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.

Arranging and carrying supplies:

Pre-departure, the biggest challenge was getting the supplies in order. Working out how many bags, how many adhesive removers, how many barrier wipes I needed, and where on earth I would pack them all for 10 months! Luckily I managed to stocktake supplies for a few months before we left (not using my monthly quota that are very kindly supplied by Ostomy NSW through the Australian government), so I had plenty to keep me going. In fact, I ended up taking far more than I needed!

For the medication (I still take Imuran for precautionary reasons), my gastroenterologist organised special regulation scripts that allowed me to get additional bulk supplies to cover me for the trip duration. I took a minimal supply of Prednisone, antibiotics and pain medication (just in case), and Clexane injections for before any long haul flights (due to my history of pulmonary embolism).

Too much luggage!

I managed to fit everything into a small bag that met airline carry on restrictions (I didn’t want to risk checking them in), with letters from my doctors and stoma nurse explaining a stoma and my need to carry supplies and meds. Not once in the entire 10 months did we have any problems with airport security, nor were even asked what was in the bag. On one occasion I did beep going through the metal detector at an airport. After a pat down, the female officer lifted up my shirt discreetly, saw what it was she had felt, and we were on our way.

Admittedly, the extra bag was painful to lug around. Walking for miles with my huge heavy back pack as well as the bag of supplies was tiring and hard work. I often bemoaned the additional bag, but if we’d been robbed, I would have held onto it for dear life and probably even let them take my passport and credit cards over my ostomy supplies!

I was a bit worried about leaving the bag in luggage storage, non-airconditioned hotel rooms or in the back seat of the car when we hired cars in several countries. Heat and humidity can diminish the adhesiveness of the bags, but we were conscious never to leave them too long, and they were fine.

Emptying and changing the bag in foreign places:

Emptying the bag was no issue. When I had to empty, I could do it anywhere. It really didn’t matter where or what the state of the toilet was like, and we all know how lovely some public facilities can be! It’s a bit like the old Victoria Bitter (VB) beer ad! I emptied on a plane, I emptied on a train, I emptied on a ferry in the Greek Islands, and I emptied on a house boat on the Seine in Paris. I emptied on a portaloo in Poland, I emptied in squatties throughout Asia, and I emptied in hundreds of hotel, restaurant, pub, museum and public toilets all over the globe! I have a whole separate blog post I will dedicate to toilet trivia around the world!

Changing the bag was not a problem either. Every hotel, Airbnb guest room or anywhere we stayed always had somewhere suitable for changes. I used to think it was gross if I didn’t change my bag daily, but that gradually stretched to every other day, and sometimes even extended to as long as 4 or 5 days. It’s perfectly fine! It doesn’t smell, and it actually seems to stick better after a day or 2!

Food glorious food

Food, glorious food:

For us, one of the joys of travelling is trying all the amazing cuisines on offer, and our trip certainly did not lack some incredible food. For years I was too afraid to eat, couldn’t eat certain things, or just didn’t have an appetite. I well and truly made up for this during our travels! Of course I have to be careful about what and how much I eat, and chewing properly, but I can now basically eat anything I like. Some foods and drinks go through me much quicker than others, and sometimes my bag goes from being completely empty to full within 5 minutes. The worst culprits for me are apple juice and white wine.

There were several occasions I was caught a little unawares with a sudden full, heavy bag that I had to hold up for kilometres as we walked to find a toilet.  I particularly recall the walk back after our Paris picnic. We’d shared a bottle of Rose as we watched the Eiffel tower sparkling, and for our romantic walk home along the Seine with the glittering lights of Paris and her beautiful monuments around us, instead of holding hands, I was cradling my very full bag of poo! I also had numerous incidents of balloon bag thanks to poor food choices causing prolific gas (such as the lentils in Umbria)!

Balloon “gas” bag

What about diarrhoea?

I was incredibly lucky that I only had one real bout of “diarrhoea” on the whole trip. It was on our second last day in Bangkok. Fortunately a friend had organised a fancy hotel for us, so at least I could stay in the comfort of the king sized bed and nice clean bathroom. It’s a very strange feeling having diarrhoea when you don’t have to evacuate your bowels on the toilet! I had the sick feeling in my stomach and couldn’t keep anything down, but I didn’t have to rush to the toilet to poo. I just had a constant stream of liquid emptying into my bag, and as soon as I’d drained out one lot, within no time it was full again. This is one example of where having a stoma bag could actually be seen as a benefit. Unlike the many times over the past few years that I have had accidents because I couldn’t get to a bathroom in time, at least with the bag, it is rare that there is ever any super-duper urgency to rush to find a toilet. It’s all kept relatively clean and tidy. In fact, I would say that Mikey’s toilet urges were more of an issue than mine over the trip. We went to the most expensive toilet in the world in Milan where we paid 8 euros for 2 espressos just so Mikey could use the toilet!

Seeing doctors / blood tests overseas:

Apart from the odd cold and a tooth extraction in Prague, the only visits to doctors during the trip were for some customary blood tests I knew I would require for the medication I am taking (Imuran). I had a letter from my gastro back home explaining what was required. I contacted the CCA equivalent in the UK who put me in touch with an IBD nurse at one of the big gastro hospitals in London. She was extremely helpful but basically because it was not an “emergency”, it would not be covered in our reciprocal health agreement, and my travel insurance did not cover anything related to Crohn’s or surgery as it was pre-existing. I ended up having the first blood test in Rome, where a friend who lives in Italy put me in touch with an international hospital. Despite my very limited Italian and their very limited English, I had the blood test performed on the spot (no gloves used!!!), and the results emailed to me within a few hours, which I then forwarded to my gastro in Australia. It cost over 100 Euro, but I was astonished how relatively easily we managed to have it all organised, and how efficient it was. The second test was in Paris, where I found an international travel vaccination place online who via email said they would be able to perform the blood tests we needed. Again, the language barrier slowed things down a bit, but after a bit of backing and forwarding, we got what we needed. This time we had to go back for the results, but it cost less than 30 Euro, and there was plenty of sightseeing to do nearby while we waited!

All in all, I think this list of what started off as potential challenges of travelling with an ostomy, has become more a sharing of my mostly trouble free observations (hopefully with a few funny anecdotes thrown in), and an added component to the overall travel adventure!

I know it can be pretty daunting at first, but I hope I’ve shown that whilst there may be a few challenges and even hiccups along the way, they are nothing worse than anything else we’ve overcome, and they are well worth it to be able to experience the joy of travelling!

TOP TIPS / TRICKS OF THE TRADE:

• Always carry DOCTOR’S LETTERS and documentation with you, and take majority of supplies and medication as carry on. Split up some supplies into main luggage as well – just in case.
• BOOMERANGS can be a lifesaver too and enhance bag longevity by at least a few days!

  

  Must packs!

• Carry a travel HAIRDRYER – great for heating up the adhesive for extra stick giving longer life, sturdiness and endurance to each bag for added security, and super handy for drying off after a swim/shower (especially if you’re not changing your bag right away)
• EMPTY whenever you have the chance. Even if it doesn’t need emptying – get rid of what’s in there, as you never know how far away the next toilet might be.
• Don’t stress. Everywhere in the world there are toilets of some form or another, and you can make do with anything. Even in a foreign country where English is sparse, you can always get across an understanding for needing to use the facilities. Carry around TISSUES and WET WIPES though!
• LISTEN to your BODY. Rest when you need to. Eat whatever you feel like within reason. You know what your stoma can and can’t process. Drink lots of water. All of these are common sense for anybody with or without a stoma!
• Most of all, relax and ENJOY!!!