Six Rookie Mistakes With A Urostomy

by Anita Brown

Anita And Sherlock

You’ve had your operation and now you have a urostomy. What happens next? Well it is all about learning what works for you. It’s about learning how to live with a stoma and managing the pitfalls.

You’ll gradually become more confident in changing your bag and having a full night of sleep, with or without a night bag attached. I choose to have a night bag to ease my mind, but it doesn't come without problems.

I want to share what I have learnt over the past two years:

Rookie mistake 1: Forgetting to put the 'plug’ into the bag! Yes, yes, I am sure that we have all done this. In the beginning I was so worried and anxious about changing my bag that I totally forgot to plug it, the result? My poor dog, Sherlock ended up being 'peed on' as I stood up and lent over to get my make up from the shelf! What was more worrying was that I had no idea where the pee was coming from as was convinced that I had changed my bag perfectly. 

Rookie mistake 2: Not waiting enough time for the skin to dry around the stoma area before putting on flanges or bags. Ah, in this world we are all impatient at times and it’s very easy to rush when changing your bag. My advice is to stay calm and make sure you have enough time to change it. I was told to use a hairdryer to dry the area around the stoma, however it seems like a bit of a faff to me, and actually SecuriCare's Clinical Governance Manager advises against this due to the potential hazard of burning yourself. I used to just blow on the area! Now though, I use the LBF Barrier Film Wipes which dry in record time.

Rookie mistake 3: Thinking that your bag will last "just one more day”. If like me, you tend to wear your bag for a few days (to help save the planet) then my advice would be that if you are thinking the above phrase then it is probably time to change your bag. 

I tried to be organised in the beginning and would mark 'bag changing day' on the calendar but as always, my chaotic life takes over and I simply forget (or I can’t be bothered).

Now we are going into the ‘night bag-nightmares’! Let’s start with the simple things…

Rookie mistake 4: When you go to bed, leave some pee in your stoma pouch and then attach it to your night bag. Push gently on you pouch as this allows the pee to flow into said night bag. Some nights when I haven't done this, the night bag has ballooned up and not allowed urine to flow down causing pressure to build in the bag till it pops, covering me and the bed in pee! That then leads to a very grumpy Husband at two in the morning, who gets to change the bedding whilst I clean myself up.

Rookie mistake 5: After emptying your night bag in the morning (if you use the ones that you can use for a few days) please check that the tap that allows you to empty it is SHUT! One night I had gone to bed and attached the night bag and was gently pushing the pee into the night bag. You can see once it starts to flow into it and I noticed that the bag didn't seem to be filling up, not even a little bit. I carried on regardless and then noticed that my feet where wet! The Hubs had been wonderful and had emptied my bag in the morning but hadn't put the tap flow up. We spent days shampooing the carpet.

Rookie mistake 6: Always, ALWAYS check that your bag and night bag tube aren't twisted or blocked. Seems easy enough doesn't it? But the amount of times, even now, I have to untwist the bag and stand up in the middle of the night in order to get the drainage working, is unreal.  This usually happens when I am tired. 

Rookie mistake 7: The tube to the night bag isn't long enough. I, for one, fidget like nobody’s business in the night, and toss and turn all over the place. You can get tube extenders which will lengthen the tube, allowing you to feel more secure whilst sleeping. I haven't tried this method yet, but It could work for you if you are struggling (I like living with the danger haha!).

Basically going to bed with your night bag plugged in is a game of Russian roulette… Will it snag and twist? Will the bag pop? Will it all last the night? 

But it isn't all bad news, the good news is that you will only make these mistakes once. Best of luck!

Anita Brown

About the author

Hi I’m Anita Brown. Diagnosed with terminal small cell bladder cancer in April 2016. I've had palliative chemo and radiotherapy, and a radical cystectomy and urostomy in August 2017.

I've had problems with my bladder all my life, from incontinence, to kidney and bladder stones, and now cancer. I would like to share some of my experiences - follow me on Twitter.

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