When I first saw my stoma bag, after waking up from surgery, I felt overwhelmed by uncertainty, overloaded with information from my stoma nurse. The daunting thought of living with a bag attached to my abdomen felt like an ice box in the pit of my stomach. It took me years of lived experiences to grasp the many practical and emotional aspects that comes with living with a stoma. If I could go back and speak to my earlier self, here’s what I would want to share with him.
The learning curve is normal (and temporary)
In the first few weeks, changing my bag felt like an intricate procedure. My hands trembled at the thought of it; I worried about the pungent smell, the constant leaks and ballooning, I could never tell when my bowel had been fully emptied. I timed everything around the availability of the bathroom. I wish someone had told me that this acute anxiety doesn’t last forever.
Within a month, what seemed enormously complex became a natural routine. I learnt my body’s patterns, discovered which products worked best for me, and developed a rhythm that felt natural. The bag changes that once took thirty anxious minutes now take less than five. Your confidence will grow exponentially, even when it doesn’t feel like it.
I also wish I had known that there is ‘no one size fits all’. Not every product suits every person, and finding your ideal setup often requires a lot of trial and error. Different bags, plates and accessories exist because we’re all different. If something hasn’t worked don’t feel that you’ve failed, because each failure gets you closer to finding the right product. Ask your stoma nurse for samples and recommendations.
Your body image will evolve
I won’t pretend the physical changes were easy to accept. Looking at my abdomen post-surgery, I felt a profound sense of loss for my former lean body by clinging on to my skinny jeans. My delusions didn’t last long, but I had developed a phobia of mirrors. I bought an entire wardrobe of baggy clothes, and convinced myself I’d never feel attractive again.
Gradually, my perspective had shifted towards a validation of ‘this stoma gave me my life back’. It freed me from debilitating symptoms that had controlled my existence. The small pouch attached to my abdomen became less of a disfigurement and more of a lifeline. I began to feel grateful rather than resentful.
What I wish I’d known is that body image isn’t a linear journey from sadness to acceptance – it’s more nuanced than that. I am well aware of my stoma of every minute of everyday but I don’t allow it to dictate how to live my life. The anxiety I carried about being ‘damaged goods’ was far heavier than the reality. Intimacy is absolutely possible, and those who truly care about you will support you unconditionally.
To anyone newly adjusting: be patient with yourself and allow space for difficult emotions whilst also remaining open to adaptation. Seek support when you need it and celebrate small victories. What feels impossible today will become manageable tomorrow.
Your stoma journey is uniquely yours, but you’re walking a path that many others have navigated successfully. There is hope, community and a full life waiting on the other side of this adjustment period.
