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Ostomy days – PART ONE

During my health journey over the past 5 years, I have had to rely on social media for health tips from young people around the world experiencing similar surgeries or complications. So I recently created a public Instagram account called @ostomydays, in order to try and give back to a community which helped me in many ways. Even if only one person feels less isolated from me sharing my experiences, then it is all worthwhile. 

Rectal Prolapse

Before children, I was generally healthy and only really struggled with Irritable Bowel Syndrome (IBS) throughout my late teens and early twenties, like so many others. My symptoms included a lot of pain, cramping, bloating, severe diarrhoea and some rectal bleeding. I used mild medications, diet and lifestyle changes to try and manage my IBS symptoms over the years.

After meeting my incredible husband Nick, we went on to have our three amazing children, Sofia, Georgia and Harry within quick succession. I struggled with severe constipation through all three pregnancies (which isn’t abnormal) and all three births were vaginal deliveries with minimal complications – the deliveries weren’t easy but I pushed through with no pain relief, gas or epidurals for any of the births – which sounds crazy to me now that I know I tore my levator muscles from the bone completely on the right side and have partial tears on the left. This damage to my pelvic floor, having three children within three years and one month and also having hypermobility contributed to my subsequent health issues.

When Harry was about 6 months old, I started noticing some abnormal symptoms – pain when using my bowels, aching lower back and backside, difficult and incomplete emptying which led to over-wiping and some loss of blood. I have experienced hemorrhoids in the past so knew things were different this time, so after some investigation with a mirror I knew it was time to see a doctor – rectal prolapse is not a pretty site!!

Bowel Surgery

My GP performed a physical examination as I squatted in her office and this was the first of countless internal examinations, which have been embarrassing, intimidating, invasive and at times painful over the past five years. All of my pride was left at the door from that day on. 

I was referred to a colorectal surgeon who after more examinations confirmed that I had full-thickness rectal prolapse and booked me in to perform a Delorme’s Procedure, which basically entailed surgery to repair the external rectal prolapse by operating through the anus. The lining (mucosa) of the rectum is stripped off the prolapse to expose muscle of the bowel wall. When all the lining has been stripped, the muscle is bundled up with stitches to fix the prolapse. The excess lining (mucosa) is then trimmed and stitched back to cover the repair. I was told complications could include bleeding and a narrowing (stricture) of the anal opening among other things. Prior to surgery I spent a few months of testing out different fiber and laxative combinations under the guidance of my surgeon. So during the Easter holidays of 2016 I underwent my first bowel surgery. The surgery went well and after a rough period in hospital I was sent home with strong pain relief and a strict fiber/laxative regime. 

Complications

Unfortunately within a couple of very difficult weeks I ended up back in hospital and I spent three days passing blood clots the size of golf balls through my anus. My rectal passage had narrowed (strictured), so my surgeon manually stretched the stricture whilst I was in hospital – not fun! After the bleeding reduced to a normal amount I was discharged, but it wasn’t long before I was back in my surgeon’s offices where my stricture was manually dilated once again. A very invasive and painful process so soon after rectal surgery. After another few unbearable weeks of little sleep and a lot of pain I was put under anaesthetic to have a proper rectal dilation procedure performed. 

2016 was a tough year as I spent months having to be put under anaesthetic for dilations and also underwent many (too many!) manual dilations with no pain relief. Unfortunately, my surgeon had not seen such a bad response to the surgery, with such severe strictures over and over again. 

Hysterectomy & Bladder Repair Surgery

The constant straining day and night to try and use my bowels, combined with the damage to my pelvic floor in childbirth, caused my uterus and bladder to prolapse. So once my rectum stricture was widened to an adequate amount, I began the next chapter. 

Luckily, I completely trusted my obstetrician and gynecologist and after trying multiple pessaries unsuccessfully, he performed my hysterectomy and bladder repair in late 2016. Although the first 24 hours was rough after surgery, my recovery from this operation was fantastic in comparison to my bowel surgery. I was desperately hoping that 2017 was going to be the start of a new year where I could move on and put my bowel issues behind me. 

There were a few good months and I got on with life, but before long when I started to notice my bowel symptoms increase in severity again, I saw a great physiotherapist – unfortunately she was unable to do anything for my condition at this advanced stage. My rectal prolapse had returned.

I was referred to an amazing professor who is part of the Sydney Colorectal Associates. He was extremely thorough and performed many tests and examinations under anaesthetic.

The battle to use my bowels was night and day, I tried many different treatments, experimented with every type of home enema available (always fun), but whilst trying to raise my children and lead a normal life, we realised something else was needed.

The symptoms of uncontrollable flatulence and bowel incontinence when I was able to finally get anything to pass through, affected my daily life and I lost confidence in being in public for any long period of time.

You shouldn’t have to resort to adult nappies, whilst your kids are still in nappies!

To be continued…

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