When I first found out I needed stoma surgery, my head was spinning with questions. Having been diagnosed with Inflammatory Bowel Disease (IBD) for years, my body was exhausted, but my mind was even more depleted by the sheer weight of the unknown. I vividly remember being given a fake stoma to stick on my body, stoma bags, accessories and staring at the diagrams the stoma care nurse handed me. Don’t get me wrong, I was honestly ready to have my stoma because I was desperate to actually live life, but I was also so fearful.
Sharing my journey has shown me just how common those initial fears are. This topic feels incredibly important to share right now because the clinical explanations we receive before surgery rarely address the profound emotional and social anxieties we carry. Whether you are facing upcoming surgery, are a new ostomate navigating those fragile first milestones, or are a loved one trying to understand, this space is for you. Together, we are going to dive deep into de-bagging common myths surrounding living with a stoma, replacing widespread misinformation with lived experience, practical routines, and the unapologetic honesty you deserve.
Myth 1: Your life and hobbies are effectively over
One myth I hear so much is that having a stoma turns you into a fragile version of yourself who can no longer enjoy life. Before my operation, I just existed; in agony and misery most of the time. For me, I was keen to get my stoma so that I could effectively start living. However, for many, the worry that a stoma will take away from them what makes them the person they are is a huge thing.
The reality, however, could not be more different. For the vast majority of us, a stoma doesn’t take away our lives. It gives them back. Chronic illness is what kept me trapped at home, often clung to the toilet and wishing life was different. Once my wounds from surgery healed and I established a steady routine, I realised my stoma bag was a passport to freedom. From going to gigs to getting myself into fitness, my bag has accompanied me through it all. It’s been an enabler.
If you are worried about physical activities, please know that your core strength can be rebuilt safely with patience, proper support garments and the correct advice. There are support belts, high-waisted swimwear, and flange extenders designed specifically to give you extra peace of mind when it comes to feeling secure with your stoma bag.
Myth 2: Everyone will be able to smell it
Let’s talk about the anxiety that keeps almost every new ostomate awake at night: the fear of odour. It is completely natural to worry about this when adjusting to a new internal plumbing system! In the early days of my recovery, I found myself constantly sniffing the air in a panic, utterly convinced that everyone in the room could smell exactly what was happening beneath my clothes. I also found that my sense of smell was so much more heightened after surgery and the slightest thing would turn my stomach and make me sick, but I did develop an ileus, where my bowel “went to sleep” from the trauma of surgery for a few days.
Here is the truth: modern ostomy technology is quite magical. The medical-grade plastics used to manufacture stoma bags are entirely odour-proof. Unless you are actively changing or emptying your bag in the bathroom, there shouldn’t be any smell escaping. The bags are also equipped with advanced, integrated charcoal filters that slowly release deodorised gas, preventing the bag from ballooning while keeping everything completely discrete. If you do smell something, chances are the filter isn’t doing what it should, you’ve got a leak, or you’ve got a bad batch of bags. I do get this from time to time, but Respond are always on hand to send me another batch of bags quickly, if I contact them.
If you are looking for an extra layer of reassurance to help you feel confident leaving the house, the ostomy community has plenty of tricks. You can use ostomy deodorising drops directly inside your bag between changes and empties, or use an odour neutralising spray when emptying. Over time, as your bag changes and empties become second nature, you will realise that the only person thinking about your stoma in a crowded room is you. Also, everybody poos! Nobody is going to think twice if there is a smell in the bathroom. If you can’t make a smell in the bathroom, then where can you?!
Myth 3: You will have to wear boring, loose clothes forever
Before my stoma surgery, I couldn’t express my love for fashion in the way I wanted to. I struggled to keep on weight, and I didn’t look how I wanted to in my clothes. Especially as a 19-year old going into surgery, this hit me hard. But if anything, I was eager to get my stoma and start being able to work towards putting on weight and keeping on weight, so that I could start enjoying my love for fashion properly.
I am incredibly happy to report that my wardrobe today is better than I ever imagined. You absolutely do not have to compromise your personal style for your stoma. The secret lies entirely in understanding your body shape and experimenting. High-waisted underwear, patterned fabrics, and strategically placed ruching or wraps can completely disguise the outline of a bag, even when it starts to fill up. The secret to my confidence is stoma supportwear.
For everyone, the stoma supportwear choices have more options than ever. From beautiful lace underwear to heavy-duty athletic underwear, there are garments designed to hold your bag snugly against your tummy, preventing it from sagging or shifting. Fashion is all about what makes you feel confident, and your stoma should never hold you back from rocking the outfits you love. Sure, it can take a bit of experimentation, but often, that’s all part of the fun!
Myth 4: Stomas are for elderly people
When I first found out I needed a stoma, one of the loudest thoughts in my head was, “but I’m way too young for this”.
Media representations, standard medical brochures, and outdated societal jokes almost exclusively portray ostomates as elderly individuals. Because of this, being a young person facing surgery can feel profoundly alienating, making you feel as though you’re the “odd one out”. The truth is that bladder and bowel diseases do not look at a birth certificate. People of all ages, from newborn babies with congenital conditions to teenagers and young adults battling aggressive IBD or colorectal cancer (to name a few conditions) live with stomas. By assuming this is solely an “old person’s” condition, we inadvertently isolate a massive, vibrant community of younger ostomates who are navigating careers, dating, university, and more.
Connecting with the online ostomy community completely shattered this myth for me. On platforms like Instagram, there is a fierce, beautiful movement of advocates of every age proudly showing their bags, rewriting the narrative, and proving that a stoma knows no age bounds.
Myth 5: You’ll never feel sexy again
Of all the fears I carried into surgery, the thought that I would never feel my femininity was one of the heaviest. It’s a deeply painful worry that people rarely discuss openly. I wouldn’t if I’d ever feel attractive or sexy.
If you are feeling that exact same ache right now, please know that it absolutely is possible to feel confident and sexy again. Your confidence does not reside in a flawless body. It comes from a real body. When surgery frees you from a life of chronic, debilitating pain, that newfound energy shines through. Many ostomates actually find they feel sexier post-surgery because they are no longer suffering through severe flare-ups, and find it more realistic to keep a stable weight and figure. Feeling sexy again is entirely possible, and you deserve to celebrate your gorgeous, warrior body.
Navigating life after stoma surgery is both a physical and emotional journey. It requires you to completely create (or redefine) your relationship with your body, master entirely new self-care routines, and confront a world filled with outdated misconceptions. It is completely normal to experience moments of grief, frustration, and doubt along the way. Healing is rarely a perfectly straight line, and every milestone, no matter how big or small, deserves to be celebrated.
Looking back at the terrified girl in that hospital bed, I wish I could show her the life I lead today. My stoma didn’t ruin my life. It rescued me from a cycle of debilitating pain and gave me my future. One I wouldn’t have had without it. By openly de-bagging common myths surrounding living with a stoma, we can strip away the “stigma” that keep so many people suffering in silence, replacing fear with community and pride.
If you are currently struggling to accept your bag, please be incredibly gentle with yourself. Give your body and mind the time they need to adapt, and never hesitate to lean on the wonderful, supportive ostomy community around you. You are an absolute warrior, your life is waiting for you, and your stoma bag is simply a small, powerful enabler.
For many, including myself, an ostomy isn’t the end, it is just the beginning!
