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Breaking down the stigma

At 38, I never thought that I would be a candidate for ostomy surgery. In fact, it was something I had not contemplated for almost eight years. At the age of 30, I was diagnosed with bowel cancer and considered myself lucky at the time to have had a near full colectomy. I categorically refused to discuss stoma surgery, even if that meant I was left battling ulcerative colitis in the remnants of a large bowel (approximately 6-10cm).  In early 2018, in what I thought was a bad flare of UC, two new cancerous tumours were discovered; one in what was left of my large bowel and one in my rectum.

So here I am, two years on and for me…awareness is key!

Two days after my surgery, I had my first set of friends come and visit me in hospital.

It was a Sunday afternoon and the nurse on duty told me in a stern authoritative tone, that I had “better cover up” (referring to my stoma bag) before they entered the room.

At that moment, I made a very conscious decision to not cover up and I don’t think that I have looked back since.

My friend subsequently fainted after about 3 minutes of arriving, nothing to do with the sight of the stoma bag and more to do with the side effects of his wife’s 40th Birthday party the night before!

People often ask me, when will I have my ileostomy reversed? Or, don’t I want to have my J-Pouch reconnected? To be honest at the moment, I’m okay with it, after all, I’m still here to tell the tale. I’m not in pain and I can do everything I did before…in fact maybe more, because I am not constantly in the bathroom or in a heightened state of anxiety scouting out the nearest toilet!

Everyone’s experience is unique, and I know people can struggle with having had surgery and making adjustments to their daily routine, before even considering any stigma attached.

I have been so blessed; my wife Amanda has been so understanding together with the rest of my family and friends. I consider myself lucky that from day one, I’ve also had the most amazing stoma nurse.

My three young boys (now 4, 6 and 10) have been very understanding, I found you just have to be open and honest. My youngest calls my stoma a tomato and isn’t shy standing about watching me change my bag.  Believe me the threat of; “I’ll empty my bag on you” is enough to get them to do most things around the house! 

I can be self-conscious at times, especially if I am out in public and my bag is getting full.

Someone once asked me if I was wearing a big Texas cow-boy belt buckle, in this instance I took great delight in telling them it was my stoma bag!

People are naturally curious and more embarrassed than me, so they don’t ask! 

When they do ask, 9 out of 10 times it will be along the lines of “how do you go to the toilet?” or “do you still fart” or “what can’t you eat?”. I would say lots of people really would like to ask, “does it smell?” but I haven’t had that question ever! 

I find myself pushing boundaries, I try and eat and drink anything and everything I would like! The key for me here is chew, chew, chew! Other ostomates might say maybe I am just tempting fate or being too cocky? But at the moment for me it works! 

It’s not all smooth sailing and there are days where I just wish my plumbing would go back to (dare I say it?!) normal.

I have had a bag leak at a dinner just after entrée was served when I was wearing a white shirt. At first one of my dinner guests thought I had spilt some dressing on myself. There is nothing like squeezing in a quick bag change, shirt spot wash and blow dry in the disabled toilets before mains arrive! Irritating leaks (anywhere out or at home), or those days where you can get a good seal or an overactive stoma during a bag change, when you are running late!  I am not sure anyone prepares you for that moment when you wake up 10 seconds too late, to a full bag of hot (you guessed it!) all over yourself…that has only fortunately happened once!

Despite all of that, I won’t let my ostomy define me….I still do everything I used to do before, including swimming – I have to confess, the night before my first trip to a public pool I sat in the bathtub for 45mins, to test that it wouldn’t fall off and even then I wore a wetsuit top into the pool just to be safe.  These days, I happily body surf or bodyboard with just a shirt and support boxers or band!

Ostomy supply firms are your friend! I ended up trying several different brands of bags, barrier rings and other products before settling on my trusted set of supplies.  Their newsletters are often full of useful hints and tips!

Social media is home to some remarkable people willing to share their experiences, offer assistance and help continue to raise awareness. In the early days it served as a reminder that living with a stoma – isn’t just for “old people!”

More recently I am trying to play a small part in breaking down the stigma and make a positive impact for other ostomates and trying to share my story and get involved in community groups.  I recently joined the board of one of the two Ostomy Associations in New South Wales to try and help fellow ostomates and make a positive difference to the way the Stoma Appliance Scheme is administered.  Not everyone knows that in Australia they operate as not-for-profit organisations and are staffed by a small number of dedicated employees and volunteers!

There are so many great awareness campaigns out there and many great organisations trying to make a difference; Bowel Cancer Australia’s #nevertooyoung, Crohn’s and Colitis Awareness Month, Ostomy awareness day just to name a small few.

…everyone regardless of their journey, personal story or willingness to be open about their stoma is a hero in their own way.

Bag, what bag?!

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