Navigating food with a stoma

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From liquid diets to food freedom

Living with a stoma is an experience that not many people understand unless they’ve been through it themselves. For me, it was a journey full of challenges, adjustments, and eventually freedom. In the early days, I had no idea how my relationship with food would change. Between feeding tubes, liquid diets, and carefully planned meals, eating became less about enjoyment and more about survival. But after years of living with a stoma, I’m happy to say that I now have a varied diet and can eat what I want, within reason.

If you’re reading this and you’ve just started your own stoma journey, or if you’re a curious bystander wondering what life with a stoma is like, let me take you through my experience.

The early days: dieticians, restrictions, and liquid meals

The first few weeks after my stoma surgery were overwhelming. I was introduced to a whole new way of life, and the idea of eating as I once did seemed distant. During this time, my dietician became a huge support. Their expertise was invaluable, guiding me through what I could and couldn’t eat to avoid complications. My diet was incredibly restrictive – primarily liquids and soft foods designed to be gentle on my digestive system.

This phase required a lot of patience. Having a feeding tube or relying on nutrient-dense liquid diets might sound daunting, and it was, but it was also necessary for my healing. It taught me the importance of nourishment in a new, practical way. Food wasn’t about indulgence anymore; it was about fuel and recovery. One of the huge difficulties I found was preparing my children’s food and not being able to eat it, in that moment in time chicken nuggets and smiley faces had never looked so appealing.

Learning my limits

As I began to heal and adjust, my diet started to expand—slowly but surely. It wasn’t an overnight process, and I had to learn what my body could handle in its new state. Foods I once loved didn’t always agree with me anymore, and I had to be careful to avoid blockages or discomfort. It was all about trial and error.

Working with my dietician was key during this time. They helped me introduce new foods, while keeping a close eye on portion sizes and the types of textures I was eating. For example, foods that were high in fibre, like raw vegetables or whole grains, were a bit risky early on, so I had to introduce them gradually. Hydration also became more crucial than ever before, and my good old friend Dioralyte.

Embracing food freedom

After years of adapting to life with a stoma, I’m grateful to say that I’ve reached a point where I can eat a varied diet. While I still keep moderation in mind and pay attention to my body’s signals, I no longer feel restricted by my stoma. Whether it’s a hearty sandwich or a bowl of pasta, I can enjoy meals that once felt out of reach.

Of course, there are still some foods that don’t always agree with me, but I’ve learned to adjust. Eating smaller portions, chewing thoroughly, and drinking plenty of water are second nature now. But the important thing is, I no longer feel like I’m missing out.

Finding balance

Living with a stoma doesn’t mean giving up on the pleasures of food. It means finding a balance that works for you. For me, that balance comes in the form of moderation. I can have the treats I enjoy—just in smaller quantities or with a bit more mindfulness. The occasional indulgence is no longer off the table, and that’s something I cherish.

My advice to others

If you’re new to living with a stoma, take it slow. Listen to your dietician or stoma team and pay attention to how your body reacts to different foods. The process can feel frustrating, but with time, you’ll find your groove. There’s light at the end of the tunnel, and trust me, you can get to a place where you can enjoy a wide variety of foods again.

Living with a stoma is a journey, and while it comes with its unique challenges, it also teaches you resilience, patience, and gratitude for the small pleasures—like enjoying a meal.

Take it from me: it gets better, and food can be part of your joy again.

Kevin
@thestomaguy

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Mental health with a stoma

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Disclaimer: This information within this blog focuses on mental health and depression while dealing with chronic illnesses which may be a sensitive topic to certain viewers.

Living with a stoma to me feels like more of a mental battle than a physical battle. My mental health has had quite a rocky ride during all my years with a stoma and without. The connection between the mind and the gut is a vicious circle, the chemicals in the gut affect brain development and bowel disorders can cause an imbalance leading to diagnoses such as anxiety, depression, and can also be linked to autism and schizophrenia.

My earliest memories of having a stoma were my mental struggles, I had low self esteem and no body confidence at all. My mental health made me look like I was a badly behaved child in the comfort of my own home, but I was just really struggling through life and couldn’t make sense of my feelings. I wish my mental health struggles were picked up by someone when I was younger, I did receive some counselling as a child and teenager, but I felt it was more anger management, I don’t remember anyone really understanding why I was behaving the way I was.

I was always told how strong I was for going through so much and how resilient I am. It made me feel like I had to remain strong, and I couldn’t admit to my real feelings. I had a lot of survivors guilt which made me feel like I had to be happy the way I was and I had nothing to complain about. Having a rare condition made this very hard because I could not relate my feelings to anyone else.

My anxiety increased quite significantly during the time I was reversed. My bowels made a lot of noise, so much that I would sometimes leave a classroom in tears from embarrassment. This is where the gut, brain cycle got me the worst, my anxiety would set my tummy off which in turn would make me more anxious.

After my stoma surgery in 2022, I felt isolated again. I was so pleased to have my stoma back but I just felt really down and restricted. The week of my surgery I was supposed to start working as a midwife having just qualified. I couldn’t go to work as I was recovering, so I missed out on the induction period, I felt sad watching everyone else progress with their lives whilst I was at a standstill.

It’s only as an adult I realised how much my mental health had control of me. In March of 2023 I had an awful time with my mental health, everything that had changed in my life started to catch up with me. I started to question everything and couldn’t get my head around why everything happened to me as a baby.

Improving my mental health

I have anxiety and have suffered depression; I also have PTSD from all the medical trauma I have sustained. I felt that each time I engaged with my GP I was just given medication, this helped sometimes but I don’t want to live the rest of my life relying on tablets to feel stable. I started to realise there are things I need to change to help myself through life.

I attended a counsellor through a scheme at my work. She really pulled all of my trauma to the surface and made me realise the feelings I was hiding. Talking to someone who I didn’t know really helped me. I tend not to complain or tell friends or colleagues how I am feeling I usually just try and get on with it but to express all my emotions to someone I did not know helped me feel safe and not judged.

Tiredness is my biggest trigger, naturally with having a high output ileostomy that’s pretty hard to combat. I have recently changed my working hours and this has significantly improved my mental health, I now work regular hours rather than shifts. I get a full night’s sleep very night and work close to home.

I have always had regular mood swings, but this is usually just because I’m ‘hangry’, I’ve learned to keep myself well hydrated and to snack regularly to try and prevent this.

Talking to other people had my condition has really validated my feelings and setting up stoma support groups has allowed me to help others going through similar feelings to myself.

I am still trying to get to grips with my mental health, every day I have a wobble, some days worse than others but my mental health has definitely improved now I have my stoma back. I feel more at peace with life and my stoma.

Anna
@what.happened.nec.t 

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Exercising with a stoma

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I love any type of sport but swimming and running are my favourites.

Its completely understandable that sport can feel challenging with a stoma due to confidence, anxiety, worry and many other feelings, but it can have amazing advantages. Just getting outside can lift your spirits and it’s a really good way to socialise. So many endorphins are released during exercise and in a time where your body has gone through such a change it can help build strength and body confidence by showing how strong you still are.

Swimming was my first sport; I’ve loved being in the water for as long as I can remember. I never thought anything of swimming with a stoma, it’s something I have always done. It was only when I heard of someone being rejected access to a pool because of their stoma I realised how having a stoma and swimming can be so daunting

I have never done anything special to swim, I tend to just make sure the bag I have on is secure and empty but it’s ok if it starts to fill up in the water, it wont leak. I choose to wear a colourful, usually patterned costume to disguise the bag outline. I don’t wear extra support; I find costumes have good support anyway, but many companies sell adapted swimming costumes.

I love to swim anywhere, in a pool, in the sea, I enjoy hot tubs and waterslides. Stoma bags are waterproof and robust so they can cope with all these situations very well.

I used to be competitive and competed at national level whilst having a stoma but now I take part in sport for fun.

As the years went by after my reversal, all my symptoms made it very hard to participate in sport particularly running. After about a kilometre I would feel like I need the toilet and couldn’t push myself too hard in case I had an accident. I’m so grateful now that I can run as long as I like without having an emergency toilet stop.

For 11 years now I have been taking part in parkrun, Saturday has been known as parkrun day since then! parkrun is for everyone, it is so inclusive and accessible, I love being able to go each week, put on my music and just not have to think about anything else for an hour or so. After my ileostomy surgery I was so looking forward to getting back to parkrun and being active has helped my recovery massively!

This month I completed my 400th parkrun, I’m so proud of this achievement and it has made me realise how important just turning up is, I’m not fast I just enjoy going each week. Sport is for everyone, you don’t have to be training for something special or race competitively, I do it for fun now and have made some really great friends.

Through all my health problems sport has given me something else to focus on, I am able to switch off for an hour or so a day and just enjoy my surroundings. I really feel that being active has helped me get through some hard times. My mental health has improved so much through sport, it gives me a routine, a hobby and makes me feel good about myself.

Anna
@what.happened.nec.t 

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World Ostomy Day 2024

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Mark your calendars – Saturday, 5th October is no ordinary day. It’s World Ostomy Day! This is the day when we raise a toast to our amazing ostomy community and shine a light on the superhero stomas that keep life flowing.

So, what’s World Ostomy Day all about?

World Ostomy Day is a global celebration dedicated to raising awareness and smashing those old-fashioned taboos about ostomies. Every three years, we pull out the party hats to educate the public, share stories, and give ostomates a well-deserved round of applause for their resilience.

We’ve even created a special video just for the occasion! You’ll hear personal and inspiring stories from our ambassadors, who, like many others, faced numerous challenges before having their stoma and how this life-changing surgery has transformed their lives for the better.

Why does this matter to you?

First off, because stomas are lifesavers. Literally! An ostomy is a surgical procedure that diverts the body’s waste, whether that be stool or urine, out through an opening in the abdomen when part of the intestines or bladder needs to heal or be removed for many reasons including bowel disease and cancer. While it might not sound glamorous, for those living with a stoma, it is life-changing in the best way possible. But let’s be real – adjusting to life with a stoma can be a wild ride, and World Ostomy Day is here as a reminder to say, “you’ve got this!”

Understanding ostomies is crucial – not just for those directly affected, but for friends, family, and society at large. By learning about the life-changing benefits of ostomies, we can all contribute to reducing stigma and supporting those who bravely navigate life with a stoma. This is an opportunity to foster compassion, build community, and ensure that everyone feels empowered to live their best life. It’s a day for everyone!

How eakin® has your back

Here at eakin®, we’re on a mission to make life with a stoma a breeze. Our Cohesive® seals and freeseal®, are designed to keep leaks at bay and comfort levels sky-high. Because we believe ostomates shouldn’t have to compromise between living life to the fullest and staying comfortable.

Plus, we’re all about education and advocacy. World Ostomy Day isn’t just about raising awareness; it’s about building a community where no one feels like they’re going through it alone. We support initiatives that ensure ostomates get the care and respect they deserve, and we’re here to help anyone who needs a hand (or seal, or bag – take your pick).

Get involved – let’s make some noise!

Here’s how you can get in on the action:

  • You can join us by celebrating the ostomy community over on our socials where we would love to hear your stories and experiences. Whether you’re just starting out or have been embracing your stoma like a boss for years, your story matters. These are the stories that break down stigmas, change perceptions, and show us how to live life to the fullest – no matter what challenges come our way.
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  • #WorldOstomyDay is where it’s at! Hop on social media and a give a shoutout to the amazing ostomy community.
  • Be an advocate! Whether it’s pushing for better healthcare access or just explaining what a stoma is to a curious friend, you can make a difference to those living with a stoma every day.
  • Check out our blogs section written by ostomates, for ostomates, to find insights and experiences shared by our community!

So, there you have it – World Ostomy Day is your time to celebrate the brilliance of stomas and the incredible people living with them. Let’s make some noise, have some fun, and remind the world that ostomates are unstoppable on this day and every day!

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Bathing, showering and swimming with a stoma

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The first time I attended the spa with my stoma bag I was feeling very overwhelmed, I had myself worked up thinking that my stoma bag would cause me so many issues.

However, I applied a fresh bag that morning and added extra security with flange extenders, I was in the jacuzzi and swimming pool and didn’t have to think twice about my bag as it was sticking securely. I was amazed at how secure it was under water.

I find bathing and showering with a stoma to be straightforward. The bags are designed really well, they’re water proof and the material dries quickly.

I was recently on holiday and didn’t hesitate about going into the pool or sea with my stoma bag. Your first positive experience of having your bag in the water gives you the confidence boost that you need.

My top tips would be to apply a fresh bag, and add extra security with the Respond flange extenders and of course, always carry a spare bag and supplies just incase!

Ayesha
@ayeshaduffy

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Flying with a stoma

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Whether it’s somewhere local or a holiday abroad your stoma shouldn’t stop you.

Travelling can be stressful enough at times, particularly in airports. The 3am alarm, navigating the huge car park, quickly rearranging luggage when it’s slightly over the allowance, we have all experienced the fast-paced walk to the gate only to stand there for another hour!

Having a stoma has allowed me to travel to so many different places and I am so grateful for this but I have to admit I do find air travel the most stressful out of all the modes of transport.

I don’t mind going through security, a lot of the time I was only ever pulled up at random, however, since body scanners have been introduced, I have been pulled up every time. It’s not so bad now I am used to it, but it can be quite frustrating loosing time that I had originally planned to relax in. Although I always tell the staff that I have a stoma and I am happy for them to search me in public, I have always been taken to a private room. I have had quite mixed experiences from staff members, some have had family members with a stoma whereas one asked me if my stoma was on the wrong side!

I have always found airport facilities to be great, the few times I have had to change my bag either in the airport or on the plane I have never had any issues. I always take spare pants with me just in case and make sure my supplies are accessible.

My advice

I usually pack three to four times the amount of supplies I would use in the length of time I am away for, a week’s holiday I usually just take my whole order with me!

Organise special assistance – don’t be scared to ask for extra help, you deserve to have a stress-free holiday so any little helps. I did this and actually ended up on a private minibus to my plane instead of struggling to balance on the bendy buses. This also means you can cut the queues at the airport which is such a positive when your bag tends to fill quite quickly.

Most of my trips/holidays are quick weekends away so I usually only take hand luggage anyway but if you are planning to take a suitcase for the hold, I would always recommend taking your supplies, or at least half of them in your hand luggage just in case your hold luggage goes missing.

I often book trips at the last minute, so I tend to use budget airlines which of course means I don’t get much baggage allowance. Most Airlines offer an extra bag of hand luggage for medical supplies meaning you can take everything on board without losing space in your carry-on bag.

Leave extra time for security just in case you are pulled for a search, even if you get through quickly, it just means you get extra time to get a drink and watch the planes go by.

I always try to get on the plane last if possible so I can use the bathroom just before I get on, sometimes waiting to taxi can be a while and often the on flight toilets don’t open until the plane reaches cruising altitude. This alleviates my worries of my bag filling up too much before we are airborne.

Being sat in the middle seat gives me the most anxiety but unfortunately with budget airlines you usually must pay to pick a seat so sometimes I’m happy to just put up with it to save money. If I am on a longer flight in the hope of claiming an aisle seat that may be spare, I tend to tell the cabin crew that I have a stoma and may need to use the bathroom regularly.

Speak to the customer support staff prior to checking in for your flight, some airlines will allocate seats on the aisle and near the toilets without a fee and this also means your family can sit by you without having to pay any extra.

Keep well fueled and hydrated, I take most of my food with me for my journey in my hand luggage, so I don’t have to rely on airport food and I always take a reusable bottle with me to fill up at the water stations.

Now go and enjoy the duty free!

Anna
@what.happened.nec.t 

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Stoma misconceptions

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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.

Kevin
@thestomaguy

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Confidence with a stoma

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Being confident with a stoma can be tricky, and I am still navigating the process myself. Pre-surgery I attended the gym regularly, ate clean, was confident within my body, and wore anything I wanted without a second thought.

In the early months of having my stoma I felt like I would never have the same level of confidence again, I never thought I would look the same or dress the same, but I was so wrong. My ileostomy bag has given me a new lease of life and I appreciate everything so much more than before. I am so grateful for eakin and their amazing products, as well as Respond’s fast and efficient delivery service! eakin freeseals, adhesive wipes and 3-in-1 Refresh spray keeps my skin well nourished and in healthy condition. 🙌🏼

Recently I went on my first holiday abroad with my stoma, because I was confident in the supplies and products I had with me, I was confident I would not have any issues, allowing me to be more confident in myself. I never was someone who liked being centre of attention or standing out of the crowd but without choice, my stoma makes me different from the average person.

I dressed whatever way I wanted on holidays and wore a bikini every day. You just have to work with what you’ve got, all bodies are beautiful!

Wear that bikini, post that selfie, and give your body the self love that it deserves. 📸✨

Ayesha
@ayeshaduffy

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Embracing life with a stoma

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Embracing life with a stoma: A journey of body confidence and intimacy

Life has a way of throwing curveballs when we least expect them. For me, that curveball was a stoma. I remember the day the doctors told me about the surgery. The fear of the unknown loomed large. How would I look? How would my wife react? Could we still have the same intimacy? These questions weighed heavily on my mind.

The early days: Grappling with change

Post-surgery, I found myself standing in front of the mirror, staring at my new reflection. The stoma was there, a constant reminder of my altered body and a thought of a part of me that should be on the inside is now very evident on the outside. At first, it felt like a foreign entity, something that didn’t belong. I was uncomfortable, both physically and emotionally. Dressing became a chore, and each glance in the mirror was a reminder of how much my body had changed.

My confidence plummeted. I worried about my wife’s reaction. Would she still find me attractive? Would our relationship suffer because of this? The thought of intimacy filled me with dread. I was afraid of rejection, of her seeing me differently. These fears gnawed at me, making it hard to even talk about my feelings.

The turning point: Open conversations

One evening, We talked for hours I shared my fears and insecurities, and she shared hers. She admitted she didn’t fully understand what I was going through but reassured me of her love and support. That conversation was the turning point.

Understanding that my wife was on this journey with me, not as a bystander but as a partner, made all the difference. We started researching together, learning about stomas, and finding ways to manage it. This knowledge empowered both of us. It wasn’t just my burden anymore; it was ours to carry together.

Building confidence: Day by day

Building confidence with a stoma is a gradual process. I started with small steps. I invested in stoma-friendly clothing, which helped me feel more comfortable and less self-conscious. Finding the right ostomy supplies was also crucial. I began to experiment with different products until I found ones that suited my needs.

Exercise became a significant part of my routine. Initially, I was hesitant, fearing that physical activity might cause complications. But with medical guidance, I found exercises that worked for me. As my fitness improved, so did my confidence. I felt stronger and more in control of my body.

Rediscovering intimacy: A new normal

Intimacy after a stoma surgery is different but far from impossible. It requires patience, understanding, and a willingness to adapt. My wife and I approached it with open communication.

It wasn’t always easy. There were moments of frustration and awkwardness. What we need to remember is that intimacy isn’t just physical; it’s emotional and mental as well. Simple gestures, like holding hands or a gentle touch, became more meaningful. We discovered new ways to connect and express our love for each other.

Acceptance and beyond

Living with a stoma has taught me a lot about acceptance and resilience. It’s not just about accepting my body; it’s about embracing the new me. It’s about recognising that my worth isn’t defined by a surgical procedure but by who I am as a person.

My wife’s unwavering support has been a cornerstone in this journey. Her acceptance and love have helped me see beyond the physical changes. Together, we’ve navigated this path, finding strength in each other.

Final thoughts

If you’re living with a stoma or facing a similar challenge, remember this: it’s okay to feel uncomfortable and unsure. It’s okay to take your time to adjust. Surround yourself with supportive people, communicate openly, and take small steps towards rebuilding your confidence.

Life with a stoma is different, but it can be fulfilling. It’s a part of my journey, a testament to my resilience, and a reminder of the strength of love and partnership. Embrace your new normal, and remember, you are not alone.

Kevin
@thestomaguy

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Learning to accept your stoma

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My stoma acceptance journey

Having had two stomas, I have had two very different acceptance journeys. I didn’t ever accept my first stoma, you could say I tolerated it and learned to live with it, but I don’t think I ever accepted it.

There were many factors leading to not accepting my first stoma. I couldn’t understand why I had to have one and I didn’t know anyone else with a stoma for a long time, so I felt very different. I struggled and believed I had to hide my bag from everyone, I was so scared I would be bullied at school.

During my 10 years of being reversed I realised that every symptom I was putting up with was much worse than all the things that used to bother me when I had a stoma.

Prior to returning to stoma life, I did have some negative comments about how a bag would affect my life, one I particularly remember was someone asking why I would want one and once I got one how would I ever find someone to marry me. This comment made me realise that I was never the problem, but it was the worry that other people wouldn’t accept it and their attitude towards it.

Getting a stoma isn’t easy for anyone, even those who choose to get one. It is a huge life change and often can feel like a grieving period for the life you had beforehand. I have had times I grieve for what I could have had, I don’t know what life could have been like without a bag with a full amount of bowel.

When I woke up from my most recent surgery, I just had a sense of relief. I didn’t even have to accept my second stoma; I just knew it was a part of me and I had my life back. I was so excited to try out new bags and products and I couldn’t wait to finally get a photo with my bag showing, (there are no photos at all with my previous stoma bag).

I find it easier to tell people I have a stoma now. Being different is celebrated now whereas 13-year-old me did everything they could to be ‘normal’.

I have found it much easier to accept a stoma than to accept a life where I have accidents after not making it to the toilet on time and a life where I am in pain. Don’t get me wrong, it can still be really challenging mentally but most of the time I am very grateful.

My advice

My biggest advice would be to enjoy life, there is so much you can still do with a stoma, don’t let it hold you back. Admittedly it does take some adaptation and days out can take slightly more planning but don’t over complicate it. Some days you will get caught out, but you will learn to laugh and adapt quickly.  

Hiding my bag for so many years didn’t help me, I haven’t had any negative comments at all since getting my stoma two years ago and this just shows how much of this way of life is mental. I learned how empowering it can be to speak to others with stomas and how much this can help to raise awareness, you would be surprised at how many people close to you know someone who has had a stoma.

I was very lucky as looking at my stoma and changing my bag did not frighten me but if this is something you are worried about then just take your time, the stoma nurses are there to help until you feel comfortable changing your bag yourself.

Everyone is different and everyone will react differently to having a stoma and that’s okay. Let me just say it is okay to not accept your stoma, I didn’t for 13 years, and I never feel guilty for it. Nothing could have made me accept my first stoma, trust me we tried EVERYTHING! I now accept my stoma second time around after seeing the alternative option and I had to go through a lot in my 10 years of reversal to get to this stage.  I still don’t accept what happened to me causing me to have a stoma, mentally I still have some way to go with that, but I accept it is on my body and I embrace my life now and all the good things a stoma has given me.

Anna
@what.happened.nec.t

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