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.
There are so many things I could talk about when it comes to living with a stoma, as it does impact everything I do. But thankfully the vast majority of these things are good, as Stacey Stoma is part of me now. She’s so embedded into my life that it’s odd to think of life without her. I wouldn’t be here without her.
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.
Stacey, it’s been a journey!
“Journey” might sound a bit cliche, but it’s the truth. Every day I’ve had since stoma surgery has been a day I wouldn’t have otherwise had. That’s something so amazing to celebrate. I have made so many good memories thanks to Stacey Stoma and having a stoma has enabled me to do so many things, but it does come with it’s challenges. Having said that, most of the time those challenges I’d take over the miserable and agonising existence I had before surgery.
The bad days
Talking to others in general, as well as on your bad days can help, especially those who have had stoma surgery. I’ve made so many friends online who I can talk to, and I’ve felt far less alone in my worries ever since. I’ve had the blessing of meeting some of these amazing people in my life and the feeling of being in a room full of people who just “get it” is so therapeutic and wholesome. It’s a frequent reminder that you’re not on your own and having bad days with a stoma is natural. But the good days will come around again.
What 19-year-old Amy needed
But it’s a walk in the park that I can join and enjoy, 95% of the time. Even if that’s with fatigue, scar tissue pain, or with a grumbly Stacey Stoma. It makes me feel so empowered and free. I have just completed my first ever 10k running event, and it felt amazing! It was hard, but I’m so glad that my body allowed me to do this.
It isn’t the end…
Bad days are natural with an ostomy and happen in different frequencies and severities who have had stoma surgery, whether for a temporary or permanent stoma. If you have a bad day, it’s okay. Things will get better and it’s so important to go gentle on yourself where you can. I’ve found that if I try and push away the bad feelings, it only makes them worse. Sometimes I find it helps to write it down, if I can’t move from my bed, or watch something that makes me smile like a familiar Netflix program. Dog cuddles are an amazing pick me up too!
Talking to someone
Throughout my journey since stoma surgery, I have tried to go about ostomy life as the person I needed to see, coming out of life-changing and life-saving surgery. Social media was only just becoming more of a “thing” along the lines of Facebook support groups then, and I know that Amy then would have got so much comfort and reassurance out of seeing Amy now. Knowing that the tough times would come, but that she was going to achieve things that had only been in her wildest dreams before. Without pain, without being held back, without feeling constantly depressed. Feeling empowered and wanting to help others feel the same.
Life with an ostomy isn’t a walk in the park…
It’s just the beginning. For me and so many others. You’re not alone. Physically and mentally, it can be hard. But I believe in you, and there’s always someone out there you can talk to, who understands and will be happy to listen.
Respond’s useful advice and support
Respond have a blog full of posts from other ostomates on their website. Some related blog posts are:
- My journey to acceptance after stoma surgery – by Maryrose
- Adapting after stoma surgery – By Mohammad
Having stoma surgery is such a personal thing. No two stories are the same. It’s important to remember that you’re not alone and to always speak to a medical professional such as a stoma nurse if you have questions and/or are struggling.
You can message me and follow me on my stoma journey on Instagram: @ibdwarriorprincess