Yesterday was officially 1 month post-op!

Today I got to catch up with one of the senior stoma nurses to have a check up of my skin. During my previous visit last week, it was noted that the skin around my stoma area is very red and raw to the point of bleeding. I’ve tried powder and barrier rings, but today showed that it hasn’t gotten much better. To quote the STN: “that’s shit. It’s a crap stoma”. Essentially, because my stoma is so small and is actually retracted, no matter what I put on it, output is still going to get on my skin and literally burning it. This causes quite a lot of pain. Think of if you get a graze or a burn and you jump in the shower and you feel that sting of liquid on raw flesh? That’s what I’m getting almost 24/7 on my belly.

A big realisation moment came when the STN said to me that basically my only option for reducing the aggravation and preventing ulcers on the area is to get a reversal as soon as medically possible.

This was a big kick in the gut. As literally as it can be, because I went into this surgery with the most positive attitude I could muster. I did my research and I found young people who had had this surgery and it had changed their lives! They were happy, and they loved and embraced their stoma. I was telling myself and others that, “hey, this is a new lease on life for me! I want to live with a bag as long as possible because I’ll have control which I haven’t had for 12 years! I’ll be in less pain! I’ll have literally changed my life!” but now… I hate it.

I hate having a plastic bag of shit stuck to me all day, every day. I hate the way it feels when its slightly full of output. I hate waking up at 4am with a balloon of poop and gas that’s about ready to explode. I hate the way it sticks out the top of my pants and creates a lump in my clothes. I hate the pain that I have. This is not how I wanted this to turn out. And I hate that.

But for now, I’m trying not to dwell on that and look at the positives:

- At least I’m not running to the toilet every half hour. I sat through the entirety of Avengers: End Game without needing to go to the toilet once!

- I have such a great support network with my partner, my mum, my friends, my work family, and the stoma nurses.

- The nurses are doing everything they can to help me be in as little pain as possible, next week we’re ordering firmer convex bags to hopefully push my stoma out a bit, and I’ve started wearing a belt.. just to pull it in just a little bit more until those get delivered.

Right now, I’m just taking each day as it comes. I’m embracing my bad days and celebrating my good ones. Things have a way of sorting themselves out in the end so we’ll see where we go from here.