Travel has always been a huge thing for me, I love visiting new places, meeting new people and getting a sense of new cultures. My husband has said on more than one occasion we would be rich if I could just curb my passion for travel but where’s the fun in being rich if you couldn’t enjoy it. Pre ostomy I had spent six months in the UK working and partying and three months in Thailand backpacking and again partying. I had planned to travel until I was thirty and then settle down with the man of my dreams and start a family. Unfortunately, my body had other ideas and I spent my mid to late twenties in and out of hospitals enduring twelve surgeries which ended with permanent ileostomy bag just before my thirtieth birthday.
My world was shattered let alone my travel dreams and desires, I didn’t think that travel with an ostomy would or could be the same so I had resigned myself to the fact that I would never be able to achieve my dream of visiting all the continents and extended travel/backpacking would never be an option. So wrong, it's amazing the limiting beliefs we push onto ourselves as anything pre ostomy is doable post ostomy albeit extra planning and forethought may be required. Post ostomy, I have been back to Thailand, travelled to Bali, Malaysia and the US including all the major theme parks, and to top it off a clothing optional cruise through the Caribbean, something I would have never done pre-ostomy.
Below are some of the tricks and tips I have accumulated throughout my ostomy travel adventures. Note I am in Penang as I am writing this so the below is focused with my current trip in mind but most of these apply or can be adjusted accordingly.
I always like to get my bloods done pre-holiday to make sure there is nothing I should be taking extra note of while away. Generally, they are fine as they have been for the last few years since finding the right combo of supplements, electrolytes, and exercise.
Please note that some medications, especially class A drugs require you to have a letter from your doctor to bring them into the country. If you have any concerns about any medications you are travelling with, better to be safe than sorry.
So let the packing frenzy begin. Now, this isn’t a huge trip, six nights five days, so packing should be easy but since becoming an ostomate the anxiety around packing has doubled if not tripled. It may be easy to buy some toothpaste or a get another book but ostomy supplies are a whole different concern and running out is just not an option. As a general rule I will pack double the supplies I would normally use plus my normal emergency kit, there are two reasons for this, one is so that I have two identical kits, one will go into my luggage and the other will go into my travel companions luggage, this reduces the anxiety over lost luggage as you would have to have some seriously bad luck for both bags to go missing in transit. If you don’t have a travel companion, I suggest doing the same but putting one in your carry on with your emergency kit. Please note, if you do put your supplies in your carry-on, pre-cut all your bags as your scissors will be confiscated by airport security regardless of them being required for medical use.
Scissors must be in your stowed luggage, they are not allowed in your carry-on.
The other reason is that you may just need more supplies than you would if you are at home. The main reasons for this are I find is you are more active when on holiday, be it sightseeing, hiking or swimming. Now add potential weather and humidity changes which can affect the sticking factor and frequency between bag changes. So, in short, it’s better to be over prepared and go home with extras then to be caught with no supplies which could ruin your trip.
Check with the airline you are flying if flying as some do allow additional carry-on luggage when medically related.
Airports & Airplanes
There is so much excitement about the destination that the time spent getting there seems inconsequential until the first “Are we there yet?” thought pops into your head. I am not saying I’m a destination only person, as I do love a good journey but when flying beside the take-off and coming into land the rest is rather tedious, boring and/or potentially stressful if you add in connections and unknown destinations.
Most airports now have the full body scan devices which should show a grey blob where your ostomy bag is located. The first time this happened to me I would like to say I was a picture of composure but I wasn’t I cried. And what was worse was I had a onesie (jumpsuit) on so I couldn’t just show them and move on, they needed to take me into a closed room where I had to strip off and show the female security my grey blob. You think I would have learned from that experience not to wear something you can’t easily show your stoma but no I didn’t and I did the exact same thing but in a small third world country airport. An experience I will never forget after a lovely Thai security guard who couldn’t understand my medical explanations pulled on my rather bulging ostomy bag, promptly disengaging it from the wafer, to which a river of shite was the unfortunate outcome…
TIP: Never wear a onesie, jumpsuit or a dress through airport security, make sure you can always show your ostomy bag if requested by a security officer. Note: you can request a private room.
DID YOU KNOW that many of the appliance companies have ostomy related travel cards written in a variety of languages? Unfortunately Thai was not one of them. I would recommend checking to see if the country you are going to is already listed and if not, use google translate to do your own quick explanation in the languages from the countries you will be visiting, print them out and put with your passport.
ADD: Photos of travel tips from cards? Possible links
I was always a window seat and as close to the front as I could get girl pre ostomy/ulcerative colitis, however post ostomy I prefer the isle and if possible within three rows of the toilet. This avoids the issue of having to climb over or ask someone to move for you in the event that you need to empty or change your appliances.
Take-off and Landing
I used to believe that my bag would blow up and decompress during take-off and landing like some water bottles do when flying, it doesn’t it works the same way it always does, don’t quote me but I think it may have something to do with the filters.
I have never been good in confined spaces, I blame years of being locked in the toilet with ulcerative colitis so an airplane toilet would have to be one of my least favourite places in the world. Add splashback concerns to the flush with air and not water and well…. Fortunately, I’m a solution person and after some trial and error, I found a solution that didn’t involve sticking my hand in the toilet bowl to wipe down with toilet paper or blaming the person who went before me. My simple trick is first to add toilet paper to the bottom of the bowl, a nice little wad, then sit on the toilet seat backwards so that you are emptying your bag onto the wad of paper. The air flush will generally take the wad down with your effluent in the first flush.
The other trick I learned out of necessity is the ability to change your appliances on the plane if a leak was to occur. Find the toilet with the baby change table, this will give you ample space to spread out all your supplies and change your appliance, note that you will have to do it standing up, not always easy in a turbulent plane but possible.
Yay, you have finally made it, you passed through security, you survived the flight with little or no issues, now for the fun to start.
Again with the toilets, I thought that by getting an ostomy the toilet would be less of a concern, and it is I no longer have to live in it. However, this doesn’t mean that I don’t always need to know there is a toilet accessible to me when I do need it. The standard of toilets vary widely from country to country and some I have come across in the third world countries I regularly count my blessings that I don’t have to sit on it to empty my appliance, a bonus of those is that most have hoses attached so splashback isn’t a problem as you can hose the whole thing down post empty if required.
I always bring tissues with me when travelling as you never want to be caught without loo paper.
When traveling, getting sick is always the fastest way to ruin a holiday after running out of supplies, so looking after yourself is paramount. This can be easier said than done as everything is so new and exciting and there is often limited time so we often push ourselves to breaking point to ensure we are getting the most out of our holiday. I have learned that I need to pace myself, we generally try an active day and a rest by the pool or fire day depending on where you are. By taking the rest days I tend to get more out of and enjoy my active days more.
I wouldn’t say I’m a fussy eater but since getting my ostomy I am a lot more aware of what I can and can’t eat and going to a destination where the food variety can vary dramatically from what my body was used to is always a concern. If you have specific allergies or concerns and you are heading to a country where there may be a language barrier, it’s always good to learn a few key words that may aid you when ordering. For example, I can’t eat spicy food post ostomy, so I always how to say no spice or mild in the language of the country I’m in, along with thank you.
However, I found is that no matter where you go in the world there is always western food available, albeit not great western food but you would find it hard to find a place in the world where you can’t get a bowl of fries or a piece of chicken. Bacon, on the other hand, is not available in Malaysia and if they do tell you they have bacon, beware its beef or turkey bacon.
Hotel Appliance Changes
Whenever out of my comfort zone, anxiety around appliance changes always sneaks in but when in a hotel this used to spiral out of control to the point where holidays seemed more trouble than they were worth. Not the changing of the appliance per say but the disposal of the supplies, at home I would put it in my nappy disposal unit or if staying with at a friend’s I would take it straight out to the council bin but in a hotel that option isn’t very likely available to you, so the thought of leaving it in the bin room, most of which don’t have liners or a lid where an unknown person had to dispose of it for me was too much.
There was a simple answer to this, it just took a logical look at why I was so anxious about the cleaner who got the job of our room. My main concern was that they would know they were disposing of my poop bag. So the easiest solution to this was to get a non-transparent bag to dispose of the supplies. I also always empty pre change just to ensure the disposal bag is an empty and light as possible. Some suppliers actually supply these types of bags as part of their packs, Coloplast and Hollister to name two, both come with grey plastic bags, slightly thicker than shopping bags for disposal of products. I don’t use these when at home as I use a baby’s nappy disposal unit, so I have plenty saved up for traveling. If you use a supplier that doesn’t supply these, then the other option is to use doggy poop or baby nappy disposal bag, these are often scented but slightly more transparent so I would lay a piece of paper towel out in the bag pre disposal and when you tie up the paper towel surrounds your appliances and can’t be seen.
So we have come to the end of travel ostomy style, I hope I have put some of your concerns to rest and you are now getting excited about your next trip and exploring your travel destination possibilities.
If I have missed anything above, please let me know in the comments section and likewise, I would love to hear any travel tips you have come across in your adventures.
Happy and Safe travels x
Check out below for our recent holiday pictures from Penang, Malaysia.