My Awful Experience With Urosepsis Part One

Anita Urosepsis

Wow, so far this year has been filled with unpredictability, anxiety, stress and a whole lot of chaos... and that’s just my life! Everywhere we turn things have changed. Our ‘normal’ is no longer that as we are beginning to morph into our ‘new normal’ lives, filled with hand sanitiser and facemasks. 

Every person I speak to has their own personal issues. The pandemic has turned many of us into crumbling wrecks, not daring to go outside for the fear of catching the virus. Or nipping to the shops as quick as can be, sanitising everything we touch. Coughing into our elbows, no more hugs, no more cuddles, no more standing and chatting at the supermarket... life has changed beyond belief (and we still have three months of this sh*tty year left).

This year officially sucks!  

I have spent the majority of it looking after my mumma, who hasn't been well, and in looking after her I forgot to take care of myself. Simple things became huge and my energy depleted until I had none left.

Unbeknown to me, I had a UTI. Now, Anita-with-her-bladder would have been able to spot the signs of an infection a mile off, but Anita-without-her-bladder didn’t notice them until it was raging through her body. I felt hot, unwell (bleurgh) and everything I tried to do was made ten times harder as I had no energy and felt like I was dragging this old, decrepit body around. So, I asked one of Mum’s district nurses if she would ‘dip my pee’ as I realised something wasn't quite right.

Retrieving a urine sample with a urostomy pouch, isn't as easy as just peeing into a bottle.

I sat myself on the bed and started to remove my bag so I could take the sample straight from Sally Stoma herself. As a urostomate, I have no control over when and how much I pee. So I grabbed my water, drank it and then waited for it to come out…  and I waited... and waited... and I took my eye of the ball for just a second and Sally peed EVERYWHERE, except in the sample bottle! 

More waiting and drinking had to take place and I finally got enough pee to be able to dip it. One thing I will say, when collecting a urine sample from your stoma site, is please be gentle. The skin around the stoma is incredibly sensitive and you may find if you press too hard, it could bleed a little.

I was right. My urine had nitrates, protein and white cells in it. All signs of an infection. 

It also showed some blood too, but as our urine goes through our stoma (which is filled with all sorts of yucky stuff) this may not always be something to worry about. Dip testing your pee isn't actually enough to confirm what type of infection you have or what type of treatment is needed – if you are worried you have a UTI please get a sample sent off to see if any cultures grow. This way you will be given the right antibiotic for your specific infection.

Antibiotics play havoc with our bodies so take care of yourself when on them. I always add an extra probiotic to my diet and try to eat more rich, leafy green vegetables for their iron and B vitamins. 

As I was at Mum’s and away from my own GP I called 111. I had tried to register as a temporary patient in Macclesfield but due to my complex medical history no surgery wanted me. 

I was advised that I should be seen by a doctor within the hour. I had severe flank pain, and pain around my tummy and stoma. My face felt like it was stinging which I now know is a sign that I have a high temperature.

I went to A&E by myself (due to the pandemic) and was seen within a few hours. Because I had a very high temperature I was asked to sit in my car until a doctor could see me and they would call me when it was my time. When they called I was asked to go to an 'outside pod'. Once I was there I should sit and wait for them.

The doctor was helpful and told me to get the prescription that same evening and not to wait. He even suggested that I try to fit two tablets in before I went to bed.

That night was terrible. I felt awful, shaking and sweating one minute, feeling cold, and then feeling like my body was on fire. 

You could have fried an egg on me! As I laid there, wishing that daytime would come sooner, I realised that I couldn't reach my antibiotics. I had left them on the sofa and I was on the air bed, 2ft away. I just could not move, from shivering and feeling so, so, so bad. 

The next morning Mum’s district nurse took one look at me and called 999. 

To continue reading Anita’s story, click here: My Awful Experience With Urosepsis Part Two

“Spotting a UTI is a lot harder as a urostomate.”

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by Anita Brown

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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