Having my life-saving, permanent ileostomy surgery back in 2011 due to severe Crohn’s disease completely changed the trajectory of my life. Before surgery, my world revolved around severe pain, toilets, endless medication that never seemed to do the job, uncertainty and anxiety. I had forgotten what it felt like to live without fear, or to just exist without pain and upset being my dominant emotions.
I’m Amy, and I’m here to let you know that I see you and you’re not alone. If you are new to navigating stoma life or coming to terms with a new diagnosis, you might be wondering if you will ever feel like yourself. I honestly believe that having a stoma is not the end of your story. It’s just the beginning. Living with Stacey Stoma (my stoma!) has completely shifted how I view the world, helped me to rebuild routines and discover a deeper sense of gratitude and freedom than I ever thought possible.
Appreciating the little things in life
When you have been chronically ill for a long time (or for all your life, in my case, until my stoma), the world shrinks. Everyone carries on around you whilst your daily routines revolve around hospital visits, flares, side effects from medication and worry around where the nearest toilet is.
Once I started to adapt to life with Stacey Stoma, I began to notice and cherish the simple moments that I had only dreamed of before. Appreciating the little things in life became my new superpower. Simple pleasures like sitting comfortably on the sofa with a warm cuppa, going for a peaceful walk with the dogs without scanning the horizon for a toilet, or waking up not in pain became huge milestones. Having a stoma taught me that happiness isn’t always found in the big achievements. Often, it is found in the quiet and painless, everyday moments.
How priorities have changed
Before surgery, my main priority was simply surviving the day and managing my symptoms as best as I could. After having my ileostomy, my entire perspective on what actually matters in life transformed. I stopped worrying as much about minor inconveniences or trying to live up to unrealistic expectations.
My priorities shifted toward taking care of my physical and mental well-being, surrounding myself with supportive people, and protecting my energy. I learned to listen to my body, honour my rest days when fatigue hits, and communicate openly with loved ones. Life is far too short to waste energy on things that don’t bring you joy or peace.
Gaining a new sense of freedom and confidence
Rebuilding confidence after surgery takes time, and that is completely normal. In the beginning, I worried about what clothes I could wear, whether my bag would show, or what people would think. Over time, however, I realised that my stoma gave me far more freedom than it ever took away. Finding a solid stoma care routine and using reliable products gave me the reassurance I needed to step back out into the world with my head held high.
Having my stoma delivered a new sense of confidence. Not because my life became instantly perfect, but because I realised how strong my body was. Whether wearing stoma supportwear under my workout gear, enjoying beach days on holiday, or navigating dating and relationships, I came to see my ostomy bag not as something to hide, but as a badge of survival.
Things that I can now enjoy that I couldn’t before
One of the most noticeable ways my perspective changed was through my relationship with food. Before surgery, eating was linked with fear and pain. Smelling food could trigger nausea, and almost everything I ate left me in severe discomfort. Post-surgery, as my body healed, I was able to build a healthier, happier relationship with food and start enjoying meals again without fear.
Beyond food, my stoma has allowed me to enjoy spontaneous day trips, social events, travelling, and long walks with my husband and dog. Activities that used to feel like overwhelming hurdles became everyday pleasures and there are no words to describe that feeling.
What my stoma taught me about resilience and gratitude
Living with a chronic illness and a stoma teaches you lessons that no textbook ever could. It teaches you true strength, patience and gratitude. You learn that even on the hard days, when fatigue takes over or bag changes feel tedious, you are capable of handling far more than you think. It also instils a deep sense of gratitude. I am grateful for the incredible medical teams, my stoma nurses, and reliable prescription services like Respond that make managing my stoma and supplies much less effort.
Most importantly, I am grateful for my body. It may be scarred and it may work differently, but it saved my life and continues to carry me through every single day.
A moment that made me appreciate life
It’s quite a regular thing. Sitting at home with my husband, Ben and our dog, talking about our days on the sofa, laughing and sometimes having a TV tea. Suddenly, Stacey Stoma makes a loud, uncontrollable noise, a classic stoma fart! Instead of feeling embarrassed or tense, we both are super relaxed and say “Hi Stacey” and carry on with what we were talking about.
It’s become so normal for us. Looking back, it’s amazing just how far I have come. Pre-surgery, I was terrified of intimacy, worried if anyone would find me attractive, or if I could ever live a normal life with an ostomy. Sitting there, feeling completely loved, accepted, and at ease, I felt an overwhelming wave of appreciation. My stoma hasn’t ruined my life, it has given me my life back.
Conclusion
Adapting to life with a stoma is a journey filled with ups and downs, and it is entirely okay to have bad days along the way. Healing isn’t linear, and building confidence takes patience and self-compassion. If you are currently struggling or feeling overwhelmed by the changes, please be gentle with yourself. Take things one day at a time, lean on your support network, and don’t be afraid to reach out to healthcare professionals or others who understand what you are going through.
Your stoma does not define you, but it can give you a brand-new appreciation for the beauty of living. For so many of us, having an ostomy was never the end of the road, it was simply the start of a wonderful new chapter.
Until next time,
