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Some of the most common misconceptions about life with a stoma
When you hear the word “stoma,” it might bring up certain stereotypes or assumptions as it certainly did when I first knew I was going to have one. I, aswell as many others, either have or had an outdated or incomplete understanding of what it means to live with a stoma, which can lead to a variety of misconceptions. In reality, stomas are much more common than you might think, and people of all ages and walks of life can have one, but there are lots of questions and thoughts you have when you are first told that you will need to have a stoma and I certainly did have many misconceptions.
In my blog, I wanted to highlight some of the most common misconceptions about stomas and explore the realities behind them. Whether you’re curious, newly diagnosed, or know someone with a stoma, understanding the truth can help break the stigma surrounding this important medical procedure.
“Only elderly people have stomas”
Reality: Stomas are not exclusive to any age group. Many people assume that having a stoma is something that only affects the elderly its certainly what I thought, but this is far from the truth. People of all ages including infants, teenagers, and young adults can require a stoma due to various medical conditions.
Stomas can result from surgeries related to Crohn’s disease, ulcerative colitis, cancer, birth defects, or traumatic injuries, all of which can impact people across the age spectrum, and for many, it’s simply a part of our life that allows us to live fully and healthily.
A stoma means you’re chronically ill”
Reality: A stoma can improve health and quality of life. For some, a stoma is seen as a sign of permanent illness or a loss of independence this was definitely what I felt. However, for many people including myself, a stoma is the result of a procedure that restores health and provides relief from chronic conditions. It’s often a life-changing solution that helps people regain their freedom from pain, discomfort, or life-threatening complications and in my case endless trips to the toilet.
Rather than a symbol of illness, a stoma is often a solution that enables people to live active, healthy lives without the debilitating symptoms they previously experienced.
“A stoma will stop me from having an active lifestyle”
Reality: You can still lead a highly active life with a stoma. Many people believe that a stoma will hold them back from sports, exercise, or other physical activities. However, this is simply not true. After a period of recovery, most people with a stoma can participate in all kinds of physical activities, from swimming and running to weightlifting and yoga and even as I did in 2023 took on London Marathon.
In fact, many professional athletes and fitness enthusiasts live with stomas and continue to compete at high levels. With proper care and attention, a stoma should not stop anyone from living an active life, it may just take time to adjust or need a little perseverance, but it should never stop you from doing the things you love.
“Everyone will know I have a stoma”
Reality: Stomas are usually discreet and unnoticeable. One common worry people have when they learn they’ll need a stoma is that it will be obvious to others, this is how I felt and the questions I had around what will people say? can they see it? can they smell it? The truth is, modern stoma bags are designed to be as discreet as possible, and in most cases, people can wear normal clothing without the stoma being visible.
In addition, many people with stomas choose not to share this information unless they feel comfortable doing so. For the most part, no one will know unless you tell them, as the bag and stoma are usually hidden underneath clothes.
“You can’t eat normally with a stoma”
Reality: While dietary adjustments may be needed, most people can eat a wide variety of foods. Dietary restrictions after stoma surgery often depend on the underlying condition and how the body adapts. While it’s true that immediately after surgery, some foods might need to be avoided, over time most people are able to reintroduce many of their favourite foods back into their diets.
Dietary adjustments are often based on individual tolerance, and many people with stomas eat a balanced and varied diet. With proper guidance from healthcare professionals, the majority of people with stomas can enjoy a wide range of meals without issue.
“A stoma is permanent”
Reality: Some stomas are temporary, depending on the medical condition.
While many people assume that a stoma is a lifelong condition, this isn’t always the case. Some stomas are temporary and are put in place to allow certain parts of the body time to heal. For example, in cases of bowel surgery or trauma, a temporary stoma may be reversed once the intestines have healed.
Of course, for others, a stoma may be permanent, but even then, it can still offer a tremendous improvement in health and quality of life.
“A stoma will limit my social life”
Reality: With the right support and mindset, people with stomas can have thriving social lives. Concerns about body image, social stigma, or feeling “different” can make some people with a stoma feel self-conscious or worry about their social lives. However, these concerns often fade with time. Many people with stomas continue to date, go out with friends, and engage in a vibrant social life.
Having a supportive network, whether friends, family, or stoma support groups, can make a huge difference. Confidence grows as people learn to manage their stoma and see it as part of what makes them unique, but not a defining characteristic.
“Living with a stoma is unhygienic”
Reality: With proper care, a stoma is no more unhygienic than any other medical device. Some people mistakenly believe that having a stoma leads to poor hygiene or a higher risk of infection. In reality, with the right care routine, a stoma can be kept clean and free from issues. Modern stoma bags are designed to be secure, odor-proof, and easy to maintain, making them a hygienic solution for managing waste.
Regular cleaning and changing of the bag are part of the routine, just like any other personal hygiene task. People with stomas can lead perfectly clean, healthy lives.
Breaking the stoma myths
Living with a stoma is often surrounded by myths and misconceptions, but the reality is that it allows many of us to live fuller, healthier lives. Whether the stoma is temporary or permanent, it’s not a symbol of limitation, but of adaptability and strength.
By highlighting these misconceptions, we can foster a better understanding and create a more supportive environment for those who live with stomas. With the right mindset, education, and support, life with a stoma can be fulfilling, active, and empowering.