma. With time, communication and a little preparation, many people find ways to enjoy intimacy and maintain fulfilling sexual relationships. 

Understanding the anxiety cycle: 

Worry → avoidance → short-term relief → greater worry next time 

Imagine being invited to a café and thinking, “What if my pouch leaks?” You decide not to go and feel relieved. But missing the visit also means missing an opportunity to find out how you might manage. The next invitation may feel just as difficult, or more difficult. This is the cycle described above: avoiding a situation can bring immediate relief while leaving the original worry unanswered. 

Understanding this cycle is not about blaming yourself or pretending that practical problems cannot happen. Necessary pouch care, appropriate supplies and advice from your stomal therapy nurse remain important. The question is whether worry is stopping you from doing things that are otherwise appropriate for your health and recovery. 

Taking the next step: 

You do not have to resolve every worry before asking for support. For questions about leakage, pouch fit, odour, supplies or physical activity, speak with your stomal therapy nurse or treating team. For worry that is limiting your daily life, a psychologist or another mental health professional can help you explore what is happening and consider next steps suited to your circumstances. 

The free Bladder and Bowel Anxiety Program on this website includes support for stoma worries such as concern about pouch leakage, noise or smell. Its modules cover how worry is kept going, unhelpful threat beliefs, excessive body monitoring, safety behaviours and avoidance, and gradual exposure to situations you have been avoiding. You can work through it at your own pace, alongside advice from your healthcare team. 

Explore Getting Back to Everyday Life and Managing Difficult Thoughts & Feelings for more information about confidence, worry and returning to activities that matter to you. 

Urinary and faecal incontinence are medical conditions. Urinary incontinence constitutes involuntary loss of urine while faecal incontinence involves the involuntary loss of faecal matter. Both conditions are highly distressing and impact many aspects of a sufferer’s life (e.g., social and occupational capacity and psychological well-being).

Incontinence is common with 1 in 5 (21%) Australian adults affected. Around 4.2 and 1.3 million Australians over the age of 15 live with urinary and faecal incontinence respectively. The rates are higher in residential age care with over 70% of residents experiencing at least one form of incontinence.

The prevalence of incontinence increases with age, with female more likely to experience incontinence than males (of those experiencing urinary incontinence, 80% are female). It is predicted that the rates of incontinence will increase, up to around over 5.6 million Australians affected by these medical conditions by 2030. The financial costs of incontinence are significant (over 42 billion Australian dollars per year). For further details about the prevalence and economic impact click HERE.