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It's D-Day for the Stoma

Posted: 29/1/2024

Surgery today. Every day for the last 60 days I have woken up and mentally checked off another day until my second surgery in this bowel cancer journey. And later today I will go back under the knife. I can't wait!!!

Don't get me wrong: I am not a fan of surgery and I absolutely hate hospitals but there is one thing I hate more… my stoma. I'm not sure how much good it will do to talk about this painful, embarrassing, distressing, stinky hole in my gut that will be no more in 24 hours. Does it help me to talk openly about it? Will it somehow help others? I have no idea, but it has been such a big, awful part of my life these past two momths that I simply cannot keep posting about my treatment and recovery without talking about the elephant in the room. So, here goes.

Firstly, what is a stoma? It is a hole in my stomach to which a part of my bowel is attached and through which the poo passes in order to give my bowel time to heal after the surgery on 1st December. The poo is then collected in a bag on the outside of my body.

There really is nothing nice about my stoma, apart from the fact that it is temporary. So why do I hate it so much? Where do I begin? It's gross. It smells. I can see my insides through the hole. Around the stoma is red raw where the bag sticks to the skin 24/7 and it stings all the time, never heals and only gets worse. Finally, the thought of collecting poo in a bag is just nasty.

I know it is a necessary evil and that there are many people who have permanent stomas. All respect to each and every one of you. Skiing down a mountain at over 200km or running a marathon on crutches doesn't come close to the challenge of managing a stoma.

It's become easier, no doubt. The first three weeks post surgery were probably the worst of my life (my wife's too) and that includes losing my leg! There have been some lighter moments along the way. My kids laughing at the loud squirting and bubbling of air and poo as it moves into the bag while we watch a movie (there's only so much a teenager can take when dad's poo is audibly squelching and squirting and gurgling outside his body while he sits on the lounge). How about the collective realisation that, at least for a couple of months, dad's farts won't smell? And then there was the time that I left a drawer in the bathroom open while I changed a bag and poo squirted all over my wife's toiletries, makeup and perfume. Actually, that wasn't funny and probably won't be for a couple of decades.

After 60 days I have learned to manage it. Lately, I've been riding my bike, I went out to dinner and to the movies with my wife, I've been to the cricket and last night we all went down to Lake Burley Griffin to watch the drone light show. I even stood in a toilet queue for 30 minutes without mishap. I haven't been brave enough to swim but I'm sure that, with more time, I would work that out too. Finally, leaks are rare, my skin has healed somewhat and I've worked out how to have a shower with the bag still on (no more accidents in drawers!). 

At this point I have to thank my stoma nurse, Olivia. I've seen a few but I credit Olivia with giving me practical and sensible advice and putting up with my swearing. She actually said "I have the best job in nursing." For the record don't! But I am so glad that you think you do. My first appointment with Olivia was a disaster. With the bag off, the poo output was unrelenting. We couldn;t keep up with it and, as a result, she didn't even get a good look at the stoma or the skin around it. Still, she had some tips which, over the next week or so, made managing my stoma easier. Our second appointment was much better and her sage advice has made such a difference to my life over recent weeks. I could almost entertain the possibility of living fulltime with a stoma… NOT!!!

Of course I could live with a permanent stoma if I had to. In many situations, a stoma is a life saver and people like Olivia smooth the path from outright horror to acceptance and effective management. A few people with stomas have even told me they prefer it over the standard bowel option. Honestly, that is great but for me, right now and with less than a day to go until it is reversed, no thank you.

Still, the reversal comes with no guarantee of success and, if things don't go according to plan, I will be knocking down Olivia's door in an effort to reach stoma nirvana as soon as possible. But for now I will just  share some top tips for stoma management in the hope that someone who needs help might read this: 

  1. Invest in lots of air freshener. For some reason the 'output' has an odd and offensive odour the likes of which none of us have ever smelt before.
  2. Become a member of the stoma association in your state. If you are a member, all the stuff you need for your stoma is free.
  3. Read the info the hospital sends home with you.
  4. Go see a community health stoma nurse where you live as soon as you can. There are stoma nurses in hospital and they really help in those first few days but you will need loads more help when you get home. Try not to be embarrassed - apparently it is the best job in nursing!
  5. Experiment. Try all the bits that come in the box. Persevere. You'll eventually find a process that works for you.
  6. Invest in extra sheets… and mattress protectors.
  7. Change your bag before breakfast.
  8. Don't poop into your wife's toiletries.
See you on the other side!

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