An Ode To Support

An Ode To Support


Often inconspicuous, it's a valuable asset to have. It's also the easiest asset to overlook.

Coming to terms, alone, with Crohn’s disease - much less dealing with the required surgeries - can turn one numb. Hospital stays blur together and days of pain morph into months, turning you into a shell of a person. Which is very much what became of me.

But in the thick of this, there was my wife…and heavily pregnant at that. She would visit me every day, fighting with other visitors for the few car parking spaces the hospital had, just to spend sixty minutes by my side. When I returned home after my emergency surgery, she would help me out of bed, lower me in and out of chairs and be there to stop me from passing out when dealing with my stomas.

Going through hell and back with someone by my side made all the difference

And yet, I was still alone. Although my wife was there, she didn’t actually know what it’s like to have this disease. She saw me struggling with my stoma but she couldn't truly grasp the feeling of having one. That can be very alienating.

Realising this, my wife pointed me in the direction of something she saw on the Crohn’s & Colitis UK website; a group called #GetYourBellyOut. It’s an IBD awareness campaign and Facebook community. All of their proceeds go to CCUK. I gave it a look and thought maybe I could bring something to this group. My dry wit, sense of humour and desire to help others would fit in there. So I took the plunge and joined.

Joining #GetYourBellyOut was one of the best decisions I made

I was now with people who knew the struggles of IBD and the things that come with it. It helped overcome the sense of isolation you can get from feeling different from the norm. I could help people but I could also get advice myself. This not only gave me a sense of belonging but also a purpose. I have become comfortable in my own skin, stoma ‘n’ all. I posted pics on their Facebook accounts, took part in Twitter takeovers…and even became Mr September on their 2015 calendar!

I've met some amazing people I would consider friends for life, some of them hailing from across the globe. I have arranged and attended “meets” where sufferers can get together and socialise, share experiences, and encourage each other. It’s something so simple yet so precious you cannot put a value on it.

And talking about social support...

Without the support of all those mentioned above, you would not be reading this blog today. For all your ongoing support, I owe my wife, #GetYourBellyOut and the friends I have made from it a big THANK YOU.

Even with someone by your side, it can feel lonely adjusting to life with a stoma. Support groups can help.

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Michelle shares her experiences of stoma support on social media

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by Nick Axtell

Nick Axtell

About the author

Hi I'm Nick. Diagnosed with Crohn's in 2006, gained a Stoma in 2010 and Completion Proctectomy November 2015. I have a family with 2 girls and a somewhat unusual sense of humour, which I hope will come across in my blogs. I am trying to live my life to the fullest and not let my stoma get in the way.

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