World Continence Week 2023: Belinda’s Story

My name is Belinda. I’m 50 years old, and this is my story…

On the 7th of June 2023, I underwent Laparoscopic End Colostomy surgery and while it is a big adjustment and living with a “bag” is a lot to get used to (I’m still learning and adjusting). I feel that for the first time in about 3 years, the runaway incontinence train is finally back in the station, and I am in control… or getting there.

For many years, I have struggled with urinary urge incontinence together with voiding difficulties that caused recurrent bladder and kidney infections. Selfintermittent catheterisation became “normal” for me, and like most things, I got used to it and got on with living.

In mid-2020, I began having worsening episodes of urinary incontinence, as well as bowel incontinence. Coupled with chronic diarrhoea, this became more and more of a challenge for me.

I was referred back to my Urogynaecologist in November 2020 (my favourite specialist of all - she is an absolute legend) who ran numerous tests and referred me to a Colorectal surgeon to investigate the bowel issues.

Both specialists recommended me as a very good candidate for a Sacral Nerve Stimulator (SNS) implant, and after a successful trial, I underwent permanent placement of the SNS implant in August 2021.

The implant has been fantastic for urinary incontinence. I no longer have any bladder “leakage” or accidents, and I would recommend looking into this for anyone with similar issues. Unfortunately, it had no effect on the embarrassing “bowel problems” for me, although for many people, it is very effective.

For most people, when your body sends the message that it needs to have a “poo”, you have more than sufficient time to find a nearby toilet, wait your turn in a queue if necessary (what is it with ladies loos that there is ALWAYS a queue!), and get yourself comfortably seated before the “business” gets underway. All neat and tidy in the loo as expected, with sufficient loo paper to complete the “paperwork”.

Unfortunately for me, the time between the message being received and bowels opening, gradually got shorter and shorter, and what started out as just a “slight leak” caught in a sanitary pad, progressed to flood gates opening with total loss of bowel control all through my clothes.

Of my worst experiences one would have to have been coming back on the train from Mandurah and realising just before my stop that I was in trouble, only to find the toilet at the next station locked.

By the time I managed to get to my car to drive to a nearby toilet, it was too late, and it was everywhere. The second, was realising I needed to find a loo in a hurry and being told there was no public toilet in the store (staff only), and that I could check at the vet practice next door if I could use their toilet. No luck there either – the toilet was for clients and staff only, and despite literally begging and explaining my incontinence problem (humiliating as that was), I was told I could find a public toilet in the Bunnings store around the corner.

Needless to say, by the time I got in my car and drove around to Bunnings, it was too late, and I was in too much of a mess to even get out my car. Phoning home in tears to say “please leave an old towel outside for me” so I could get myself inside with a little bit of dignity and get straight in the shower, was no longer unusual.

As you can imagine, over time, with the thought of getting caught in traffic and unable to get to a toilet, and with the constant anxiety of having an “accident” at work or out in public, I became more and more reclusive, spending most of my time home with family (and my Labradors). I stopped going into the office and nowadays only work from home.

Fortunately, my boss was incredibly understanding of everything as I was very honest about my circumstances. I also became very careful to control my eating if I knew I had to go out for something specific. If I didn’t eat, there would be less risk of needing the loo, and I have gone whole days with nothing to eat or drink until dinner time when I could comfortably be back home (just in case). It was probably an eating disorder in the making! Along with my team of specialists, including a specialist dietician and a continence physiotherapist, I have tried exercise and dietary changeslactose free, gluten free, low fibre, thickening diet, you name it. I have tried medications - Gastro Stop, Psyllium, Codeine, Creon, Cholestyramine Lite, again, you name it! It has all been like putting a band aid on a cut that required 300 stitches and a blood tranfusion!

My Colorectal surgeon asked me earlier this year to meet with a specialist stoma nurse “just to explore my options” and in search of a better “quality of life”. My first response was “NO WAY! That’s for people with life threatening bowel illnesses like cancer, Crohns, etc., not for me with “just” incontinence.”

I eventually agreed to chat with the stoma nurse, and it was life changing for me. The nurse was kind, knowledgeable, nonjudgemental, and full of empathy for my situation (so much so that I had to give her a huge hug afterwards).

I also joined several Facebook stoma support groups to gain better understanding from people actually experiencing life with a stoma. Turns out I’m not alone in going down this path for incontinence. There are many others out there for whom it has been a life changing-life saver.

So here I am today, having made a very educated and well researched decision, with a Colostomy called “Piglet” (because who better to hang out with and support Pooh), and still taking one day at a time as I recover and adjust. So far, so good - a positive mindset is helping tremendously. One day at a time!

I am so blessed to have a huge amount of support around me through this journey and whatever the future holdsmy amazing husband who still thinks I’m gorgeous and sexy, stoma and all, and my two incredible kids. Also my extended family and closest friends (my chosen family), who are so supportive too.

I’m blessed indeed! And I’ve got this!!