Dysautonomia and my Catheter

Sammy's Story

Originally published on: March 23rd, 2022. Last modified on April 4th, 2022

During February we organised a catheter awareness week on our social media channels to raise conversation around conditions such as Fowler’s Syndrome, Sacral Agenesis, Urinary Retention, Bowel Cancer and Dysautonomia, all of which can lead to life with a catheter. Every day for a week, we shared  the story of inspirational individuals, who are living with various conditions that require a catheter to learn how they cope.

Did you see any of our posts? You can go back and read the stories either by visiting our Facebook page, Twitter page or Instagram grid and check out the stories we were tagged in by using #catheterweek. Do like and follow us to be sure to see future events like this!

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As always, we love hearing from you, so if you want to share your story  about living with your bladder or bowel condition contact  [email protected] or DM (message us directly via) our social channels.

To round up the event, we share the story of Sammy Jones, 25 years old from West Lancashire. Sammy is a wife, a ‘fur baby mum’ to her three sausage dogs and also lives with an incurable condition called Dysautonomia, which affects the entire nervous system.

First of all, thanks for speaking with us Sammy – Can you tell us a little about your Dysautonomia diagnosis?

I was diagnosed with Dysautonomia about five years ago. The diagnosis process was pretty lengthy and because the condition affects so many aspects of the body (the entire nervous system) I had maybe a full year of testing, scans and specialist appointments. Once I got the diagnosis I was told that my particular case was pretty severe and they were struggling to be able to stabilise my symptoms, in the end my condition has led me to become a full time wheelchair user.

How did you find out that you had Dysautonomia? Did you experience any symptoms that led to your diagnosis and how this has led you to needing to use catheters? 

My first symptoms were when I started to blackout without warning. I would wake up on the floor in the hallway of my home totally unaware of what had happened or even in the shower. It unfortunately continued to happen a lot, which resulted in me needing an urgent referral to a cardiologist.

After investigations we found the cause to be, because of my heart, which was going into extremely fast rhythms, which consequently was dropping my blood pressure dangerously low leading me to lose consciousness. As the years have gone on my condition has progressed to affect not only my heart but my stomach and over the last 18 months my bladder too.

I have since been diagnosed with complete bladder failure and now have a Suprapubic catheter surgically placed through my tummy to drain my urine 24/7.

What treatments have you had or are ongoing for your conditions? 

I have been on a concoction of medication for years now, I’m currently on probably over thirty different types to help manage my various symptoms. I also have a loop recorder surgically placed inside my chest to manage my heart disturbances too.

Regarding my bladder I have had multiple surgeries to try and help my situation but unfortunately nothing has been successful leaving me with a long term catheter.

What has been the hardest aspect of going through using catheters? 

The hardest part of my urology journey I think has to be the pain I have been through.

From the very day I first went into retention nobody in hospital could catheterise me which led to emergency surgery that morning to place an indwelling catheter and stretch my bladder and urethra. When I came back round I was told that I had well over a litre of urine trapped inside my bladder. Since having my SPC it hasn’t been straightforward, and things like my tube changes, infections and blockages all leave me in huge amounts of pain daily.

Another huge aspect of my catheter was the impact it had on my body and confidence. Having to navigate fashion with a tube through my tummy and leg bag has been a long journey but one I feel that I have now managed to conquer.

Were you provided with any information about how to use catheters following your diagnosis? 

I have personally had a great urology team from the start who are only ever a call away at my local hospital.

I have been taught everything I know through my urologist and urology nurses which I’m super grateful for.

Has needing to use catheters had an effect on you and your relationships? 

At the start of my journey I had so much anxiety about leaving the house. I was worried about leakages and people seeing my bag. I turned down social events and seeing friends because of it but after being able to come to terms with my situation, I now don’t usually let my catheter get in the way of any kind of relationship. My husband for one is my biggest supporter, if I have an issue when we are out or my bladder starts to play up, all I have to do is give him the look and he knows we need to head home.

Do you think there’s enough information out there? 

No, I don’t think there is enough information for someone who needs to use catheters.

This is most of the reason why I started to share a lot of my experiences on my Instagram page because although I had a lot of support from my urology department, I didn’t know many people in my life with catheter experience – and was truly shocked at the amount of people who had no clue what they were or how they was used.

Further Information

We’d like to thank Sammy for sharing her story, and for her insight into living with Dysautonomia.

To find out more about catheters you can download our free catheter care guide or you can visit the catheter care hub on our website.

If you require support with your catheter care, speak to our Bladder & Bowel Home Delivery team who can advise you on a range of products and arrange for samples from the widest range of suppliers to ensure you have the best catheter products for your needs. Simply request a callback securely via our website and one of our team will contact you directly.

We’re always interested in hearing your experiences. If you’d like to share your story, please email us at [email protected] for further information, or submit your story to us directly.