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.
That being said, it’s natural to have bad days with a stoma and it’s also normal to grieve for the life you had or wonder you could have had without one. It’s realistic to acknowledge that there will be bad days and that bad days ebb and flow, depending on why you got your stoma and other things that are individual to everyone. No two stories are the same. But every one is valid.
Taking my experience into account, I’m going to talk about things you may consider when having a stoma feels overwhelming, to ease the feeling a little bit and reassure you that you’re never alone.
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.
How things can sometimes feel a little too positive
Don’t get me wrong, I’m the first to shout from the rooftops what my stoma has enabled me to do, but I also like to share the raw, real and tougher reality I do sometimes experience. Because that’s life with a stoma. There can be toxic positivity surrounding having a stoma which can make those who find it tough more regularly alienated and alone.
For some people, having an ostomy can result in little to no problems that follow, but due to the nature of the surgery, this in itself can also lead to other things to deal with. This post isn’t to scaremonger anyone, more so it’s to bring some realism into the forefront for those who maybe do find it more difficult, to show them that it is okay to struggle, and actually, most people who have had stoma surgery do struggle too, at one point or another and in different frequencies.
It often isn’t a “magic cure”
I do find it potentially very damaging that having stoma surgery is often made out to be a magic cure. If I hadn’t had my ostomy, I wouldn’t be here, but I experience problems as a result of my surgery and chronic illness, in my stomach and other places in my body. It’s important to note that if you struggle with things too, even years on after surgery, then you’re not alone.
It’s a process
It can take time to get used to your stoma and managing it in everyday life. There is no set time frame. Everyone is different. There will be frustrations, days where you wonder what to do with products, those days where you feel teary, days where you think your ostomy has a mind of its own and days where you wish you could turn your back on it for a while and shut things off.
You may experience battles with confidence and self-esteem, and you may even experience difficulty in relationships if you feel like those around you “don’t get it”. But I’ve definitely learnt that even if those around you don’t understand, it doesn’t mean they can’t support you. Often, I’ve found it’s been me putting up resistance when really, sometimes it’s about letting people in and valuing yourself enough to know you’re worthy of support, just as you would support a loved one if the tables were turned.
Take it slow, your daily routine will be different to pre-stoma life, but you’ll get to a point where things feel just that; routine. Like brushing your teeth. Changing your bag may feel slow, but it speeds up in time as you find the right products and method for you. It will also take time for you to build your confidence up.
Tip: Use an incontinence sheet when changing. Tuck one end in your knickers and for example, if you change your bag standing at the sink, extend the incontinence sheet in front of you and rest the other end over the sink, so that the sheet can catch any output during your bag change.
Fatigue…and the rest!
Most days, I do so many things I couldn’t without my stoma, and some days, I can thrive. Other days, it just isn’t happening if it isn’t resting. I find fatigue really hard. Definitely one of the hardest things to deal with. I often become anaemic, and this also makes things worse. Thankfully, I have had an iron infusion recently which has really helped.
My stoma has enabled me to get to a level of health where most of the time, I can deal with things without it having too much of an impact on my daily life, but there are periods of time where I find it so hard. Thankfully, the down sides are a lot less compared to the pros, but when they strike, they place a big weight on me.
It isn’t just physical
Stoma life can feel overwhelming. And it definitely takes its toll mentally. I do find it worrying the lack of mental health support I had after my surgery and unfortunately I hear it all too often, although there are people where this has been positively different. It’s a massive change to deal with emotionally. You may feel anger, grief and upset. You may feel reluctance to accept, emptiness and find it hard to express your feelings. You are not alone in this.
I’ve found talking to a professional has been helpful, as well as writing my emotions down and talking to others who have had stoma surgery. You may choose to speak to people you can trust like your loved ones, and speaking to a stoma nurse can also be super helpful, as I’ve found repeatedly since my surgery in 2011.
The emotions themselves can feel so exhausting, and sometimes it can feel a lot harder to accept all these things you feel so you just push them away.
But in my experience, this just makes it harder in the long run. Emotions are human. They’re normal. And anyone in your position would more than likely go through such a whirlwind of them too.
Choosing a simple and easy delivery service
Joining Respond has made my stoma life so much easier. Unless I let Respond know of any changes, they make sure my supplies are delivered each month, without me having to chase or wonder where things are. It’s so reassuring and one less thing for me to think about, especially when things feel overwhelming.
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.
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
● 5 ideas to help you adapt to ostomy life – by me
