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Travelling with an ileostomy

Posted by tinmlizzy, on Fri May 01, 2020 3:16 pm

Hello, I’ve had my ileostomy for five months now.  I have to travel to Europe in the not too distant future and quite honesty scared of the entire journey.  Can anyone give some advise I.e. flying, bathroom, eating, drinking and staying sane? Any help would be appreciated. 

Reply by Daanders, on Fri May 01, 2020 3:24 pm

I flew to California from Winnipeg Manitoba Canada.  They frisked me.  I won't go on a long flight because I won't dump on a plane.

Reply by tinmlizzy, on Fri May 01, 2020 3:29 pm
Daanders wrote:

I flew to California from Winnipeg Manitoba Canada.  They frisked me.  I won't go on a long flight because I won't dump on a plane.

Thank you danders for your reply. Do you have a travel card, apparently it is supposed to help eliminate you being frisked

Reply by Little Lulu, on Fri May 01, 2020 6:04 pm
tinmlizzy wrote:
Daanders wrote:

I flew to California from Winnipeg Manitoba Canada.  They frisked me.  I won't go on a long flight because I won't dump on a plane.

Thank you danders for your reply. Do you have a travel card, apparently it is supposed to help eliminate you being frisked


Tinmlizzy, I have a travel card, but I have never had to use it. I have never been frisked at the airport. I always get my card out so that I can present it if I need to. The bigger problem for me is emptying my bag on the plane. The toilets are so small that it makes me a nervous wreck. Having said that, I have emptied successfully on a long flight to Europe. It is just very stressful for me and I get anxious about staying in the restroom too long when other people might be waiting. My husband tells me to quit worrying about other people and just do what I need to do. I need to conquer my anxieties and just get on with it. As soon as the lockdown is over, I'm going to do just that. Try to practice at home, giving yourself less space than normal. That helps. Good luck, and let us know how it goes!

Lucy

 

Reply by newyorktorque, on Fri May 01, 2020 6:34 pm

You dont need a card.  You can simply tell them you have an ostomy.  Make sure you take a carry on with ostomy supplies and a change in clothes just in case.  Dont forget toiletries must be 3 oz or less packed in a clear zip lock bag.  Be prepared with mask and gloves.

JMC
Reply by JMC, on Fri May 01, 2020 7:38 pm

Definitely don't need a card, have travelled overseas several times with an ileostomy and have only been patted down a couple of times, it's all very discrete, you don't have to flash your bag or anything.

Aisle seat is good for easy access to the bathroom, never had any issues with unloading even in those tiny cubicles, I use those little cups of water to rinse the tail end of the bag out.  Been on plenty of long haul flights (20 to 30+ hours) and usually only empty every 4-5 hours (like at home).  Drink plenty of water and eat at regular intervals, if I don't eat before or during a flight I just end up with a heap of gas/froth which is more of a nuisance than emptying as per usual.

I pack all my supplies in my on-board bags, and double-up of what I think I may need, they take up suprisingly little space (but I'm a light packer anyway).

First time flying overseas can be a bit daunting, but try and think positive and get excited about your holiday/time away, confidence is key in enjoying the whole experience.  

"Not too distant future", does that mean this year?  Honestly thought non-essential international travel would not go ahead any time soon but good luck with it all (and sanitize yourself and your belongings to the nth degree!)

 

 

Reply by kmedup, on Fri May 01, 2020 7:50 pm
Daanders wrote:

I flew to California from Winnipeg Manitoba Canada.  They frisked me.  I won't go on a long flight because I won't dump on a plane.

Hi ladies,

I have an ostomy and can irrigate. I have irrigated on planes, trains, MacDonald’s, on the Jersey Turnpike, on the ferry to Martha’s Vineyard, in airports, even in a country outhouse, where ever I can lock a door and hang my small laminated sign on. “Ostomy client - might be some time in here, thanks.” And, yes, I carry a bit of Gorilla tape with me as well. I have never had a single problem – a few near misses but that keeps me mindful of no beer or wine on the flights anymore. Before this virus I would travel overseas at least 3 times minimum per year - mostly for work. (Nov. Poland, Dec. Iceland, Jan. 2020 Costa Rica for a month – working remotely)

Before the ostomy, for a few years, I had an ileostomy and I flew as well too. In order to visit my kids I have to fly or it will be the next season until I got there. I abstained from eating or drinking at least 8 hours before my flight. What goes in usually came out in a timely manner.

I also did the following:

1. I tell security I have a different plumbing system than they have; an ostomy., “Want to see?” Their smile avoids any frisking and if they do, I say, "Maybe I should have emptied it first - careful."

2. I tell the ticket agent I need an aisle seat in case I have to "run," saying this is more for the safety and comfort of the person sitting beside me. Works every time and DOES make sense.

3. I ask the flight attendant to come and get me in the middle of the night when it is the best time for me to use one washroom for about an hour. They like my consideration so they put an "out of order sign up temporarily and sometimes they use my sign – with a chuckle. Most overseas flights from Edmonton or Calgary are early evening so it is night when over the ocean.

4. What I do know for sure is that all the airpeople that I have come in contact with over the last two decades, I have NEVER seen before again, so why worry.

I pay for a seat like anyone else on the flight – some people snore, others cough continually, some fart and pretend it is not them, some have BO, and some dear mothers have babies or kids that fight sleep for the whole 8 hours. I think I fit right in.

My ostomy is also a perk. For example, one time I had a layover in Amsterdam and really wanted to spend an extra night there. I managed to have a slight blowout and when I informed the agent, she immediately switched me to a similar flight the next day. Eureka!

You take the good, you take the bad, and continue living and flying.
K

 

Reply by britathrt60, on Fri May 01, 2020 11:55 pm

I don't have a card and have never been frisked..I always tell them about my ostomy and never had a problem. .make sure you take plenty of supplies with you tho just in case ..I found out the hard way last time I went to England ..ended up with lots of leaks and just made it home in time to get some more...take care 

Ange 

Reply by Bill, on Sat May 02, 2020 3:57 am

Hello tinmlizzy.

You'll be fine as long as you take a bit of confidence and plenty of spare supplies.  I have travelled on long-haul flights on many occasions and have only been stopped on one occasion by airport authorities. That was because I was wearing a home-made  hernia belt which I ommitted to take off when going through the Xray machine. I explained that I had a stoma and offered to show them. They escorted me to a separate room and invited about 6 other staff members to have a look.  I was happy to discuss the stoma and its problems with them and answer all their questions. It was a bit like heading up a seminar for students.  I feel that it is important to educate as many people as possible into the management issues of stomas, and we all had a laugh about my 'stories' concerning 'mishaps'. If I knew that I was going to have one of these seminars - I would probably have taken a few of my rhymes along to make it even more enteratining.   If you want to read further about what ostomates think about travelling you wouldn't do any better than browsing through  'Collections' - - 'Premium content' - -'travelling and ostomy'.

Best wishes

Bill

Ps: I was going to post a couple of rhymes about 'border control' but changed my mind as they might not be suitable to share with the border control staff. ( fro anyone interested those rhymes and many others can be found on my profile in 2015). However, the amount of ostomy gear that we have to carry with us can make for an amusing conversation, so I'll share that one:

AND, as I have reread this rhyme, it's reminded me that the border-control will still confiscate your scissors, even if you have a good reason to posess them!

 

MY OSTOMY GEAR.


Since I had an ostomy
so many things have come to me.
Sometimes I think I’ll disappear
under all this osto-gear.

In days gone by I wondered why
old men wore their trousers high.
I could not imagine how it felt
wearing braces with no belt.

But now I have an ostomy
I understand this strategy.
The belt-line must be elevated
so stomas don’t get perforated.

This storyline does not end here
I wish to tell of all my gear.
All those things I use and wear
here are some that I will share.

Even I can be bemused
at the old belts that I have used.
Their height is just below my boobs
to seal the tops of drainage tubes.

Some other gear I can disclose:
elastic belts and pantyhose.
If hernias threaten I suppose
these must be worn beneath my clothes.

I don a cricket box of course
preventing scratching from pets claws.
Wet wipes, dry wipes, hair dryer,
none of these I had prior.

Big bags small bags, open and closed,
stick-ons, clip-ons and those to dispose.
Lotions, potions, barrier sprays,
enough to last for quite a few days.

Scissors straight and some with curve
so small round shapes we can preserve.
Adhesive removers, sprays and wipes,
everything comes in several types.

When I mess or make a smell
my ostomy won’t go down well.
With all this stuff around the house
I feel for my long-suffering spouse.

Rectal catheters, inco-pads,
all the very latest fads.
Odour neutralizers do their best,
household deodorizers fail the test.

And to house this equipment boom
I had to build a new bathroom.
A bit of planning often pays
for now we groom in separate bays.

Were I to venture from my door
I’d need these things and so much more.
Travel can be sometimes hard
that’s why I have a travel card.

Although this list may seem quite long
most of my stuff will quell the pong.
And getting rid of personal waste
will not be to most folk’s taste.

Forgive me if my mind will scoff
if just the thought can put you off.
Think of those less fortunate us
who daily cope without much fuss.

Count your blessings one by one
for ostomies are not much fun.
And I would give you all my gear
for your working guts my dear.


                           Bill Withers 2011

 

 

Reply by panther, on Sat May 02, 2020 9:47 am

Take more ostomy bags than you think you will need, find out in advance where you can get more ostomy bags while there in case needed takes the stress out so you know if they were needed getting hold of them won't be a problem....Finally breath relax and just enjoy your trip for work or pleasure 

Reply by PETey.13, on Wed May 13, 2020 11:34 am

I always get frisked, even though I have a card and frequent traveller TSA endorsement. One TSA agent takes my passport, so I snatch it back and curse him. I am threatened with a strip search. So, I take 2 or 3 TSA agents to "the room" and yell at them for 10 to 15 minutes. I dare them to verify that my bag contains less than 3 ounces of poop. Next time, I might just get naked...Yes, do carry plenty of extra supplies on your person (I always wear cargo pants), in carry-on luggage and in stowed luggage...I eat and drink as usual. Using the aircraft's restroom: I just stand and let it drop. I no longer worry about airpockets. I have had 2 misses. I clean my shoes and pants as best possible, and inform the attendant. It's easy to fly with an ostomy when you don't care anymore. 

Reply by bigal1579, on Wed May 13, 2020 3:27 pm

There is really nothing to it - no need for a card.  Nowadays it seems TSA agents are undaunted.  They might stop you because they notice something on the xray.  Just tell them you have an ostomy or a medical appliance.

They might ask you to rub your hand on it and then swab your hand and test it.  That takes less than a minute.  Generally they don't want to touch it or even look at it.  It's very easy.

 

Some things to make the journey seamless:

-Put on a new bag on the day of the flight; that helps to keep the filter clear so air doesn't build up.

-Put odor drops in the bag each time after emptying

-Don't be afraid of emptying on the plane; use a seat cover and sit down making sure your clothes don't rub on the toilet.  I used to be totally against sitting on a plane toilet, but it's no big deal.

-Stay ahead of it; empty more often.  Don't let it get more than 1/3 full.  Nobody is going to care if you have used the bathroom 3 or 4 times rather than once.

-Don't limit water consumption to try to minimize bathoom visits.

-Definitely get an aisle seat

-Empty right before you get on

-If you do get air build up in the pouch, quickly visit the bathroom to vent it out and leave more room for air and output

-Stand up and/or massage the pouch while sitting to get the output to the bottom of the pouch so it doesn't foul the filter

-Don't worry about taking extra long in the bathroom - it won't really be as long as it seems to you

 

Reply by bryancohnracing, on Fri May 15, 2020 5:35 pm

Sorry I am late to reply, been a busy time lately.

I travled to London, Brooklands, Paris and NYC on a 14 day journey back in spring 2017, just 7 months after my surgery and only 30 days after being released from my docs for treatment of MRSA via IV antibiotics. 

I was weak as hell but this trip had been long planned and I wasn't misisng it! :)

The main detail I've learned about travel is to take WAY more supplies alomng than you think you'll need. Early on in my travels I took what I thought were enough but on two occassions had to find local suppliers to restock as I had many problems the first two years after my surgery. 

When I travel I eat low volume foods to start with, followed by foods that don't cause gas or bloating and finally I cut back on sweets. I've learned to adapt, its not the most exciting diet but its far better than the problems from eating things I really like and paying the price later on. 

As for air travel, train travel, etc I would put on a new barreir and bag daily. This helps avoid leaks and blowouts, at least for me. 

If I am very active, and I am as a racec car mechanic and racing driver/driver coach I go no more than 3 days on a bag and barrier when outdoors, sweaty, etc. 

Hope this helps, enjoy your travels and if you ever end up in the KC area look me up, first beer is on me! 

Bryan

Reply by GK 1971, on Thu Jun 18, 2020 2:33 pm

Hi

 

I travelled exactly after 45 days of my surgery..total proctocolectomy with ileostomy..last year... yes I was apprehensive first...but I managed very efficiently.  And yes..I was alone. I flew from India to Australia with layover of 6 hours at Singapore. 

I carried less luggage with me. I had 2 small bags with me, one backpack and one handbag..both not exceeding 7-8 kgms. And I had kept one emergency bag (pre-cut) with me incase of some emergency though it didn't arise.

Believe me, you would be so comfortable and relaxed, nothing to worry about. It is just in our mind...so just believe in yourself. 

 

You can talk to me incase you need some more info. :) 

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