Chronic Illness Hasn’t Stopped Me Travelling The World With My Ileostomy Bag, Twice.

Back in May 2015, after working for 25 years in the luxury fashion industry, I realised the only thing I needed to change was absolutely everything.

And so I took the bold decision to sell my flat and go travelling in Asia. Travelling was a big decision in itself but I also had to consider how it would be possible with my ileostomy bag.

When I was 17, in 1987, I was diagnosed with Crohn's disease. Over the following 12 years my health massively declined. I spent long periods in hospital undergoing multiple surgeries to remove various parts of my small intestine. At 29, my large bowel ruptured and after nine hours of lifesaving surgery, I came round to find I had an ileostomy bag.

An ileostomy is similar to a colostomy but is dependent on which part of the bowel is removed. My large bowel was removed and part of the remaining small bowel (ileum) was brought through a hole on the right-hand side of my abdomen. My waste passes out of my ileum and collects in a bag that is stuck to my tummy. So basically I poop in a bag; something that can make using unsavoury toilets a whole lot easier!

As I have no control over my output there is a fastening at the bottom of the bag which allows me to empty it regularly throughout the day, so I’m always aware of where the nearest toilets are. I change the whole appliance every two days and it was this part of the process that required a lot of planning once I had made the decision to travel. How was I going to get the quantities of equipment I needed? And how would I manage to bring them with me?

I started by visiting my doctor to ask for his help; he didn’t have any concerns with my travelling but providing the quantities I needed was going to be a challenge. He wanted to help me but his hands were tied; little did he realise how tenacious I am! I don’t see why my ileostomy should determine how I live my life – after all, I would use the same amount of equipment if I were to stay in the UK. With my doctor’s knowledge I ended up finally getting the okay from those above, and I was given enough supplies for six months.

Next hurdle: how was I going to carry all of my supplies? I contacted various couriers to see if they could send them out to me along the way. Unfortunately, I was told that because of the quantity and the countries I was planning on visiting, I would need an import licence or, in some cases, a letter from the Department of Health. If sent without the correct paperwork, they couldn’t guarantee it wouldn’t get stuck in customs – a potentially messy risk I wasn’t willing to take! So the only way was to bring everything with me.

I eventually found a way to pack six months' worth of the stuff I needed. It took about three hours as I needed to unpack everything, then repack in large vacuum bags to downsize the volumes, but at last it all fitted in a carry-on case. I'm not one for travelling light but the amount of luggage I have to bring on my trips is a permanent reminder not to judge others; I may look like a high maintenance princess but it’s actually more my special needs.

One of the things I did before I left was to write out a list of my fears. It included spiders, snakes, getting food poisoning, ending up in hospital, my medical supplies getting lost...the list went on! It was a great exercise as it helped me plan for some things and adopt a positive mindset for the rest. Anyone with a pre-existing medical condition knows how difficult it is to get insurance so I wasn’t actually covered for anything ileostomy-related but I made sure I had enough money to get home fast if needed and had good cover for anything else.

Having a plastic bag stuck on my tummy, I can really struggle in the heat; dehydration can be a massive challenge so I decided not to put myself under any pressure. If I found I was struggling too much then I could always come home. The six months' worth of supplies meant I had a little leeway if I decided to stay longer.

I had the most incredible, life-changing time on that first trip, exploring the Himalayas, Thailand, Vietnam and finishing back in southern India. Needless to say, I was having so much fun that the four months I had planned for turned into six.

Towards the end of that trip I realised that if I’d had enough supplies, I would have stayed longer so I decided to go home, get enough for a year and take off again. The problem this time was how I was going to manage a year's supplies. I can’t use a rucksack because of the straps around the stomach so that would mean having two carry-on cases and my suitcase! Fortunately my wonderful sister agreed that wherever I was at six months, she would join me, bringing one of my carry-on cases – it didn’t take much to persuade her to meet me in Bali.

This second adventure took me to Sri Lanka, Singapore, India, Indonesia and Thailand. There are too many life-affirming moments to mention but some of the best were watching the sun rise over the Taj Mahal, a three-day boat trip around Halong Bay, volunteer teaching, whale watching, earthquakes and erupting volcanoes in Bali, deepening my yoga and meditation practice, seeing Komodo dragons and sharing time in Indonesia with my sister.

Some of the worries on my list of fears did happen, as did other things I hadn't even thought of but guess what – I dealt with them all and became stronger and more resilient because of them. I still don’t like spiders but I no longer run from the room. I did have a couple of overnight stays in hospital for food poisoning. I know the signs and can go downhill really quickly due to dehydration so I couldn’t risk leaving it too long. I got in a taxi, checked into the local hospital and got hooked up to some fluids and antibiotics. Fortunately on both occasions, although still a little weak, I was out and eating again within 24 hours.

I made wonderful friendships, sharing tears and laughter with incredible humans but the relationship I’m most grateful for is the one with myself and my bag. These adventures have given me a stronger sense of self, and shown me resilience I never realised I had. I have immense gratitude for my body and all we have been through together on this journey of life.

My bag hasn’t stopped me from going anywhere or doing anything. I would encourage anyone who has never travelled on their own to step out and try it. It is quite simply the best thing I have ever done.