06 Oct 2015

Ed talks pain and fear

So, I’ve been asked to write a piece for a project called Being Mankind, a book aimed at young people who might not have positive role models.

First of all, I’m truly flattered and humbled to be asked, but I’m struggling to put pen to paper as I wouldn’t say that anything I’ve done is particularly brave, selfless or extraordinary.

In brief, I’ve been asked to talk about a difficult time in my life, when I had major surgery to remove my large intestine. The operation went wrong after a few days, and my internal stitching came apart, so that the two parts of my bowel tore open leaking toxins into my body. I was in excruciating pain and very scared, as no-one in the hospital seemed to be helping me; I’d pull on the orange cord, but there was no immediate response and, after what seemed like an eternity, I was eventually taken into surgery and given an ileostomy bag.

The only thing about all of this is that, while a horrible experience, it was the first step in my getting well from suffering with Crohn’s Colitis, and, as awful as that was, it was seven hours and then over. While both emotionally and physically traumatic, initially anyway, it marked the end of my experiencing Crohn’s Disease. That’s an inflammatory bowel disease, where your bowel becomes inflamed and ulcerated, ceases to absorb fluid or function properly, and you pass lots of blood in your stools as well as suffering from chronic pain, fatigue and urgency. As soon as my infected area was removed, that was me in the clear, so any suffering I experienced during and post-operation, and for the months when I had the ileostomy bag pale in significance next to the experiences of those who have just been diagnosed with the illness in the first place. Having Crohn’s disease at 13 or 14 years old, learning to adjust your daily habits so that your cognitive understanding of your body changes and the unusual becomes the norm, that was the tricky part and I have nothing but admiration, respect and empathy for anyone being diagnosed for the first time. Those people truly are the strong ones, and the ones who inspire you to stop complaining and get on with it.

This will also be the first time I’ve written about my experiences, so it will be odd revisiting it all after so much time, but hopefully cathartic too as I have so much distance between then and now, and I feel like a very different person to when I was going through everything.

So, I shall try not to be too self indulgent and write as honestly and objectively as I can…wish me luck…


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