Having stoma surgery is life-changing, and for many, including myself, life-saving.
I’ll briefly set the scene and give you the background info. My stoma, ‘Stacey’, was formed in 2011, when I was 19 years old. I needed her due to severe Crohn’s disease (a form of Inflammatory Bowel Disease (IBD)) and due to a large, benign tumour on my colon, the size of a watermelon. Surgeons didn’t find this until they operated. If surgeons had left things even a few hours, I was told I wouldn’t be here, so she literally saved my life.
January often brings a time of reflection, especially when it comes to ostomy life. For me, it’s sitting back and being grateful for what my ostomy has allowed me to do, but also being gentle with myself knowing that it’s okay and completely natural to have bad days.
In this blog post, I’m going to talk about my ostomy journey over the last year and also offer ideas for brightening up what often seems like the gloomiest month of the year.
Please note that this is with regards to my experiences living with an ileostomy and using a one-piece, drainable ostomy bag. Let’s get started.
2024 – what ostomy life looked like for me
Developing a better relationship with exercise
2024 saw me form a healthy relationship with exercise and the gym. This is a huge achievement for me. I started back at the gym after taking a few years out (no fault of my ostomy) in April, and nearly a year later, I’ve kept a good routine with this. I go to the gym twice a week, and also run and have recently decided to set my intentions right for the weekend with attending an early morning yoga class on a Friday at my gym too.
Finding a combination of products that works
2024 definitely brought me some hurdles with ostomy life which are ongoing, but most days (even the bad ones), I felt super thankful for being alive, all thanks to my ostomy. I can go about my life relatively problem free if you compare it to the miserable existence I had post-surgery, and my life doesn’t revolve around having to know where the nearest toilets are and wondering if today is going to be the next day I have an accident.
Thankfully, my bag leaks have been second to none. It’s so important to bring up here that if you haven’t quite found the combination of products for you, that you will. There is so much choice out there, even more so than the choice I had post-surgery, early days in 2011. Respond have some great products to simplify your ostomy routine, including the eakin freeseal® which have helped me with forming a secure ring around my stoma when my skin has been slightly sore. The eakin freeseal® range has recently extended for range of different stoma shapes and sizes. You can order your free sample here.
Amazing memories with my loved ones
Having an ostomy has definitely enabled me to enjoy precious time with my loved ones in the last year, making so many good memories. It’s enabled me to explore new places with my husband and our dog, attend many gigs (I adore music), sing live and go to my singing lessons, enjoy taking a dip in the sea, find many cute, coffee shops, and make the most of life.
I have also made some more great memories with those I have made amazing friendships with through having an ostomy. The ones who truly get it because like me, they’ve had ostomy surgery too. I really treasure those friendships.
Enjoying food and drink
2024 brought me another year of being able to eat and drink so many things without pain. Because of a narrowing behind my stoma and at skin level where my stoma comes out my stomach, I’ve had to test and trial and adjust my diet for some periods in the last year, which is ongoing, but generally, I can eat healthily and also enjoy a good takeout!
Before my surgery, food was one of the worst enemies for me, and brought me nothing but pain, nausea and sadness. Now, it mostly brings me energy, the right fuel for my body, happiness and a feeling of fullness which I will never take for granted.
Ideas for celebrating your ostomy
Making time for movement, inside or outside
Even simple things like going on a walk outside are great ways to celebrate what your ostomy has enabled you to do. If, like me, you were really poorly before your ostomy surgery, then something that may seem so simple like stepping outside may have felt like something you could only dream of at one point. Being able to move my body, thankfully most of the time free of pain, is something I will always cherish and never take for granted.
Journaling
I have recently started journaling for a few minutes at the start and end of my day and write down three things I am grateful for. So many of these things may seem simple, but thanks to my ostomy making them possible, writing these things down helps you to see that even on the bad days, there were little glimmers of light.
Making time for self-care
Self-care is something that I definitely have taken for granted before and not set time aside for. With the business of life and when my mental health has been a struggle, I’ve let self care slip, when really, this was when I needed it the most. I use my diary to help me see when I can take time out in my busy weeks for me, whether that be a cosy night in, making time for exercise, reading, having a warm, bubble bath or cooking some nice food. Making myself more of a priority has definitely helped me altogether. It’s actually enabled me to keep on top of my self care more. And my health in general, both physical and mental has really benefitted.
Creating a memory jar
Every time you’re grateful for something, big or small, use some of those examples and write them on a piece of paper. Fold the paper up, put it in a memory jar and in a year’s time, read them back. Alternatively, keep building on the things in the jar and when you’re having a bad day, look back on some of the things in the jar, and know that things will get better.
Choosing a simple and easy delivery service
Joining Respond has made my stoma life so much easier, and has enabled me to celebrate my ostomy more because it empowers me to be in control and know that I’ve got a routine that promotes enjoying life with an ostomy. Having a regular delivery really helps with this. It’s so reassuring and one less thing for me to think about, especially when things feel overwhelming.
Signing up for Respond also means you’ll also receive their Connect magazine, which is full of handy tips, advice and reassuring words of support from those who have had stoma surgery. They also have complimentary items available such as a handy travel bag for your ostomy supplies.
Respond’s useful advice and support
Respond have a blog full of posts from other ostomates on their website. Some blog posts in their lifestyle section are:
- 5 ideas to help you to adapt to life with an ostomy bag – by me
- How the right stoma products can give you confidence – by Keith
In summary, the last year of ostomy life has seen way more good days than bad.
Everyone is different, but it’s important to remember that it’s such a personal journey for everyone who has stoma surgery. Every experience is valid. Every feeling matters. But there are so many other people out there who understand and are willing to help you, including myself.
For so many, including myself, having an ostomy wasn’t the end. It was just the beginning.
You can message me and follow me on my stoma journey on Instagram: @ibdwarriorprincess
