Interview with Rourke, Founder of Life after Billy

I'd like to introduce you to Rourke founder of Billy the Bag, adeptly rebranded to Life after Billy after having her ostomy reversed earlier this year. Rourke has Endometriosis and after a routine laparoscopy went septic due to a perforated bowel, hence billy the bag was born. Rourke had a rollercoaster of a ride in and out of the ostomy world, having a colostomy, an ileostomy and a reversal all within 13 months, this I believe gives her a unique perspective and has earned the respect of many followers in both the Endo and Ostomy worlds.

Tell us a bit about your story. Did you know you had gone septic? Tell us how long did it take for the sepsis to be diagnosed?

I'd recently had a laparoscopy in the hopes of getting rid of or at least easing, painful symptoms of Endometriosis. I started getting some strange abdominal pains afterwards. They were somewhat bearable; they came in waves and often knocked me to the ground but in between, I was laughing it off - my coping mechanism for most things! My mum came over, took one look at me and decided we were going straight to the hospital. I can remember bickering with her in between the waves because I was wearing ugly PJ’s and didn't want to leave the house in them, what should have been the least of my worries!

After being admitted I had a CT scan and was told the results would be back in an hour or so. I remember getting back to my room and almost immediately being swarmed by doctors. I was basically told by a surgeon that if we didn't head straight to surgery, I wouldn't be around in a couple of hours. The pain was unbearable. When I say unbearable, I mean imagine the worst pain you've ever felt and magnify it. At the time I had no clue what was going on, all I knew was that I would do whatever it took to get rid of it. Not to be over dramatic, but at its peak, I was in so much pain that I wished for death. I just wanted a way out.

What’s most important about your story?

It sounds cliché but I think the most important message of my journey is determination. No matter how much pain I'm in or how rough things get, I am determined that this journey will not be for nothing. I'm determined that something positive will come from this and I am determined that I will not be defeated.

How soon after getting an ostomy did you start Billy the Bag?

Days after! I'm pretty open about most things and my friends and family all have a dirty sense of humour,  but for some reason I just couldn't find the words to tell people verbally what had happened.

I've been a strong writer since I was young. I found that by starting my blog it was easier to tell people what had happened. It was super therapeutic too. I decided from the very first post that Billy the Bag would be for me. It didn't matter how many people read my blogs or followed my page, it's main purpose was always to help me cope.

Would you encourage others to start a blog?

If writing is your release then go for it! If you're not ready to share your thoughts publicly, I strongly recommend journaling. If you don't find that writing helps you make sense of what's going on, it's important to find another way to cope that helps you. Maybe it's music, creating video logs or talking it out with someone. I don't care how you do it but please do, it's more important than you realise at the time.

Can you name some of your favourite bloggers and explain why they are your favourites?

To be totally honest, I don't follow many bloggers at all! When I first created my blog, I actually didn't know anyone blogging about life with an Ostomy or Endo. A day or so later, one of my nurses introduced me to a page called "Bag Lady Mama" written by Krystal Miller. When I first became an ostomate, Krystal's posts helped me feel far less alone and I will always be so grateful for that!

As I've settled into ostomate life and found my blogging groove there have been a couple of blogs I've been drawn to, my favourite being Emma Carey on Facebook and Instagram. Emma had a skydiving accident and describes herself as "the girl who fell from the sky." She acquired a spinal injury from the fall and had to learn to walk again along with facing a tonne of other complications. All the while, Emma's blog radiates light, laughter and a motivational kick up the butt!

How easy has it been to transition your BLOG from Billy the Bag to Life after Billy?

I've found it a little difficult. After my reversal, I felt like I didn't have anything worthy of sharing anymore. I'm not broken and I'm not fixed. I just am. Honestly, I'm still floating around in that stage but I'm determined to continue writing about my journey, you haven't heard the last from me!

You had both a colostomy and an ileostomy, what were the key differences you found? Which did you prefer?

Having both a colostomy and an ileostomy makes me feel totally qualified to answer this, and I'll say a colostomy for me was easier HANDS DOWN!

Colostomy output is far more solid, like regular poop whereas an ileostomy is practically all liquid with a couple of food chunks haha! The consistency of output from a colostomy meant leaks weren't as often, although they still happened. I found leaks far more common with an ileostomy as the liquid could find its way under the base plate. The colostomy output was usually once or twice a day, unlike an ileostomy which is pretty consistent and therefore far more high maintenance.

Who do you find you connect with more your Endo or ostomy followers, has this changed over time?

Overall, most of my blog posts attract followers who have an Ostomy. I think this is because there's still an aura of mystery and stigma around having an Ostomy and a misconception that they are for older people. Having an Ostomy isn't something that tends to be discussed in frank detail so I think my blog provides a safe space for ostomates, especially younger adults, to share their experiences and laugh along at mine.

Although a smaller group, followers from the Endometriosis community are ridiculously loyal! My Ostomy journey started after a laparoscopy for Endo. I think this hits close to home for many endo sisters and serves as a reminder to others that this could happen to any of us.

Post Billy, how has your health been? Mental Health?

To sum it up in one word; huge bloody roller coaster. Ok that's four but still, where the heck do I start?! For 18 months my life consisted of complications, dehydration, bowel obstructions, appointments, Ostomy supplies and surgical dates. And then it stopped.

I can still remember how I felt after my last surgical appointment. As soon as I stepped out of the office and into the fresh air, I started crying. I climbed into the car, shut the door and I cried. I didn't just cry, I bawled. I started and I just couldn't stop. "Things will improve over the next 12 months, but they won't ever be normal again." Those were the surgeon's words.

“What the hell happened to me? How did this happen? Why did this happen?”

Those next few weeks were something else. My calendar was far too quiet and I had no idea what I was meant to do. I became lost within my own mind and it wasn't until I scratched rock bottom that I realised things probably weren't great, but I slept it off. At least I thought I did until it happened again. I lost myself. I wasn't sleeping, wasn't eating, and wasn’t exercising. One day, I cracked. I lay on the couch next to my partner and cried for hours. That was the day I decided to get my crap together.

I committed to dragging my butt to the gym after work most days and hammering my body. I would leave exhausted but content. The gym has been, and is, my therapy. Whenever I can't be bothered working out I remind myself of how good I feel afterward, both mentally and physically, and it keeps me coming back for more.

I'm still not entirely sure where my life's at but now I know what my priorities are; my health, happiness, family and a handful of friends. These are what get me up in the morning, push me through the rough days and help me enjoy the good ones.

Any other advice the readers?

Life isn't fair, it just isn't. Some days will suck but I promise you, if you look hard enough, you will find something beautiful in each one. If you can do that, you'll never truly have a bad day again.

Thank you, Rourke, for your honesty and your time. Sepsis is a scary condition that can lead your life down unexpected paths, somedays it is hard to consider yourself one of the lucky ones but the courage Rourke has shown in the midst of these extraordinary circumstances in no small feat. You should be proud of what you have achieved, as it's not how far we fall or for how long we are lost, the important part is that we do get up and find ourselves again. I know we haven't seen the last of Rourke and that her Life After Billy is going to be as extraordinary as she is.