The Reminder that I’m Not Normal

I sit in the bathroom, looking straight ahead to my ostomy bags and accessories. I smell the clinical, medical appliance nature of them, but they don’t look medical. I know the feel of my bag, the crinkle of the fabric again my waistband. The grey colour that disappears under my clothes, concealing my medical condition. 

An ileostomy.

My stoma.

Pricilla, the drama queen, coming shockingly into my life 10 months ago.

I feel my bags staring back at me. I feel the weight of the bag that sit against my skin. I feel the heavy output inside, the movement of my stoma through the inspection window. How did it come to this? How did I get here?

I know how I physically got here; I had a sub-total colectomy in August 2016 as a result of my colon being utterly and devastatingly destroyed by Crohn’s Disease. I’d lived with my condition for almost five years up to that point, it was a good run. I’d been medicated with biological treatments for almost all of that time, but my body had just had enough. I’d also had enough, my ostomy surgery was a godsend and has changed my life.

I am no longer tied to the bathroom, I have a varied diet and I am able to work hard and well. Those things were dreams of mine this time last year. But, if last year you’d told me I’d end up with a permeant stoma and love it, I would have laughed, long and hard.

That does not mean that I always love my stoma. I have moments when I hate it. I hate the fact that I don’t use my digestive system, the bottom end, the way I used to. I never will do. That is tough to accept. I have a circular part of my abdomen that will now always be covered by a bag, bar the ten minutes it takes to change it. I hate not knowing if my disease will come back; hard, faster, stronger, more devastating than before. I hate knowing that reversing it will probably leave me more unwell and cut open all over again.

I realise that my body is not normal and I’m not sure that I’m okay with that.

Staring at my ostomy bags; they are waiting to be used, to fulfil their purpose, just reminds me that things have changed. Changed for the better, but changed. That change is hard to always love and appreciate. I have fleeting moments during the day when having an ostomy is a pain in the non-functional arse. I know, that in the big picture, my stoma makes me different, unique and special. And those are good things! But my mind doesn’t always want me to feel that that is good. The negative feelings overwhelm the long list of positive things that my stoma gives me! But I am worn down. 

Whilst feeling the negative aspects of my ostomy more than the positive, I wonder if feeling like this is just the process you go through to accept your stoma. I went through something like this when it came to accepting my Crohn’s Disease a couple of years ago; is this the same?

Should I want anyone to recognise this as a ‘thing’ or is this just me? Am I alone in this? Do the negative feeling ever go away? Or are they there as a check on the fact that my ostomy is real, alive and we are both adapting to each other, constantly?

Answers on a postcard, please.

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