Life is never linear, and everyone encounters difficulties at some point in their life. Living with a stoma is no exception. During the first few months after my colostomy, I came to begrudge my stoma due to the constant skin irritation, leakages while out with friends and passing wind during the most inappropriate times. However, I’ve learned to manage these moments and here are some techniques that have helped me cope when things feel overwhelming.
1. Creating a routine
Developing a routine has been crucial in giving me a greater sense of control. I start my day with simple habits: after showering, I change my stoma bag, check my skin for any signs of irritation, and shave the area if needed. I plan meals that are gentle on my digestive system and ensure I stay hydrated. If something doesn’t go as planned, I remind myself that it’s ok to adjust and move forward.
2. Shift my mindset
I recently discovered a method called reframing in the book “Why Has Nobody Told Me This Before?” by Dr Julie Smith (2022). This technique involves taking a challenging situation and reinterpreting it in a way that helps you move forward. For example, after a night out with friends, my stoma bag leaked, staining my crisp white shirt. The incident was so embarrassing that it put me off going out for a while. However, reframing allowed me to evaluate the situation objectively, leading me to realise that such incidents are rare and to seek solutions, like flange extenders, to prevent them in the future.
3. Lean on my support system
My family have been a constant source of support and strength throughout my cancer journey and my road to recovery after surgery. However, four in ten people have said they have shunned their friends and family because they do not want to be a burden on their loved ones (Mind.org.uk. (2019)). This has led to many people becoming isolated and has had a negative effect on their overall well-being. As awkward as it may be to start the conversation and accept that “it’s ok to say you’re not ok”, is better. Bottling it up will only make it worse.
4. Focus on what I can control
When things are spiralling out of control, I focus on small, actionable steps or what I like to call my ‘quick wins’. When you’re feeling overwhelmed, count down from 5 and then get moving or complete a simple task. Whether that’s organising my stoma supplies, taking the dog for a walk, or journaling my thoughts, these little actions help me regain a sense of stability. Remember, acknowledging your emotions is the hardest step.
5. Find inspiration in others
Living as an ostomate can often feel isolating, with only one in 335 people in the UK currently living with a stoma (Colostomy UK, 2022). It may seem like no one around you truly understands your struggles. That’s why connecting with others is crucial. Fortunately, there are numerous charities and organisations ready to assist. For instance, Respond Healthcare has 17 ambassadors, each active on various social media platforms and each with a unique and inspiring story. You can meet all of them, including me, on the ambassadors page using this link.
Final thoughts
Living with a stoma has taught me resilience, patience, and the importance of self-compassion. Tough days will come, but they don’t define me. By leaning on routines, self-care, and support, I’ve found ways to navigate the lows and celebrate the highs. If you’re going through something similar, know that you’re not alone – and it’s ok to take things one step at a time.
