World Ostomy Day, taking place on the first Saturday of each October, is an opportunity to raise awareness and celebrate the medical procedures that help keep us alive.

What is a stoma?

A stoma is a surgically created abdominal opening that connects to the digestive or urinary systems for the safe elimination of waste.  This procedure is done for many reasons - from bladder and bowel cancer, to Inflammatory Bowel Disease to obstructions and paralysed organs. 

Colostomy: A colostomy is formed from the large intestine.
Ileostomy: An ileostomy is formed in the small intestine. Typically, ileostomies involve the removal of the colon (a total colectomy), but in circumstances where the colon is not diseased, it may be preserved and detached from the small intestine (a loop ileostomy). 
Urostomy: A urostomy is formed by removing the bladder and attaching the ureters to a small piece of bowel that is stitched to the external abdomen. 

These procedures are life-changing, and often bring an incredible increase to a patient’s quality of life. However, there is still significant stigma around ostomies and their humans. Due to this, many ostomates experience severe depression following the placement of their stoma. 

The feelings of shame, failure and ugliness are a function of a society that demands we hide our differences behind closed doors. 

As ostomy awareness advocate and TikTok creator @ShayShitsInABag said “Ostomy awareness is suicide prevention.”

So, we use World Ostomy Day as an opportunity to share our experiences and raise awareness. Awareness and representation are life-saving.

My experience

Before I share my story, I want to make a big disclaimer: this blog is not meant to be inspiring. It’s meant to educate and bring awareness to a topic that is rarely talked about outside of disability spaces. I want to show that ostomies are normal parts of life - because my normal is going to be different from yours. Everyone’s normal is different. 

I started experiencing constipation at 14 years old. I was young; struggling with an eating disorder and a predisposition to nerve damage. Over time, it only just got worse, so I went to my GP. I was 15 years old when I sat in my doctor’s office being told that what I described was impossible. I was told to take more over-the-counter laxatives - despite the fact that they are not a long-term solution, and actively cause nerve damage when used for long periods of time. 

I bounced around gastroenterologists for years, who all reassured me “well, it’s not Crohn's!” and then shrugged their shoulders.

It wasn’t until I was 21 that I finally received a diagnosis - colonic inertia. Essentially, my bowel is partially paralysed with very little nerve function remaining.

Starting with a Stoma

For medication to work for colonic inertia, it must have nerves for it to act upon. Years of laxative use had destroyed the little nerves that I had left - and suddenly, I was only able to poop every three weeks.  I lived my life extremely bloated, with a rock-hard abdomen and severe pain on eating. I changed my diet to incorporate countless food restrictions that offered slight relief, and I started drinking meal replacement drinks instead.

Out of sheer desperation, I had a surgical consultation. Terrified of the idea of pooping into a bag, I opted for a minimally invasive surgery known as a ‘cecostomy’. This surgery places a small tube into the first part of the small intestine, allowing the ostomate to inject medicine directly into the bowel. This is, essentially, an enema from the start of the bowel (instead of the rectum.) 

I felt so much shame about my stoma. I was terrified - that I would be judged, that I would be laughed at, that I would smell bad and worst of all, that I wouldn’t be loved by anyone ever again. It felt like I was making a decision that would introduce a greater quality of life medically, but shut so many doors romantically.

When I finally returned to my Sling and Lyra classes, I felt like I was hiding a horrible secret. I had to wear high-waisted undies so no one would see. I had to be quick when getting changed, blocking myself off in a corner as I hurriedly put stockings on. 

But one day, I felt the greatest shift in my perspective. I don’t know exactly what happened - but I think it was largely due to seeing other students with ostomies at the studio, and being able to talk freely about the changes my body was going through. I started wearing clothes that were more revealing, and I didn’t care who saw it. I even felt comfortable answering questions from other students about it.

From Irrigation to Ileostomy 

Unfortunately, the cecostomy was not a long-term solution for me either. The irrigation method involved injecting stool softener and boiling water into my bowels. It felt excruciating, and with little bowel function left, started to cease working. I felt trapped by my own torturous bowels once again. 

I had been thinking of getting an ileostomy for a while, but it requires a lengthy recovery period. I was finally making progress in my aerial classes, and I was terrified to lose it all.

But then, Sydney fell into another lockdown. 

During the first week, I was still coming to work to code our online store - and after multiple failed irrigations that left me with my poo and one litre of enema fluid trapped inside of me - I was done.

In one incident, I was laying flat on the floor of the studio, cradling my tummy, and trying not to vomit. 

Afterwards, I sat on the toilet, head in my hands with tears streaming down my face from pain, swollen from vomiting, and swore that if lockdown got extended, I would get an ileostomy. And then, the lockdown was extended. So, I got a loop ileostomy.

Recovery was hard, and honestly, it was made harder by the fact that we were in lockdown. After a week in hospital, I was discharged into my small one bedroom apartment - in an area that had just been made into an LGA of Concern. I couldn’t have friends come and support me. I was diligent before the surgery - booking support workers to come and look after me for a week, cooking me dinner and making sure I got out of bed.

But then, due to the impacts of COVID, both of my support workers had to cancel their shifts. I got through the week, withdrawing from my antidepressant that surprisingly could not be absorbed without a colon. It was undeniably tough, but I came out of the other side of it in a much better place than I have been in for my entire adult life.

As of writing this blog, I am 7 weeks post-op. I am back at work (after moving house to an LGA with less cases!), and my swelling has mostly gone down. I don’t experience much pain anymore. I have so much more free time! My toilet is no longer a throne of torture and dread. Most importantly, my quality of life has increased so much. I look back on the life that I was living, the pain I was experiencing and the time I wasted stuck on a toilet in complete disbelief.

I feel like I am living in a completely different worlds. For the first time, I feel like it is possible to build a healthy, positive relationship with my body and mind.

I am lucky, because I had the opportunity to start coming to terms with my changing body before the changes were made.

Most ostomates experience an incredibly quick turnaround. They’re often sent to the Emergency Department, requiring emergency surgery to place their stoma. For these individuals, it can be exceptionally difficult to come to term with the changes. It’s normal to need time to mourn for the life you didn’t get to live.

Life is different now; it isn’t bad, but it takes some time to adjust.

I am incredibly proud of my body, and the things it has been through. My ileostomy has given me so much life, and this World Ostomy Day, that is something that I want to celebrate.

A year ago today, I never thought that I would ever feel sexy or comfortable in my own skin because of my stoma. A year ago today, I felt an abyss of shame and despair inside of me, radiating from my stoma and engulfing my entire body. Like a shadow monster, the dark abyss feasted on my life-force.

Today, I stand before you, wearing revealing lingerie, showing off my Disabled body. This distinct change in perspectives would not be possible without the work of other ostomates, who stood proud before me, delightfully unashamed of their bags.

My bag is a part of me. Just like my heart, my lungs, and my brain - my stoma keeps me alive.

If you take one thing away from this blog, I want it to be that representation saves lives. I put off important, necessary and appropriate healthcare because a lack of representation made me feel like an ostomy would be a death sentence; that my life wouldn’t be worth living. In fact, the one and only time I have ever seen a model with a stoma when online shopping, I started crying. I was so happy to see a body like mine - dressing sexy, being portrayed as happy and free (rather than miserable and alone!).

Together, we can take a step forward in the right direction, and strip away the shame and disgust we use when talking about Disabled bodies.

Finally, after all these years, I have control of my life once again, and I am so excited to see what I do with it.