People arrive at having an ostomy in such a variety of ways, each having their own unique story. Recently I’ve been fortunate to spend time in the company of a group of people all of whom have an ostomy and we are all so different, yet also have this one thing in common.
There is nothing that would have prepared me for surgery. In fact I think if I’d known then what I know now it would have been a tougher decision. But the right one nonetheless.
The reality is no one would choose to have an ostomy, to deal with the loss of their intestines, to poop into a bag stuck to their body. Except I did choose. I chose to lose my colon rather than continue to hammer my body with drugs that my body wasn’t responding to anyway, to have continued active bowel disease, to wait for cancer or to further compromise my immune system and tax my body and organs. That route had an inevitability to it that didn’t end well so whilst surgery isn’t easy to opt for it was something of a no brainer (for the logical part of my brain anyway).
There are times when I reflect back on life before surgery, particularly 2016, which I lost entirely to being unwell. The thing that hit me hardest when relapsing was the isolation. The nature of bowel disease means that when you’re at your worst you are completely alone, sometimes for hours a day. I was confined to the bathroom, in intense pain, with diarrhoea and bleeding and it was utterly exhausting. In 2016 before I became too unwell to travel to work I spent stressful journeys on the train, trying to keep calm and not let my face betray what was really going on as I counted the minutes and seconds until I could get to the station toilets. Inevitably I would find myself sending emails from the toilet at the station or at work apologising for not being where I was meant to be whilst trying to cover the reason. As if that’s not stressful enough starting the day exhausted, putting on my best game face and negotiating work activities in the process all the while hoping I would be well enough to get through the day.
Yes having your colon removed is life changing and in ways I never comprehended. It has touched every aspect of my life and now I’m putting it back together again. There are days that are harder than others but in fact life with my ostomy is good. I have weight to lose (gained through months on steroids) and have to get back to physical fitness (I love training for strength and can’t wait to be able to workout regularly again). The main challenges for me at the moment are some legacy health issues along with some new and emerging ones. I’m still in a much improved situation compared to last year and it’s my belief that I will be able to manage these and go on to live a full and ‘normal’ life.
So why surgery? I think the above says it all!