The good, the bad and the truth of life with a stoma

The good, the bad and the truth of life with a stoma

Hello all reading this,

My name is Tom, I am 32 and I have had health conditions associated with my stomach since the age of 8. Up to this current day I suffer from mental health problems and have done for a long time - and my way of managing it, as well as describing it, is pretty direct.

Through this blog, I’m going to share my advice and a blueprint of ways in which I’ve been able to make it better – in the hope that this will help others going through the same thing - but ultimately the person who is responsible for controlling how much mental health issues get into your life, habits or relationships – is you. That is the biggest learning.

I am like any human being who has been born and experienced all the major life events that hit you in the face along the way. The main one for me being a colostomy bag.

I have had numerous operations in my lifetime, my mum counts them but I don’t (I’m not a Walter Mitty who wants anyone to feel bad for me), after all, there will always be someone who would give their right arm to be in our position. However, I will tell you that I have had two bags in my lifetime; one I managed really badly, which I will cover, and the current one, which I am trying to correct all my wrongs of the past whenever or wherever I can.

I will start with the bad and finish on the good.

I was unwell from the age of 8 and initially was prescribed a high dose of steroids which, long story short, didn’t work and the end game was a bag and bowel reconstruction. This was the really dark stage of my life and the downfall of what should have been some of my best years. I let all the negative events of my bag in that period of my life ripple into everything, which is very wrong. I let school, friendships and life pretty much blow me by and I have to carry that baggage today.

I have three regrets I carry today and that is the biggest one by far. I wasted time through letting and allowing dark days to take over me and let them carry into the next and so on and so on.

Me being from Yorkshire, I think it’s hardwired into us that we are tight fisted, proud and, most related to this point, stubborn and it was that which is and can be my downfall. I never reached out for help or to better my situation. I think I have blocked out or buried deep down most of my life between the ages of 9-16, however, one event I remember was coming home from school after my bag bursting all over my uniform and I jumped out of my mum’s car whilst it was moving, ripped my bag off at the front door, refused to wear one and sat under the shower for hours… I bet my mum, being from Yorkshire, loved that water bill!! I’m trying to add a light side to the dark story but that’s the point I never want to return to. Ever.

This leads me to the current day and why I am what I am. Why I do what I do to correct everything written in the previous paragraph.

I covered this briefly in the ‘Chatting Sh*t with Ostique’ podcast and I imagine it also features in other blogs, YouTube or social media etc, that a stoma is an invisible condition and needs to be understood better in the wider community. The way we manage our own stomas is very much an individual matter, with input from whoever you choose to listen to or value advice or assistance from. My big bug bear with some people in the stoma community is false stories or continued barrage of negative stories. I can tell you that I had a chance of dying by bleeding out when I had my last stoma surgery and before that too, and I imagine many other people have been in that very same situation. The one thing is don’t do is scream and tell everyone, it doesn’t make me anymore important that you. They will be bad days - accept they will happen today, tomorrow or whenever - but you have to manage them. I swear by positive stories only, as that’s what needs spreading! Too many people give bad stories or advice to young and impressionable ostomates these days and it has a huge negative impact.

When I had my first stoma there was no awareness out, as social media didn’t really have the coverage it has nowadays. We are a community so its all our responsibility to help each other look for advice, support or people’s stories as evidence or hints in how to manage. Unless you go look, ask questions, or discover from experience, things will never change. A bag isn’t the end, its far from it. I can tell you now; I am in the shape of my life, physically and mentally, through getting off my arse and not accepting bad results. I understand what I need from myself to function - do not let anyone else tell you how you should live or feel, you’re responsible for your own self-worth.

I cannot turn back the clock in my life and nor do I want to. I have two beautiful children I love and cherish and I’m doing other amazing and fulfilling things from the path I’ve made, following my hardship, and am happy now.

I see it as a responsibility to stop someone else making the lifestyle choices I made between the age of 9-16 and that’s through being honest and willing to understand life’s not, or will never be, perfect - which is why I tell myself daily that there is always someone worse off. I imagine going back to when I was 9 and to get to theatre in St James you had to go through the children’s cancer ward from where I was situated. You grow up and understand life’s not so bad when you look at it from eyes outside your own really and you appreciate that you should value the opportunity that you have.

The following is a decent blueprint to living well with a bag:

  • Knowing what support is available to you. If not, ask around!
  • Exercise produces positive endorphins - great for improving mood
  • Help others who might be similar to yourself
  • Value good friends
  • Get to the end of the bad day. It’s all uphill following that
  • Get in touch with a charity

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