If you’d told me a few years ago that I’d be travelling all the way to Orlando, Florida for two weeks, visiting Walt Disney World and Universal Studios, going on rollercoasters and spending days at water parks with my stoma, I probably wouldn’t have believed you!
Can you still go on holiday with a stoma?
Having a stoma doesn’t mean you have to put your travel plans on hold, but I know that travelling abroad can feel a little overwhelming, especially if it’s your first long-haul flight. There’s lots to think about: from packing enough supplies to worrying about leaks, airport security and how your stoma will cope in a completely different climate.
I’ve recently returned from the most amazing two-week trip to Orlando, Florida. I wanted to share how I prepared, what I packed and the little things that helped me feel confident before setting off on our adventure.
Packing double the stoma supplies
My biggest rule when travelling with a stoma is to pack double the amount of supplies I think I’ll need. I would much rather come home with extras than risk running short while I’m thousands of miles away!
For Florida, I packed plenty of stoma bags, eakin freeseal®, REFRESH 3in1 spray, dry wipes, black disposal bags and baby wipes. I made sure I had everything I normally use in my daily routine, plus extras in case I needed more bag changes than usual.
Another little tip of mine is to place an order for supplies just before going away. This means I have plenty to pack for the holiday while also making sure I have supplies waiting for me when I get home. There’s nothing worse than returning from a holiday and immediately worrying about whether you have enough supplies left!
I find that making a checklist of everything I use during a normal bag change is really helpful. It means I can tick everything off as I pack and feel reassured that I haven’t forgotten anything important.
My medical hand luggage allowance
We flew with TUI, so I always make sure to ask about the additional baggage allowance for medical supplies before travelling.
For my trip, I planned around the extra 10kg medical baggage allowance available for bringing supplies on board, but I would always recommend checking the current policy directly with your airline before you fly, as allowances and arrangements can be different.
Having that extra space made such a difference because stoma supplies can take up quite a bit of room, especially when you’re packing double!
I kept my supplies together so they were easy to find and I made sure my essential items stayed in my hand luggage rather than relying on my checked-in suitcase. That way I knew they would be with me throughout the journey.
My little emergency bag (with a Disney twist!)
As well as packing my main supply bag, I always put together a smaller bag specifically for travelling. This is something I would recommend to anyone with a stoma, especially if you’re facing a long-haul flight.
I pack one complete stoma bag change, along with the other essentials I might need if I had to change my bag during the journey. That way I don’t have to get into my larger supply bag or rummage through my luggage if something happens while I’m on the plane.
For Florida, I had a little Minnie Mouse bag, because of course I had to add a bit of Disney magic!
I used it on the plane and then took it around the theme parks with me as well. I never knew when I might need to change or top up my supplies, so having my little emergency kit with me meant I could relax and enjoy myself knowing I was prepared.
It doesn’t have to be anything fancy. Just find a small bag that fits your essentials and is easy to carry around with you.
Getting ready for the flight
We stayed in a hotel next to the airport the night before our flight, which gave us a little extra time to get organised without rushing around on the morning of departure.
One thing I always do before a long journey is have a fresh bag change. I changed my bag that morning so I felt clean, secure and ready for the flight ahead.
I also make sure I have my loperamide with me. It’s something I use to help manage my ileostomy output and I find it helpful when preparing for a long flight. I took it before travelling and planned around the first meal on the plane too.
Everyone’s stoma and medication routine is different, so it’s important to follow your own prescribed or agreed advice about when and how to take medication.
For me, having my supplies packed, a fresh bag on and my usual routine sorted helped me feel much more relaxed. Instead of worrying about what might happen during the flight, I could focus on the excitement of finally heading to Florida!
Would the Florida heat affect my stoma bag?
I’ll be honest, this was something I was a little nervous about before we went.
Florida is known for its heat and humidity and I knew we’d be spending long days outside at Disney, Universal and the water parks. I wondered whether the heat would affect how securely my bag stayed in place, especially with all the walking, rides and swimming.
But honestly? I had nothing to worry about!
Each morning, I made sure my bag was secure and used an eakin freeseal® underneath as part of my usual routine. I also made sure I had my supplies with me throughout the day. If I had my backpack, they went in there, or if I was carrying a smaller bag, I popped them into my fiancé’s backpack.
That way, I always knew I had what I needed nearby, even when we were spending hours in the parks.
I also made sure to stay hydrated with electrolytes and listen to my body, particularly in the heat. With an ileostomy, it’s important to be mindful of fluid and salt losses, so I made sure to pay attention to what my body needed throughout the day. I carried around my Free Soul electrolyte sachets and also bought some Liquid I.V. sachets whilst there too.
The biggest thing I learnt was that I didn’t need to let my worries stop me from enjoying myself. I prepared for what might happen, took the supplies I needed and then got on with making the most amazing memories.
Taking my stoma to Disney and Universal
We had so much planned for Florida, from exploring the theme parks and going on rides to spending time at the water parks. I didn’t want to spend the whole holiday worrying about my stoma and I certainly didn’t want it to stop me from doing anything.
Having my little Minnie Mouse emergency bag with me was a simple thing that made me feel more confident. I knew that if I needed to empty or change my bag, I had my essentials with me.
I also looked into accessibility support at Universal Studios before travelling, which helped me feel more prepared for the long queues and the practicalities of spending full days in the parks.
And yes, I wore my bikinis and enjoyed the water parks too! Having a stoma doesn’t mean you have to miss out on swimming, holidays or wearing the clothes you love.
My stoma has been through so much with me, and sometimes it’s easy to focus on the things that make life a little more complicated. But this trip reminded me of everything it has made possible.
My biggest piece of advice: preparation gives you confidence.
Looking back, I’m so glad I took the time to prepare before we travelled. Packing double my supplies, ordering extras before we left, checking our airline’s medical baggage arrangements and keeping a little emergency kit with me meant I could enjoy our holiday without constantly worrying about what might happen.
Of course, everyone is different, and what works for me might not be exactly what works for you. But if you’re planning your first long-haul holiday with a stoma, I hope sharing my experience helps you feel a little more confident about taking that next step. My stoma never stopped me from enjoying Florida. If anything, it gave me the chance to live this trip and make memories that I will treasure forever.
It was honestly the most magical, amazing holiday I’ve ever been on, and I’m already hoping we get to go back soon. I can’t stay away from the Disney magic for too long!
So, if you’re sitting there wondering whether you can go on that big adventure with your stoma, let this be your reminder that you absolutely can. Prepare, pack those extra supplies, take your little emergency bag and go and make those magical memories.
Life with a stoma can still be full of magic, adventure and so many amazing firsts. And I can’t wait to see where mine takes me next.
