If you’ve followed my journey for a while, you’ll know I’ve been living with my permanent ileostomy, who I affectionately named ‘Stacey stoma’, since 2011. After being diagnosed with Crohn’s disease at just seven years old, my surgery at 19 was truly life-saving.
What’s it like to live with a stoma?
Waking up with a stoma that day was only just the beginning of a whole new chapter. One that sometimes felt overwhelming, and can still do at times.
I’m Amy, and I’m here to let you know that I see you and you’re not alone. When we talk about living with a stoma, the conversation can often focus on the practical aspects of bag life: skin care, cutting your bag adhesive holes to size, and product choices.
Whilst these routine steps are essential, they often only scratch the surface of what living with a stoma feels like on the daily. I wanted to write this post to peel back the years and share the real, unfiltered reality. The mental wobbles, the social worries, the clothing choices and the little moments of joy. Whether you are recovering from surgery, supporting a loved one or simply navigating your new ‘normal’, I hope my blog post offers some comfort and reassurance.
Adjusting to life with a stoma: The early days
In the beginning, adjusting to life with a stoma felt like learning to navigate the world in a body I felt I had to create from scratch. Before surgery, much of my life revolved around Crohn’s. Crohn’s had turned every situation into “where’s the nearest toilet?”, food into my enemy and left me exhausted.
Waking up with Stacey stoma was a relief, but trusting my body didn’t happen overnight. I had to start from the beginning, and I wasn’t sure if I was ever going to trust it. During those first few months, every noise Stacey stoma made felt magnified and some bag changes felt like monumental tasks.
I spent weeks sticking to plain foods because I didn’t have an appetite. I had a lot of trauma related to eating and food, because I knew nothing good about it up until after surgery, several months down the line. I was also petrified of causing a leak or upsetting my stomach. But slowly, through trial, error and plenty of self-encouragement, those routines started to become second nature.
The mental and emotional side of stoma life
It is completely normal to grieve the life or body you had before ostomy surgery. I don’t really grieve my old body as such, because the parts I remember were tied down in illness, weight loss, bruises, acne, sores and more. Thankfully, I’m in a much better place with my body confidence but it doesn’t come easy.
I still have moments where fatigue sets in, my scar tissue can cause problems or my stoma output becomes unpredictable. I’ll always feel proud of my bag and my scars, but sometimes I find it hard to look at my stomach. When I gain weight, it usually gathers on my stomach, and this has been such a battle for me to overcome. I’m getting there with it, but it’s hard. It’s ok to acknowledge that bad days exist.
Living with a stoma isn’t a linear process where you reach a confident stage and stay there forever. It’s up and down, here, there and everywhere. Some days I feel completely empowered and ready to take on the world. Other days, an itch under my bag can leave me feeling annoyed and on edge. Being gentle with yourself on the hard days is just as important as celebrating the good ones.
The things people don’t always talk about
Let’s be honest: stomas make noise, output changes randomly, and our bags inflate with air at the most inconvenient times. When Stacey decides to trump in a quiet room or in the middle of a conversation, my initial reaction used to be sheer panic, and sometimes it still is, trying to muffle it with my hand, scarf or a cough.
Over time, I’ve learnt that being open with my anxiety surrounding it and even trying to see the funny side really helps. Another reality that gets less spoken about is the mental shift around output and hydration, especially when it’s watery and I don’t have a clue what’s caused it. That can take up a lot of my mental space, trying to work out if my normal go-to foods and management techniques will help and what next to try when they don’t. Knowing I have reliable delivery support from Respond however hugely helps with stoma life. It allows me to focus on living with my stoma and not running out of supplies.
Everyday situations: outfits, dating and getting out there
One of my biggest fears post-surgery was “what am I going to wear?”. I worried everyone would notice the bag bulge under my clothes. The truth? Most people are far too busy worrying about themselves to scan anyone else’s tummy. Stoma supportwear has been a total game-changer for me, as has experimenting with different outfits. Feeling comfy is key to me and if I don’t feel comfy, I won’t wear it. However, I do wear what I want with my stoma.
Socialising and dating with a stoma can also feel daunting at first. When I met my husband, Ben, I was nervous about talking about my bag. On one of our very early dates, my bag actually leaked and his calm, supportive reaction showed me that the right people will see your stoma as just a tiny footnote of who you are. Travelling, eating out and going to events like gigs or festivals can take a bit of extra planning and preparation, but having a stoma doesn’t mean standing on the sidelines.
Challenges, surprises and the unexpected positives
Living with a stoma certainly comes with physical challenges yet the surprises haven’t all been negative. Having Stacey stoma gave me a relationship with food that I thought I’d never have. I love food, even if I still have to miss out on some things.
The reality is that what I can eat now is such a variety and on a much bigger scale than what little I could eat for years before my surgery. I went from years of living in agony after every meal to enjoying going out for food, trying new recipes and gaining curves!
Summary
If there’s one thing I want you to take away from reading this, it’s that there is no right or wrong way to adapt to living with a stoma (so long as it’s safe and isn’t putting you or anyone else in danger, of course). It’s your journey and yours only. You don’t have to feel positive every single second of the day nor do you have to hide the days when things feel heavy. Your emotions are valid, whether you are 10 days or 10 years post-surgery. Having an ostomy will change your life, but it certainly doesn’t limit your potential. In fact, it often does the exact opposite.
Take things one day, one routine, and one big or small milestone at a time. Be gentle with yourself along the way. For many of us, getting a stoma wasn’t the end of our story, it was simply the beginning.
