Battling bowel cancer is a road that twists and turns with challenges, but one of the most life-altering changes I faced was learning to live with a stoma. At first, it felt like my body had become a stranger to me, something I couldn’t recognise or understand. But over time, I’ve learned that this small pouch, which was crucial for my survival, could also be a source of strength and resilience.

Accepting your stoma

Acceptance didn’t come overnight. It took patience, tears, and a lot of support. According to a study – mentioned in Julia Samuel’s book, This Too Shall Pass – shows that people with cancer are 30% more likely to become depressed and 20% of those living with a chronic illness. Often those who have had a life-changing experience or illness are left grieving their former self (that healthier version of who they used to be). Here’s what helped me along the way:

  • Give Yourself Time: Healing is not just physical; it’s emotional, too. Allow yourself to grieve the loss of your old body and embrace the new.
  • Educate Yourself: Knowledge is power. Understanding how your stoma works and how to care for it can make you feel more in control. Finding the right products allowed me to get out of the house as self-conscious of my stoma leaking and smelling. Ask your stoma nurse for samples of any products that may interest you.
  • Connect with Others: Talking to people who have been through the same experience is invaluable. Support groups, both online and in-person, can offer comfort and advice. I discovered Respond through Instagram and my life has never been the same.
  • Focus on What You Can Do: Instead of dwelling on limitations, celebrate the activities you can still enjoy. This positive mindset makes a huge difference and taking it one step at a time is essential towards making a lasting change.

Finding confidence again

Regaining confidence takes time, but it’s a journey worth taking. Here are strategies that helped me rebuild my self-esteem:

  • Personalise Your Pouch: You and your stoma are unique. Many ostomates name their stomas, this can encourage acceptance, I haven’t named mine…yet. There are also an array of additional products and accessories available that can help you feel more comfortable. and compliment your pouch. Speak to your stoma nurse to find out more and don’t be afraid to ask for samples of any products that interest you.
  • Stay Active: Exercise can boost your mood and help you feel strong. Start slow and listen to your body. No one is expecting you to run a 5k straightway but it is important to have a goal in mind.
  • Dress Comfortably: Wear clothes that make you feel good and don’t irritate your stoma. There’s no need to sacrifice style for comfort.
  • Speak Up: Don’t be afraid to tell your friends, family, and healthcare team about your needs. It’s also important that you speak with your workplace about your condition, a good employer can offer ‘reasonable adjustments’ and help your transition back to work go as smoothly as possible.

Tips for everyday life

Living with a stoma means adjusting your daily routines. Here are some practical tips:

  • Be Prepared: Having the right bag with the right fit can help you avoid any accidents that may occur but it’s always good practice to carry a small kit with supplies for quick changes or emergencies when you’re out and about. Make sure you keep an inventory of your stoma supplies and place your order at least a week in advance.
  • Watch Your Diet: Some foods may cause gas or odour. Keep a food diary of how different foods affect you and adjust accordingly. Make sure you share this with your family and check the menu in advance when dining out. For me, I avoid cabbage, raw onion and baked beans.
  • Stay Hydrated: Drink plenty of water to keep your digestive system running smoothly. Hydration is key!
  • Practice Good Hygiene: Regular cleaning and maintenance will prevent infections and keep you feeling fresh. Pamper your stoma with barrier creams, cleansing wipes and odour-eliminator sprays that complement your skin and check for irritants around the opening. If you have any concerns make sure to tell your stoma nurse as they can recommend products that could help.

Embracing new adventures

Life with a stoma may seem daunting, and at times stressful, but it can also open doors to new experiences. Here’s how I learned to embrace adventure:

  • Travel Smart: Plan ahead when travelling. Research facilities and pack extra supplies. Many ostomates travel regularly – your stoma doesn’t have to hold you back. Respond have an amazing range of products to support you whilst travelling, Respond Refresh Adhesive Remover has a fresh linen scent which helps when using public toilets.
  • Try New Hobbies: Discover activities that are stoma-friendly. Swimming, painting, or gardening can be therapeutic and fulfilling.
  • Educate Others: Use your experience to teach people about living with a stoma. This not only raises awareness but also strengthens your own acceptance. I found Respond to be an amazing platform for real-life stories, hints and tips and they have a huge following on social media.

Celebrating milestones

Every step forward is worth celebrating. Acknowledge your progress:

  • Keep a Journal: Document your journey, write a blog or use social media to champion your stoma. Reflecting on how far you’ve come can be incredibly empowering.
  • Set Achievable Goals: Whether it’s walking a little further each day or trying a new food, small victories lead to big confidence boosts.
  • Celebrate Anniversaries: Mark the date of your surgery or other milestones as a celebration of life and resilience.

Support for loves ones

Your journey affects your loved ones too. Here’s how they can support you:

  • Learn Together: Invite them to appointments or support group meetings. Understanding your situation helps them provide better support. They can often help articulate your POV and highlight any concerns you may have missed.
  • Open Communication: Encourage honest conversations about feelings and fears. My children are my biggest cheerleaders, constantly asking questions about my health, and my stoma they also love going to school and educating their peers and teachers. And my wife who is my rock who’s never wavered by my side. It’s okay to lean on each other.
  • Patience is Key: Remind them that adjusting to life with a stoma takes time, and their patience means the world.

Final thoughts 

Living with a stoma is a profound change, but it doesn’t define who you are. With each passing day, you can grow stronger and more confident. Remember, it’s not just about surviving; it’s about thriving. You’re not alone on this journey, and with the right mindset and support, you can rise above and live life to the fullest.