Having stoma surgery is life-changing, and for many, including myself, life-saving. It also changes your body and your life, but as time goes on, it becomes increasingly more a part of your routine. How you view your stoma can also change as time goes on and it definitely has with me. 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.
That being said, having an ostomy definitely changes your perception of many things in life. Especially when it saves your life.
Taking my experience into account, I’m going to talk about how having my ostomy surgery has changed my perception of things over the years, as well as how I view myself and my ostomy bag.
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.
Changing how I viewed food
Before my surgery, I had such a bad relationship with food. Pretty much everything I ate used to leave me in pain. Even before I ate, if I smelt food I started to feel nauseous and often got stomach ache.
After surgery, it took me several months to “trust” food again and that my body was actually going to be okay with such a wide variety of food, compared to what I could manage before, but as time went on, I’m pleased to say my relationship with food became a much healthier one.
I really enjoy food and even though I still worry about what might cause problems sometimes, having an ostomy has enabled me to appreciate my food and appreciate eating food without pain.
Changing how I viewed my body
Having ostomy surgery has definitely changed my perception of my body. I have never had an easy relationship with my body. Since when I was diagnosed with Crohn’s disease at aged 7, I found my teenage years especially so difficult. Steroids made my face swell and my body, they’d cause bad acne and my weight was constantly up and down on them. When I wasn’t on them, I struggled to put any weight on, and keep it on.
My body has changed a lot since surgery in 2011, and I struggled with it last year and the beginning of this year especially. Developing curves was something I never thought would happen, but I did. Having to think about what I eat and exercising to keep fit has been something again I never thought I’d need to deal with. But I’m in a much better place now with my body, exercise and knowing what foods are good for me and which foods aren’t.
Changing how I worry about what others see
Living with a stoma bag since 2011, it’s safe to say it took me a while to realise that the person who notices it most is me. I always worried I wouldn’t be able to wear jeans or the clothes that I love because I’d worry other people would tell so easily that I have a stoma bag.
I would even worry when I was in shops that they’d think I’d shoplifted if I had a full bag… the anxiety surrounding my bag & how others saw me was high for such a long time.
In reality, the person that was most aware of it & looking for it was me in all those anxious times. Nobody goes around looking at someone’s stomach for a stoma bag. Even those of us who have stoma bags can’t tell if someone else has one.
I’ve learnt over the years that my bag is nothing to be ashamed of. I rarely feel I have to hide it away now such as on a beach on holiday or at a swimming pool, but that’s taken me a long time to get to that point, and that’s okay. However, I feel more confident keeping my bag discreet. That doesn’t mean I’m ashamed. It means it’s what feels right for me. All in your own time & it’s your body, your choice.
Thankfully, stoma supportwear under my workout gear and clothes helps to give me a confidence boost on days where my stoma is more active especially to wear the clothes I love.
Choosing an efficient delivery service
Getting a good routine with my ostomy bag and products has helped me to worry less about my ostomy, which has helped me to see my ostomy in a positive way most of the time. Respond have made my life so much easier with a stoma, because I know I’ll always have supplies. I have regular, repeat orders that they send out without me needing to contact them. Only if I need something changing do I need to get in touch. I get regular updates every step of the way when it comes to my delivery and I don’t need to panic about not having supplies. It’s always great to know when my deliveries will arrive.
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:
- Mental health with a stoma – by Chris
- 12 years since my first surgery – by Maryrose
In summary, having an ostomy is life-changing and perspective changing. There will be good days and bad days. But for many, including myself, an ostomy isn’t the end, it is just the beginning!