Why I have decided to speak up about IBD and ostomy life

I’ve decided to write a blog about this as during a recent radio interview I was asked why all of a sudden I have decided to publicly raise awareness about IBD and ostomy life, after keeping it to myself for eight years.

In response to the radio presenter I gave a pretty bland answer along the lines of how I now want to ‘share my experience and help others facing similar challenges’. Although this statement is true, there is more to it than that which I would like to use this blog to explain.

What better place to start than quoting Sun Tzu, in the famous book, The Art of War, who put it perfectly and better than I ever could when he wrote….

The more we fear we feel about a specific enterprise, the more certain we can be that that enterprise is important to us and to the growth of our soul”. Or to put it another way he said, “The more resistance you experience, the more important your unmanifested enterprise is to you – and the more gratification you will feel when you finally do it.”

This, in a nutshell, is why I am now trying to raise positive IBD and ostomy awareness, despite occasional resistance I experience!

Mostly, I feel it is a worthy, interesting ‘enterprise’ that could open up avenues that I previously would not have explored. It is also tackling a slightly taboo topic that I am drawn to fighting the cause for and normalising ostomy perceptions amongst the mainstream. I also feel that by setting up my website, etc, that this will help me come to terms with living with an ostomy for the rest of my life and make the most of the online community for support.

Going back to when I had my colon removed in 2010 (due to UC), my reluctance to talk about my bowel condition was not because of embarrassment. Instead, the reason I had kept it largely to myself was simply because I was able to cope fine without the need to open up much about my ostomy and then jpouch.

I think, in my experience, it is actually easier to keep quiet about having an ostomy than it is to put my head above the parapet, so to speak, and talk about it! But there is something interesting about embracing this challenge that is motivating me to keep talking about it in my own way.

Another motivating factor for me is to involve myself with my local Crohn’s & Colitis UK charity and also take part in fundraising events. I do not want to confine myself to Instagram taking selfies and typing platitudes that do not really have much substance behind them.

So I think that by getting involved with my local charity I will gain some sense of satisfaction from this, get to obviously meet people, and take part in cool fundraising events. I cannot see how this is not a good thing to do.

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Me in my garden, in the cold.

As a 27-year-old when I had my colon removed I wanted to be as normal as possible despite having an ostomy and then a jpouch. I thought the best way to achieve this was to not really acknowledge that there was anything physically different about me.

But I am now prepared to acknowledge my strange bowels and try and become a positive voice within the ostomy community. That is not to say that it cannot at times be challenging – it is challenging – so I’ll try and strike a balance between being positive and sharing the realities. But there are worst things in life than having an ostomy.

My decision to volunteer and ask for an ostomy to replace my faulty jpouch (and not just struggle on with my jpouch at all costs), acted as the catalyst to talk about it. Now I’ve joined the many people already involved in raising IBD awareness, if people find my thoughts and advice of use, that is brilliant. I have already had loads of direct contact with people….so long may it continue!

5 comments on this article

  1. Thank you Tom …
    As a single guy going to the ER less than 2 weeks ago was both shocking and totally Bewildering … To have some of my colon removed and to be wearing a “Bag”.
    I’m consoled by the fact the surgeon tells me that he will be able to “re-connect” me in about 3-4 months and will have a normal life again soon. I feel like I’m one of the lucky ones.
    I cannot imagine what happens to a person when they are told : “this is for life” …
    Ced.

    1. Ced Marsden

      Hello again Tom …

      I’m sorry, my comments and “stuff” weren’t very appropriate.

      I’m glad to read about your life and experiences … And honor you for stepping up and out about your experiences.

      Kindly,

      Ced.

      1. tomsgutreaction

        Hi Ced, it’s ok mate as I know where you’re coming from I’ve been there! I had my entire colon removed 8 years ago now and have lived with a bag on and off for 2 years so it lost it’s initial fear a long time ago for me. My girlfriend is cool with it. It’s really ok when you get use to it but if you can be re-connected then that’s a good outcome.

  2. Stuart

    Enjoying reading your blog – I am an ostomate since about 8 weeks ago. I have been doubtful about what details to give friends and family but am coming round to the decision to just be open about it all. Keep posting! Stu

    1. tomsgutreaction

      Thanks Stuart, I will certainly keep posting! I’ve found this website is a good way for me to educate family and friends about IBD.

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