ON THE ROAD: The specifics and practicalities of travelling with an Ostomy

Challenges and Benefits of travelling with an Ostomy

Easy is not the right word, however as I said in my last post, travelling with an ostomy turned out to be far less difficult than I had imagined.

HAVE BAG, WILL TRAVEL

The story continues …

And so, just 6 months after major surgery, Michael and I, and my new ileostomy were off for 10 months of adventure. There was a small part of me that held some trepidation about leaving Australia. I had relied so heavily on my family, close friends and doctors for support, guidance and strength for what seemed like such a long time. However with Michael by my side, and the knowledge of what we had been through and that we had come this far, I knew we would be okay. Much stronger than that slight apprehension was an overwhelming feeling of joy, exhilaration, incredulity and of course gratitude.

17 incredible countries!

As we travelled around the world, I wrote down thoughts about Crohn’s and about what it is like travelling with an ostomy. I wanted to do this for others with a stoma, to help with hints and tips on what to do and what not to do, and hopefully prove it can be very doable!

#UnitedWeStand2015 #WorldIBDday

Today’s post is all about World IBD Day, which is today! Held annually on the 19^th of May each year, World IBD day is led by organisations around the world, spanning 4 continents, in a unified effort to raise awareness and support for IBD.

Over 5 million people worldwide (including 75,000 Australians) live with Crohn’s disease and Ulcerative Colitis, known as inflammatory bowel diseases (IBD).

There are events happening across the globe, from community walks in Brazil or participating in the half marathon in Brussels, to information campaigns, lectures and presentations all over the world, selfies with toilet paper in Greece, and purple power in the UK, illuminating landmarks and encouraging everyone to wear the colour purple.

Everyone can get involved in the global video campaign encouraging anyone impacted by IBD (patients, carers, doctors, nurses, family and friends) to share their story via a 30 second video under the unifying theme “United we stand”.

I have joined in and here are my efforts!! I can’t wait to watch videos submitted from all over the world on the World IBD Day and Crohn’s and Colitis Australia websites and You Tube channels.

United we stand in our fight against IBD.

Decision made!

On the 17^th of September 2013, I made the decision. I’d had enough. I was sick of feeling sick all the time. I was sick of the pain, the anxiety, the daily struggle. I had grappled over this decision for months. Should I keep fighting? Should I persist? I know others who have put up with far more than me for far longer. Was I being weak? Was I being hasty? I had managed up until this point, but I was miserable. Was it really even a decision? To me, it felt like I had run out of options. Not for lack of trying. The last colonoscopy my gastroenterologist did he couldn’t even get a clear picture of my bowel. As soon as he wiped away the blood, within seconds more would appear. There might be new drugs down the track, but who knows when they might be available. It was now at the point, my gastro said, that there were other risks in continuing on as I was.

Home away from home

A week later, I was back in the familiar surroundings of St George Private Hospital ready to have it all removed! It was a huge decision. There was no turning back from this one – a pan proctocolectomy with end ileostomy. It was permanent. I already knew what living with a temporary ostomy was like, but this was something that I would have for the rest of my life, until I was hopefully old (and quite possibly senile!). After 5-6 hours on the operating table, I woke up heavily sedated with Ketamine and Morphine, minus a few pretty major body parts! Basically the whole shebang was taken, except for my small intestine, which is now redirected through a stomal opening on my abdomen where I poo into a nifty little bag, requiring regular emptying and changing.

Let’s start from the beginning . . .

SYMPTOMS, DIAGNOSIS + LETTING GO OF DREAMS

I’m not usually one who particularly likes talking about myself or being the centre of attention, but I think it’s important to start this blog with my story. To start from the beginning. I was born in Melbourne in October 1979…… ok well not quite that far back! Fast forward around 30 years. Up until that point I’d had a pretty regular childhood and upbringing. I hadn’t even been in hospital before.

Then not long after my 30^th birthday, the first symptoms appeared. I remember clearly the morning after a friend’s wedding in November of 2009, I went to the toilet and noticed blood in the toilet bowl. I didn’t think much of it at first, but it persisted for the next few days, so I thought I’d better go and see my GP. She didn’t seem overly concerned and told me to try taking some inner health plus for a few weeks to see if that helped. Several trips back to the GP and a few months later after a course of antibiotics and some stool samples, and she had referred me on to a specialist. Little did I know at that time what big a role this man would play in the next 4 years of my life!

On the loo … again!

I was diagnosed pretty quickly after that. After a colonoscopy and banding for suspected haemorrhoids, the symptoms still hadn’t abated, and within a few months I was told that I had Crohn’s disease. I had never heard of Crohn’s before and was really quite ignorant as to what it meant. I didn’t feel that bad, apart from the blood in my poo. Even the fact that it was chronic didn’t really register with me at first.