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My Confidence BE® Story: Laura

Posted: 25 March 2024

My story

My journey started began back in 2017 aged 40. I was passing blood in my urine which is a common symptom of a urinary tract infection or a UTI. I thought it was just another one of those which I’d been treated for over many years.

It turned out that I was passing faeces due to a fistular between my bladder and bowel as a result of muscle invasive stage 4 squamous cell carcinoma, or bladder cancer.

After various scans, checks, and creating numerous plans, it was decided that the surgery to shrink the tumour would be suitable. However, this would be very evasive for a short-term, one-dimensional solution. A more long-term and dynamic option would be to have a pelvic exenteration which is the removing of my bladder, part of my bowel, and all my pelvic organs.

All this happened within about three months, from the initial signs to the operation. I now have two stomas: a colostomy and a urostomy. I’m what they call a ‘double bagger’.

My recovery

Surgery was a very traumatic experience. But I remember waking up in the recovery area and the first thing that came into my head was that I had got through the operation. I remember feeling surprisingly alert and asking the nurses to call my husband, telling them he’d be at my Mum’s house.

I was out of it a lot during those early post operative days. I was in a bad way. I felt like I’d been hit by a bus.

You have highs and lows. The operation was a success – high. You feel a little bit better than the last day – high. Then you have three poor days – low.  As a control freak, I had difficulty in managing the recovery process. Not that you can manage something like this, but I methodically learnt the recovery steps. Sitting up in a chair, understanding how my stomas worked, learning how to change my bag, walking… it was all about little steps.

Having my husband in the room with me made a huge difference. He was just being there. He used to work next to me, looking back it made things a bit more normal. I kept telling myself it was a journey.

My emotional journey

My emotional journey has been a lot harder than my physical. Lots of memories stick in my mind.

I remember I was in hospital, waiting for my surgery and as the clock struck midnight, I thought that it might be my last birthday. 

Another memory is panicking and being frightened about going home, about the thought I didn’t have a nurse at the end of a hospital button. That was overwhelming, but I did it.

I was a size 18 before the diagnosis and dropped to a size eight. Most women would love that, but I felt vulnerable.

Looking back now, I think my journey has been remarkable. I’ve been promoted at work, I still travel, I’m surrounded by friends and family, and we do normal things.
I don’t sweat about the small things anymore. I know what’s important and if my body and mind don’t allow me to do something at a particular time, I just delete for the time being.

 

My physical journey

I talk a lot about journeys and I imagine many others do the same. The little steps you take, the improvements you make every week, etc. Then there’s the reduced medication. You chart it all, well I did. I suppose that’s what I do in my job, so I transferred those skills to my home. 

I look back and see how long the journey was, the stops and starts, the meanders, the milestones. You expect, or more like wish, to be able to do something by date X. But that worked for me.

The emotional and physical journeys sat side by side, but they have different speeds and routes. Physically I was quicker, I was back at my job sooner, but emotionally my journey was slow.

My well-being

It’s six years since my surgery and I rarely ask ‘why me?’. When I do have a bad day, I ask why I have all these extra things to do and carry but, on the whole I’m a positive person and I can say that I’m very proud of my achievements.

I think this is one of the reasons I want to help make the journey easier for others. I volunteer for a blood cancer charity and support lots of people on their journey which means a lot to me; I get very emotional when I’ve been able to make a difference for someone else.

I’m often asked what having a stoma means to me. It means lots of things. Firstly, I’m still here. I’m not disabled but I have a hidden disability. My life is full of practicalities, but equally I can go to a party at night or go to a work event. 

Life is just a bit different for me and having a bag that feels good is very important. It’s different to other bags on the market, it almost feels fashionable. Why shouldn’t people living with a stoma feel good about themselves?

My everyday life

I live a very full life. I’m a delivery manager for a large multinational company; basically, making sure things happen at the right time at the right place.  I’m married and I love travelling. I used to travel a lot with work but that has slowed down since Covid and video conferencing.

With travelling a lot, my luggage is a wee bit bigger. I always pack extra stuff, carrying items in my hand luggage and in the hold. It takes time but it’s a small cost to pay.

I have another passion… cooking, which takes up half of my spare time. The other half is spent fighting for the rights of people with a stoma. Helping others through social media, webinars, chat rooms, volunteering… I’ve even written a paper on living with a stoma. My life is very full.

Using Confidence BE® has definitely boosted my confidence in everyday life. I’ve got that little bit more assurance about me because I know that things are going to be OK.

 

My connection with Confidence BE®

I have two stomas – a colostomy and a urostomy. I used Confidence BE® first for my colostomy and knew after five years what to expect when the urostomy option became available.

It was still quite daunting to change. I was very familiar with Confidence BE®, having used it from three months after my initial surgery. I wanted the feel, the shape, and the fit which I wasn’t getting with my other bag.

I was very keen to have the matching bags so, to now have two bags that are smooth, with an almost warm feeling, sort of hugging me, is just great.

The urostomy Confidence BE® bag also has a really good shape and I love how the outlets can be hidden away. The first impressions were good, but the big thing is that again I didn’t feel the bag on my body anymore which I always did with my previous bag. To not feel that you are wearing a bag is a winner for me.

And so, without sounding like a cliché, it gave me the confidence to go out and do normal things whilst feeling secure. It’s clear that whoever designed it had listened to what’s important to people and that everything had been thought through.

Then there’s the night drainage bag which seamlessly connects with my urostomy bag. Getting up in the morning, putting on a clean bag, and then being able to seamlessly transfer that routine to the night time has definitely improved my sleep.

There’s also the flexibility of the tubing so I don’t feel it’s there; also, it’s not cold. I used to get out of bed and the tubing was always cold when I awoke, but it isn’t cold now.

Good quality skin is important, with no issues like adhesion. None of us have the perfect body shape so having a bag that sort of moves with the body is important.

I lead a busy life, I travel I work, I like going swimming wearing a bikini, so I want certainty and Confidence BE® provides that with both bags.

To sum up really, Confidence BE® constantly works for me because I don’t feel it’s there which is important to me because I want to get on with my life. I’ve got a stoma; it’s not going away. I have to live with it, so I need something that is going to work. The acid test is that my husband has noticed the difference in me - I am now more confident in myself to just do what I need to do.

Please find a link to see Laura's full video interview below: