Awareness, Life With A Stoma

Flying With A Stoma

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One thing that ostomates may find difficult to arrange is a holiday via flying and aren’t sure what to do with their ostomy supplies and medication.

Before flying , I like to get everything organised at least two weeks prior to flying so nothing is left last minute and I end up forgetting something. It’s important to check the regulations of the air service you are flying with on what you can and can’t take in hand luggage. Many ostomates don’t know that you can actually take your supplies with you in hand luggage but you must have either a doctors letter or you can call the air service and let them know, they then put this on your flight reservation notes. This avoids having to leave them behind as I almost had my stoma stuff put in the bin at security in 2017 when I flew to London.

So what did I take in hand luggage?

  • Hand sanitizer 100ml
  • Phone charger
  • IPad
  • Purse
  • Medication
  • Doctors letter
  • Stoma supplies
  • Walking stick

I also took my dressing gown as I couldn’t fit it in my suitcase (woopsy!) My doctor’s letter was required as the type of medication I am on has had new laws put in place which means it is a controlled substance. The letter cost £10 for my GP to do and although it may seem a bit odd to pay for a letter for medication however had I not had my letter and something went wrong, I could end up with no medication and go into withdrawal which believe me it is the WORST thing to ever go through.

Just before going through security I went to the assistance desk and asked for a lanyard after seeing some ostomates in the Colostomy UK Facebook group with one when flying. When I called prior they also put assistance with walking and boarding the aircraft incase my joints lock. You must be wondering what is a lanyard? A lanyard looks familiar to a USB stick neck holder except it has a purpose. It represents hidden disabilities which has the aim to make travelling more friendly and accessible for everyone. Aberdeen Airport also offer a service prior to flying which gives you a tour of the airport and travel plans so you are more familiar with your surroundings and on where to go. The Airport launched their new hidden disabilities lanyards in partnership with Friendly Access in 2017.

The lanyard helps those with a hidden disability to enjoy their travel experience and to make your time travelling as stress free as possible in a hectic environment. They act as a discreet indicator that the person flying has a disability to airport staff to easily spot who may be in need of support. They are very useful for when you are going through security search areas of the airport. I think this is a brilliant scheme put in place for all people who suffer with an invisible illness and it also means that they don’t have to write or say all that they suffer from to anyone in public. Lanyards can be requested at assistance areas of any airport if you go to the desk and ask for one.

When on the plane, your ostomy bag may balloon as it fills with air due to the air pressure so always make sure your ostomy bag is empty prior to boarding the plane as it does make a bit of difference. The aircraft has a toilet so if the ballooning concerns you, you can let it out in there. Many people with anxiety find flying quite a nerving experience and as someone who hates flying, my anxiety does suffer. I used to get a relaxant from the doctor but now I like to distract myself with a book, music or a film on my iPad.

The next airport I go to is Birmingham Airport.

The assistance desk was great as I asked for a lanyard. I was then asked if I needed any help and if I did just to ask. Taking my stoma supplies through security was no problem at all. As I walked through the scanner, it went off due to my lanyard having metal so I was taken to a very cool X-ray machine which showed where my bag was! A female member off staff gave me a pat down which was gentle and her and her college were really polite so it made me completely at ease. I also noticed whilst at the assistance desk, a screen which let people know that they have other services available to help people with autism, their family and carers. Prior to boarding the plane, I stopped by Costa and had a chicken fajita, egg sandwich and a bag of my favourite crisps – Pom Bears!

During the flight my stoma bag made quite a lot of noise but I don’t think anyone noticed! I emptied my bag in the very small toilet and it was no problem at all, I even managed a nap!

I wanted to know other ostomates experiences when flying, good and bad. This is what they told me:

Julie: “I have a urostomy and had my very first flight last year. I took 10 bags, adhesive remover wipes , dry wipes, black disposable bags, I had a card signed by my nurse at the doctors saying I am carrying scissors all in my hand luggage. I kept spare sprays in my hold luggage. I had no problems through security and even though I was so scared of my bag leaking nothing happened all was a good experience for me.”

Linda:I have a colostomy and a urostomy, and have had no problems at all, carried what I might need in hand luggage and the rest of my supplies spread between our suitcases. I did worry a bit about coming back and connecting my ‘night bag ‘ to my urostomy for 12 hour flight back to the UK but didn’t do it as I cant really sleep on a plane so just got up to empty as I normally do. My stoma nurse did a letter for me to take.”

AJ: “I have never had any ballooning whilst flying and the only issue had with stoma supplies in hand luggage was when I never put spray in the plastic liquids bag. They just said to make sure I did in future. I didn’t take a doctor’s letter with me.”

Jennie: “I had to change my bag on a plane about 4 months after my surgery. I had started to leak and had to change! The toilet was tiny so it was a bit awkward! I’d pre cut my bags (about 3/4) for the plane so I didn’t need my scissors in hand luggage and they let me take my spray in a clear bag in my hand luggage. I topped up my travel insurance though to make sure I was covered as it had only been a short time since surgery but a doctors note never even crossed my mind. I went through security okay I was nervous but I was just honest with them I knew they’d feel it so I told them about it before I went through to save any embarrassment.”

Samantha: “I have had my bag 11 years and been on holiday probably every year since with no issues. I have never taken any travel documents but I did have an extra search before but as soon as i showed them the bag they were fine!”

Roxanne:I’ve flown a few times with my bag, it’s for a fistula so less issues with output etc than a stoma, always been fine, at Amsterdam airport, it obviously showed up on the body scanner thing, so when I told them what it was, they took me to a wee cubicle to show them in private and it was fine once they and seen it, not had that anywhere else with body scanners.”

Graham: “I always carried my supplies in hand luggage and spares in hold luggage, spread out with my parents cases just in case one case went missing. I had letter from gp explaining my supplies and had it copied into the language of the country I was going to which was spain. I never had problems at security, I just told them I was wearing a medical appliance and had a letter if they needed to see it.”

Rosie: “First time I flew with mine, I didn’t pre cut bags which could have been messy if I’d have had a leak, luckily I noticed before the return flight! The ballooning was a surprise I wish I had been warned about!!”

Sheila: “I have flown several times, and never had a ballooning problem as long as the filter is clear, and I carry a weeks supply of everything I use on a daily basis, in my hand luggage, plus the same again in hold suitcase, if your luggage goes missing, you still have 1 week of essentials at hand,, all pouches are pre -cut. It’s handy to get a medic passport from your supplier, signed by your care nurse as it’s in several languages and explains the holder wears a stoma pouch “

Lauren: “At Belfast International airport I got an extensive search and I was made to raise my top, which I obviously was nervous about as there was a queue of people waiting to come through the bleeper machine. They all just staring at me and my stoma bag and I didn’t want everyone seeing so I tried to say discreetly that the bulge under my top was in-fact a stoma bag. I was completely ignored and I felt so embarrassed that I had to continue letting the person search me repeatedly as well with the hand held machine. I wasn’t best pleased. I took my stoma supplies in my hand luggage and some in my handbag. I declared the adhesive remover but this was a massive problem in Gatwick Airport several times, even with a doctors letter explaining this and my medications.”

Lisa: “I’ve my stoma 4 years now and I’ve flown a good few times since I’ve had it. Even flew 6 months post op too, now that was more so nerve wrecking for me as I was on my own and didn’t know what to expect at first. But since then I’ve been on And off planes a lot with no issues at all. Most times when I go away I’ll change my bag the Night before so it’s nice and fresh, I’ll pack extra bags depending how long I’ll be away for. Lucky for me all my bags are pre cut so no need for scissors. I pack bags in my suitcase, along with my barrier rings,wipes, pads etc and more in my hand-luggage Incase my case goes missing. As for the sprays they go in the little clear liquid bag. I do carry a letter with me from my GP stating what’s wrong with me health wise and I’ve a little stoma passport I got from my stoma nurse a while back. I’ve been patted down a few times when I was going through security and some have asked what the bump under my top was and others haven’t noticed. They have asked to see it when I told them what it was and they’ve just swabbed it and I was off I went. When I’ve flown my bag has been fine, I make sure to empty it before I fly. I’ve only had one leak when I got off the plane but that was when I had my bag first.”

Kizzy: “I always split my ostomy supplies between my luggage, and I always pack at least double the amount of supplies needed, if not more (you can never guarantee that your not going to end up with an iffy tummy with all that foreign food). In my main suitcase I would put 1 box of ostomy bags, waste bags, my adhesive remover, barrier spray, a pack of conti wipes, a pack of wet wipes and my scissors. I would also put 20 pre-cut ostomy bags, waste bags and conti wipes in my hand luggage. I remember only one instance where I was stopped, and that was on my way back from Ireland and it never went further than a pat down. In 2015, I was taking a fair few more medications than I ever had previously so before I booked a holiday to Turkey, I looked into whether the airline I’d be going with allowed extra hand luggage for medical items. There was and I required and got a letter from my gp (this varies in price depending on your gp… I think the first time I got one it cost me £5, then when I needed one a couple of years later, it cost £20) They would allow up to 5kg of medical items in separate hand luggage bag. I had no issues on the flight out, on the way back a member of the airline staff approached me and told me I could only have 1 piece of hand luggage. All i had to do was show her the letter from my Gp and I had no further issues.

Hanna: “I make sure I change in the loo before flying so I’m fresh. Also don’t take my scissors in my hand luggage, I pre cut. As long as your potions are in a clear bag, they’re fine. I didn’t take all my supplies in hand luggage the first time, I had some in my suitcase and some in my hand luggage. In February, I only had hand luggage so everything was in there. No problems. I didn’t have a letter or anything, the only problem if you can call it that, was my oramorph had to be tested. The airline Ryanair advised me to ring them before I fly next time because I can get an extra baggage allowance because it’s a medical need.”

Abigail ” Flying with a stoma is OKAY! It’s EASY! Too many people panic, believing the horror stories of that the bag is going to inflate and explode! I’ve been flying full time as long haul cabin crew for British Airways for 2 years with Polly! My top tips are; Put your scissors in liquids bag Sprays in liquids bag Half your trip supplies in hand luggage and half in hold luggage If needing to change mid flight use the baby change toilet (there is always one on every airline if you can’t find it ask the crew) and lay everything you need out in front of you, we all know toilets on aircraft aren’t the biggest but this gives you so much more organisation and space Your bag doesn’t inflate with “pressure” Stay well hydrated Hidden disability lanyards are great if you’re nervous about security My main tip is if you EVER need any help on board ASK YOUR CREW! We have been trained so intensely including medical, we can support you be there for you and we can do whatever it takes so we look after you, never be embarrassed to ask for help as it’s our job to look after you!”

There are mixed experiences and my best advice is always carry some documentation such as a travel certificate from a stoma supplier or a letter from your GP, it’s better to be safe than sorry! If you are an ostomate and anxious about flying due to having a stoma, I hope this information helps you as much as it has helped me.

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