Adjusting to life with a stoma after surgery can be an incredibly disorienting experience. Feelings of anxiety, panic, and even a sense of despair can take hold. Ostomate Becky Holmes understands this firsthand, recalling her own experience: ‘I couldn’t accept it, I couldn’t touch it, I couldn’t clean it or even change the bag. I suffered from panic attacks, severe anxiety, and felt like my life was over’. If these words resonate with you, know that you’re not alone.
Having a stoma can be a big trauma not only for the body but for the mind. Around 176 000–20 000 people are living with a stoma in the UK, with approximately 21 000 patients undergoing stoma formation surgery each year (Aibibula et al, 2022). Over 20% of ostomates experience long-term significant psychological challenges (Black and Notter, 2021), with stress being a common symptom. As this latest data is from a few years ago, these figures could now be higher.
While this doesn’t sound great, there are things you can do to overcome these issues and live a full and active life. Becky is proof of this as she is now a registered counsellor who offers support to people who suffer from IBD or are living with a stoma. You can find out more about Becky’s company by searching for ‘Becky Holmes Counselling’ online. Becky’s stoma doesn’t stop her from doing anything; she runs ultramarathons and goes to the gym five to six days per week.
Ahead of Stress Awareness Month in April, she is sharing her top tips to help you manage stress when living with an ostomy.
Take it one day at a time
When there has been a big life change, it can be easy to look far into the future and jump to conclusions. Rather than doing this, Becky says: ‘Taking it one day at a time is best’.
‘You could have a bad week or a bag that leaks on your stomach and causes a lot of pain. We have different days.’ She remembers times she looked in the mirror and felt completely hopeless, and other times when she felt much stronger.
It is important to remember that things are temporary and that includes the difficult times.
Becky still plans in terms of events she’s attending and emphasises the importance of this to have things to look forward to, but she says staying in the moment can help to reduce uncomfortable mental emotions.
Be prepared
Becky says that initially, the most stressful thing about living with an ostomy was going out. ‘I would have to try and plan ahead of time to locate the toilets. If I was going out for food, I would look at menus in advance to figure out what I was going to eat; I would try and stick to bland food to avoid potential leakages.’
She encourages anyone with a stoma to get a RADAR key. A RADAR key is a large universal key that opens certain locks that are installed in over 9000 publicly accessible toilets across the UK, as well as restaurants and other venues, enabling you to have quick and easy access. If you are a patient (or parent/carer of a patient) with Crohn’s or ulcerative colitis and a new member of Crohn’s and Colitis UK, you can request a key during sign-up. Alternatively, you can purchase one for £5 from Disability Rights UK.
Members of Crohn’s and Colitis UK can also get a Can’t Wait Card, which makes it easier to ask to use toilets in shops, restaurants and other venues without having to explain your condition. It is also ideal for travelling as it is available in 30 different languages.
Another thing Becky struggled with was stress causing her output to change and this caused further stress as a result. ‘When I’m stressed the consistency is quite watery and that can burn my skin. For some, you might have to empty your bag more often when you’re stressed and you might not be close to a toilet. If you then get a leak, it’s stressful.’ So how do we break this vicious cycle? Having supplies with you, such as food to thicken your stool or powders and creams to help with soreness, can help you to feel prepared and, therefore, more at ease.
Seek professional support
While having the support of friends and family is great, getting a suitable therapy can be beneficial.
Counselling can help you to come to terms with the change and rebuild your self-confidence. ‘Family and friends haven’t got the same listening skills as a counsellor,’ Becky adds, ‘we need someone professional, like a counsellor, who is not going to judge, will really listen to you and has empathy (for your situation).’
Meanwhile, forms of hypnotherapy have been proven to be effective at reducing stress and promoting relaxation (Fisch et al, 2020). Certified hypnotherapist Lada Shustova-Carter, LSC Therapy, says: ‘Relaxation, in the form of hypnotherapy, can work wonders in helping you to deal with the challenges a stoma can bring’.
‘Interestingly, many people with a stoma can actually be more, rather than less, receptive to relaxation. Physiologically, our energy is focused almost completely on coping with the alien changes in our body – and away from dealing with responsibilities, external events and long-term goals. This has the powerful effect of freeing the mind to live in the moment, to be more observant and more thoughtful.
‘Hypnotherapy can be a beneficial contributing factor in changing the thinking to a more positive, accepting and liberating state,’ she continues. ‘Just a few sessions with a professional hypnotherapist can give us the necessary mind shift and relief. This is because, in the state of hypnosis, we are able to access our subconscious mind which allows us to rewrite the unhelpful story we’ve been telling ourselves.’
Lada has created a short hypnotherapy recording exclusively for StomaTips to encourage calm, which you can listen to below:
As well as gaining support from Becky and Lada, you can access the NHS mental health services, find a registered counsellor via the British Association for Counselling and Psychotherapy or a registered hypnotherapist on the National Council for Hypnotherapy website, or phone Colostomy UK’s free 24-hour helpline number: 0800 328 4257.
Get to know your body
One thing Becky wishes she’d known when she first had stoma surgery is to ‘listen to your body.’
‘Don’t jump into normal activities straight away. I wish I’d known that more,’ she says.
‘I tried running after 10 weeks and my body just wasn’t ready for it. You need time to rebuild your strength and stamina. If your body is tired, relax. Also, learn how to say no to people.’
Becky with her medal after running the ultramarathon
Exercise regularly
Think you can no longer exercise now you have a stoma? Think again. While you do need to allow your body time to heal after surgery and should follow the advice of health professionals, Becky recommends exercise to release stress. Evidence confirms regular exercise reduces levels of the body’s stress hormones, such as adrenaline and cortisol (Mental Health Foundation, 2016).
‘Try not to change your routine and go on with life as normal,’ Becky says. You might have to adapt certain exercises to suit you and your stoma but it is possible to maintain a fitness routine.
If you’re not up to vigorous exercise, simply going for a walk in nature can help. In fact, evidence shows exposure to nature can help to reduce stress (Jimenez et al, 2021). So, that’s a double bonus.
Walking therapy is another option that can aid your mental health (Wise, 2020) and is a service that Becky offers clients.
Becky and her stoma
Keep talking
Whether it is with a professional or loved ones, Becky emphasises the importance of having someone to talk to. It may be cliché but as the old adage goes: ‘a problem shared is a problem halved.’ Despite being a counsellor herself, Becky finds comfort in also speaking to a therapist.
She believes it’s also important that loved ones actually get some support. ‘My husband has been my rock,’ she says, ‘but, (in the early days), no one ever really asked him how he was.’
‘There are also lots of support groups on social media,’ Becky adds. ‘Remember not to be ashamed and to be proud.’
While she still might have occasional issues with her stoma, her fears and trauma are in the past. Now Becky reflects proudly on what she has achieved, from running 26.2 miles in under five hours to overcoming her mental hurdles, and you can too. Her final takeaway: ‘you might feel alone, but remember you are not.
Mindful activities you can try
Meditate: similar to hypnotherapy, meditation helps you to focus inwards and reach a state of calm. Becky is a big advocate for meditation and does it daily. ‘If I’m stressed during the day, I’ll do a quick three- or five-minute meditation,’ she says. ‘I also meditate three times a week for 30 minutes.’ There are various meditation apps available such as Headspace and Calm which offer some free meditations and others at a cost or try Balance for free for a year
Breathwork: Pause for a few minutes and try a breath technique whenever you feel stressed. Box breathing is a great exercise for calming the body and mind. Here’s how to master box breathing:
- Breathe in for four seconds
- Hold for four seconds
- Breathe out for four seconds
- Hold for four seconds
- Repeat this cycle four to six times.
Use calming scents: surrounding yourself with certain smells can be powerful when it comes to stress reduction. It’s well known that lavender in particular is effective at reducing anxiety (Vinall, 2021). You could try using a lavender-scented pillow spray when you go to bed or putting a few drops of essential oil in a diffuser and letting it spread around the room
Read: Perhaps snuggling up with a good book is more your thing. According to a study (The Telegraph, 2009), conducted by Mindlab International at the University of Sussex, reading for just six minutes can reduce stress levels by as much as 68%, even more than listening to music or going for a walk.
Disclaimer: Speak to your stoma care nurse or a healthcare professional if you’re struggling with stress and before making any changes to your lifestyle.
Aibibula M, Burry G, Gagen H et al. Gaining consensus: the challenges of living with a stoma and the impact of stoma leakage. Br J Nurs. 2022; 31(6). https://doi.org/10.12968/bjon.2022.31.6.S30
Black P, Notter J. Psychological issues affecting patients living with a stoma. Br J Nurs. 2021; 30(6). https://doi.org/10.12968/bjon.2021.30.6.S20
Fisch S, Trivaković-Thiel S, Roll S et al Group hypnosis for stress reduction and improved stress coping: a multicenter randomized controlled trial. BMC Complement Med Ther. 2020; 20: 344. https://doi.org/10.1186%2Fs12906-020-03129-6
Jimenez M P, DeVille N V, Elliott E G et al. Associations between nature exposure and health: a review of the evidence. Int J Environ Res Public Health. 2021; 18(9): 4790. https://doi.org/10.3390%2Fijerph18094790
Mental Health Foundation. How to look after your mental health using exercise. 2016. https://www.mentalhealth.org.uk/explore-mental-health/publications/how-look-after-your-mental-health-using-exercise#paragraph-18511 (accessed 20 February 2024)
The Telegraph. Reading ‘can help reduce stress’. 2009. https://www.telegraph.co.uk/news/health/news/5070874/Reading-can-help-reduce-stress.html (accessed 20 February 2024)
Vinall M. How to use lavender to calm your anxiety. 2021. https://www.healthline.com/health/anxiety/lavender-for-anxiety (accessed 20 February 2024)
Wise E. The benefits of walking and talking therapy. 2020. https://www.counselling-directory.org.uk/memberarticles/the-benefits-of-walking-and-talking-therapy (accessed 20 February 2024)
Gemma Harris is a freelance journalist & health blogger