When sharing my story online, I try to be as authentic and honest as possible. But the reality is, people are only really seeing the surface layer. The mental and emotional side of living with a stoma is often forgotten about. For me, this was the biggest adjustment – physically I coped very quickly, but I still battle with the mental aspect regularly.
I know every journey is different, so I’m going to share some of the struggles I faces/still face when it comes to living with a stoma. The parts that people don’t always see. I always joke and say I am an amazing actress – but honestly, I give myself credit that I am. There have been days when I feel like I want the ground to swallow me up because I just can’t cope – but no one would know. I get up and power through – because honestly, I have no other choice.
Having a stoma is an ‘invisible illness’, but all the mental battles are also invisible. My worries, self-confidence, anxiety – these are all invisible. On bad days it can be such a lonely battle. I hope the points I highlight throughout this blog can help someone feel less alone.
The emotional adjustment
I have changed since my surgery. Physically, yes – this is obvious – I now have a bag of poo attached to my stomach. But wowza, I have changed emotionally. I would say I have always been a worrier – I mean how do you think I developed a auto-immune disease in the first place? Since my surgery, I have become such an anxious person. I worry about everything, and I put that down to so many things going wrong when it came to my surgery. My first surgery didn’t go to plan so I was required to have another surgery, which I developed a blood clot from and then was sent back to hospital because they thought one of my wounds had turned septic. All VERY stressful to say the least.
So can you blame me from worrying? Often though, this does impact me daily. I sometimes can’t control the worry and it consumes me. It often takes me a while to control my thoughts and remind myself how strong I really am.
The ‘quiet’ mental load
If having to poop into a bag for the rest of my life wasn’t enough – imagine all the BTS that comes with it. People are SHOCKED when I tell them just how much planning and organisation goes into having a stoma. Routine bag changes, ordering supplies, packing emergency kits, meticulously planning journeys to ensure I will be able to manage my bag. All things that people would overlook because I appear to cope well. I can’t tell you the number of times I have run out of stoma bags, not from laziness or forgetfulness – from sheer overwhelm. Sometimes I do struggle to cope. There is so much to think about, and it gets too much. I am lucky to have such a fabulous support system around me that I can lean on anytime. It also helps that I have such an amazing stoma supplier – shout out Respond – whose team are only a phone call away to help with any of my needs.
The anxiety tap – IYKYK
You wouldn’t know it – but I get extremely anxious about my bag filling up when I’m out in public. It’s a vanity reason. I think my bag looks OK when it’s empty – but when it is full it makes me feel embarrassed and disgusting. So I have developed a habit I like to call the anxiety tap. When I’m out in public, I subtly tap by bag to judge how full it is. This helps me stay on top of it getting to full – and therefore helping me feel my best. An empty bag = happy Poppy.
Recovery isn’t linear
I once asked a doctor – ‘When will I stop crying?’. He laughed. Looking back I realise the sadness about what happened doesn’t go away, but you do learn to cope with it better. The crying doesn’t stop – but it becomes less. Now and then, it comes back, trudging up all the bag memories, but as quick as it comes, it goes. I read online that recovery isn’t linear – and it’s a line that has always stuck with me. I don’t ever think my recovery journey will end. I think there will always be battles that I face and overcome. One step at a time.
Coping strategies
The biggest coping strategy for me? Talking. Opening up and sharing how you are feeling. Whether that be to loved ones, a professional or even to randomers online. Talking about my worries/problems helped me overcome them. It made me feel less alone. Bottling things never works, because they become stronger inside until you explode. Opening helps control the anxiety inside. For me, I found it easier to make a joke out of things. I found it made it easier for people without a stoma to broach the subject. And a chuckle is always good for the soul.
Keeping always works for me too. I often find it’s the moments when I’m out of routine that I have a wobble. People always ask me why I’m always on the go – honestly it’s to stop my brain being unkind to me.
I hope that opening up about these things can help someone who is feeling alone. Stoma surgery is huge – and so is the emotional aspect that comes along with it. Every emotion you are feeling is valid. Be kind to yourself.
Love
Poppy xxx
