The Patty project

An ileostomy is when part of your small bowel (the ileum) is pulled through an incision made on your abdomen to form a stoma. 

One end of the ileum is pulled through and sewn to your abdomen. The other part of the diseased bowel is usually either removed or allowed to heal before being joined back up together.

On November 7th, 2019 I woke up from a surgical procedure to remove a diseased part of my bowel with a stoma and bag attached to my abdomen.

During the final appointment before I was admitted to hospital for surgery my surgeon and I talked about a Plan B. Plan A was keyhole surgery to remove the cancer – Plan B was the back up if Plan A didn’t work out and wouldn’t you know it – Plan A failed.

The cancer was much lower than expected and because of this they had to open me up, remove the diseased bowel, form an ileostomy and the rest would be history until further notice.

The pain after the surgery was excruciating (we counted approximately 35 stitches) and if I thought that was bad it was nothing like the feeling of going home to live with a plastic bag attached to my abdomen that would be catching and storing my waste for months to come.

Eventually I would learn that unlike the anus, the stoma had no valve or shut-off muscle. This meant that I had no control of stools passing from the stoma (yay fun) and definitely no control of a popping stoma that released loud (offensive) sounds after eating eggs, cheese, some herbs & spices as well as my favourite curries… to say it was embarrassing in particular when not at home is an understatement.

There were no nerve endings in the stoma, so the stoma itself was not a source of pain or discomfort but the skin around it got itchy and sore and having no choice but to live with it was no fun at all.

It can’t be that bad!

At least you don’t have cancer anymore!

Count yourself lucky that it’s only for a few months and not the rest of your life!

Yeah right – thank you to all the insightful souls who parted their wisdom with me – it didn’t help.

I hated every part of living with a stoma (from beginning to end).

You should have seen my face when I woke to find it on my abdomen.

You should have seen my face when I had to shower for the first time with it.

You should have seen my face and his face too when I stood in our shower crying because I couldn’t control the output and had to catch missiles of poop shooting out in every direction.

I cried while he stood in the shower with me (most times fully dressed) trying to catch and stop the output (runny poo) while I sobbed that I wouldn’t be able to live this way.

Long story short(er). The Covid-19 pandemic happened and hospitals stopped taking patients for surgery unless it was life saving; I truly believed that my life would be saved if the stoma reversal was done ASAP but I knew that any trained medical staff would not agree.

What was meant to be a 3 month wait turned into the longest 7.5 months of my life.

My mental health and wellbeing was challenged; I could feel it deteriorating day by day and now when I look back and reflect I can see that I was definitely not in a good place and the decline was dangerous.

The reversal surgery was a success – they found a hernia whilst in there (apparently that’s common) and corrected it on the spot and surprisingly the healing has been much faster than the initial surgery was (yay) but re-training a very relaxed and unused bowel has had it’s fair share of ‘adventure’ and ‘mishap’.

I’m now sporting two very large, unsightly scars and the skin where the bag was attached hangs low compared to the rest of my abdomen (considering I was never planning to be a swimsuit model or even wear a swimsuit this is ok). A few weeks after surgery I would reach over to hold where my bag once was and at times I still find myself holding that area without even realising that I’m doing it.

Each day since surgery has been unique. It’s now been 8 weeks and 2 days since the reversal and my surgeon tells me it will take up to 12 months for my abdomen muscles to fully heal and many months before my bowel develops it’s new ‘normal’.

I’m so looking forward to a time where my life is not determined by a healing bowel.