Travelling With A Stoma

by Michelle Williams

Travel With A Stoma

Travelling with a stoma can be daunting at first

The thought of travelling with a stoma - even just a car journey - can be daunting, especially in the beginning.

Flying with a stoma bag – busting the myths!

The first time that I was due to fly, I was convinced that my bag would expand like crisp packets do on a plane. Luckily, I'd recently found out about a helpline; a quick call to them assured me that my fear, of my bag flying off and whizzing around the aircraft like a balloon, would not be a reality.

I've never been scared about flying in general, but my nervousness about the bag manifested itself as a fear of flying. As soon as the plane doors shut I wanted off, but soon after take off I settled down, with the help of an air stewardess and a glass of water. Yes, I went to the toilet at least 40 times to check if the bag had sprung a leak... but it was fine.

The trick to travelling with a stoma bag is to be prepared

The trick to travelling with a stoma bag is to be prepared...but don't worry I'm not talking “Bear Grylls prepared”!

The good news is that you don't need a lot of stuff and you certainly won't look like you're travelling with a newborn. Here is the list of stoma travel supplies that I’ve found works for me:

Day to Day travel supplies with a stoma (including for going to work)

I have what I call a bag of tricks, in a small make-up type bag.

  • 2 x stoma bags (of two different sizes.)
  • 4 x Medical Adhesive Remover Wipes
  • 2 x Skin Barrier Protector Wipes
  • 4 x Dry Wipes
  • 1 x No Water Cleanser (Travel size)
  • 1x Washer
  • 4 x Nappy Bags
  • 1 x spare pants / knickers
  •  

    Even as a newbie you quickly become aware of a bag leak, so 99% of the time it’s not a full on clean-up mission, like the type that you get with bag breaches at night.

    If you get caught in a long traffic jam and your bag is bulging (if you are driving, you should be at a complete standstill, with no chance of moving on imminent) you can discreetly empty your stoma bag into one of the nappy bags. Carrying a pack of baby wipes in the car is also handy.

    Stoma supplies for travelling by air

    Much the same bag of tricks as above but, in addition, I carry a change of clothes in my hand luggage. Depending on the length of flight, I may also add in additional bags and dry wipes.

    All Stoma products are considered medical essentials, so you are allowed to take them as an additional clear plastic bag of liquids through security. Most airlines also offer extra luggage weight allowance of around 5kg, for free; you just have to call 'Special Assistance' at least 48hrs in advance.

    A handy tip, which I first gleaned from an online stoma forum, is to split your stoma supplies between your hand luggage & hold luggage. That way, if one goes missing you're not stuck without stoma bags.

    Most stoma supply delivery companies have a worldwide agent who, if you get stranded abroad, can either get supplies to you directly or at the very least put you in touch with someone locally that can: you won't have to start duct taping a sandwich bag to your belly!

    Another item I highly recommend packing is Rehydration Therapy Sachets: regardless of weather the country you are visiting is hot or cold, we ostomates tend to get dehydrated easier than most. Something as simple as a few hours time difference can result in a watery output the first couple of days which really exacerbates this problem.

    Travel Insurance for ostomates

    Last but by no means least...Travel Insurance. Please be aware that a lot of 'brand' name insurers will only insure you for an extortionate amount of money and any existing conditions will not be covered. Instead, if you search for insurance companies that specifically cover cancer patients, they will not only cover existing conditions but also for a lot less money.

    When I first travelled abroad with my stoma, I paid £400 for cover to the US for a week and and my existing stoma condition wasn't covered. Last year I got an annual worldwide, including US & Australia, policy for £70, with all existing conditions covered!

    I hope you have found some of my hints and tips useful. Happy travelling!

    Jane has further advice on travelling with a Stoma here

    Michelle Williams

    About the author

    My name is Michelle; I live in Kent with my husband and son. I have a permanent ileostomy as a result of Ulcerative Colitis. You can follow me on twitter.

    Recent Comments

    • zena illahibaccus

      Hi Michelle, I have just read your blog and found it very funny. I am recently a new ileostomist of 20 months and I am 46 on Valentine's day. My story was that I had no warning of my bowel going mental until I was admitted to A&E and only then they thought it was appendicitis. My bowel actually perforated while waiting to get a bed, and then when I woke up, I had 22 clips and a bag. I was in HDU for about a week and I was told that it would be permanent due to the fact I had no signs or symptoms that would indicate anything was wrong. It just felt as if I was going to have a monthly cycle. How do you cope with your energy levels during the day, and do you use any kind of aid to get about? I have to use a stick whenever I go on long trips as I get very tired and as for the tube/bus, I cannot stand for long as I get dizzy. what are your suggestions for this, and I actually had to give up my keep fit because of this tiredness.

    • Miss Michelle Bean

      I find that a night bag comes in very useful when travelling by car! Especially long distances x

    • Shirley

      Hiya. That's a brilliant insight into stoma care I have recently been fitted with a urostomy bag for my gallbladder. I have been worried about travelling especially flying and you have put my mind at rest. I too have cancer and haven't flown since diagnosis due to cost of insurance. Would you be so kind as to supply me with your insurance company. Thank you in advance.x

    • Shirley

      Hiya. That's a brilliant insight into stoma care I have recently been fitted with a urostomy bag for my gallbladder. I have been worried about travelling especially flying and you have put my mind at rest. I too have cancer and haven't flown since diagnosis due to cost of insurance. Would you be so kind as to supply me with your insurance company. Thank you in advance.x

    • malcolm haggett

      i am scared to death of flying had my op in march and have a corlostomy for life due to bowel cancer due to fly 28 of this month found your message helpful thanks malcolm

    • Michelle Williams

      Shirley - I'm pleased that you found my blog helpful. I use 'All Clear Travel' they specialise in Travel Insurance for people with pre existing medical conditions, including Cancer.

    • Michelle Williams

      Sorry for the delay in seeing your comments, there was an issue that meant we've only just got to see them. Zena - I have additional medical conditions that make my energy levels very poor. I was told it can take up to 2 years for your body to recover from serious surgery and to do that your body needs lots of rest. I'd also recommend checking your hydration levels, when you are dehydrated you will not only feel tired but your muscles etc will also feel weak. An easy at home test is to drink a rehydration drink and see how you feel within an hour, if there is a marked difference then up your fluid in take and see how you go. I'd also recommend speaking to your GP so that they can run some tests to see if you are deficient in anything, due to your remaining bowel not being as absorbent. Please feel free to follow me on twitter if you have any further questions.

    • Simon Kerr

      Hi Michelle, Very helpful thank you. My father has a Urostomy, he hasn't flown since his operation some 9 years ago, he is flying out to see me in the US this year which I am so pleased about. I am interested in knowing who you use for the travel insurance as quotes my father has had are obscene ��_2000 per week for US, so hence he is looking for something more reasonable! Many thanks.

    • Jean smith

      Hi, I'm only 9 weeks post op and have ileostomy due to Croynes . We are off in sept for holiday abroad and these comments are all very helpful and informative and take some of the worry out of flying. Thank you. The other thing a couple of people have said is that their energy levels are down. Does this happen to most people? My energy seems to be more as I just feel the toxins have gone and I feel more healthy already. I still get a bit tired but in general I feel so much better.

    • Michelle Williams

      Hi Jean Welcome to the Stoma Brigade. I bet you can't wait for that holiday now! Like you I definitely have more energy that I did before my op. We don't absorb as well as we do with a colon so sometimes the fatigue, especially in the summer, can be down to dehydration I find. Whenever I feel like that I always try a rehydration sachet first and 9 times out of 10 it works. Take Care Sonikmummy x

    • Phyllis

      I loved your blog. I had bowel cancer 16 years ago I then developed a hernia,on the site of the op. Four years ago the hernia burst and I was rushed to A&E after ICU and a stay in hospital I came home with an open wound and a VAC machine that helped with the healing. Yes it was hard, I have no stomach muscles now and look 10 months pregnant!! People stare at me and I feel really embarrassed but I am alive. I have travelled to Italy, America, Majorca, Menorca, Turkey, Greece and been on a cruise since I had my colostomy. Airlines have been useful, they have made sure I have a seat near the toilets but honestly I have been fine. I do tend not to eat too much the day before travelling and leave fizzy and alcoholic drink alone -just in case. Life is so still worth living and the World, although it has it's troubles is such a beautiful place we all deserve to see it.

    • Janet

      I had my loop ileostomy on the 1st Sept, how soon do you think to go on holiday. We hav a cruise booked for 7th Oct will I be OK to still go on this or would you say it is to soon after surgery? Already cancelled this once in march when I had jpouch connected.

    • Jillian

      Thank you, So nice to have so much information, from Beautiful people, Godbless, you all, Life is a Journey, I never thought for a minute that this would happen to me, it did, I am Happy to be alive, after 8 hrs of surgery, and waking up with what looked like a Zipper from top to bottom, my Drs and Nurses, were Angels, My Husband helps me change my Stoma, and is happy to Support me in every way, so now their is the three of us, he named my stoma Chuckie,

    • Martha in South Texas

      What delightful, positive and helpful people! My bladder removal surgery was a year ago this past July. Strange to say, it was one of the best experiences in my life..meeting so many loving and helpful people (and still am including you). Michelle, you will appreciate this from my little great granddaughter: " I still have one antenna and most of my legs." This saying came about when she and her small sister were playing at my daughter's and were outside collecting "Roly Polys" AKA "pill bugs" in S. Texas.

    • Abena

      Thanks a lot for this. I've had a colostomy for a year after surgical complications. I'm travelling to the UK from Ghana next week and oh how timely it is for me to have come across your blog. I'll gladly use the tips given. Cheers._

    • Linda

      Hello Michelle That was an interesting read thank you. My husband has recently had a urostomy bag due to bladder cancer. We are travelling abroad for just a week after a stressful 2 years. Hopefully he will manage with his stoma, however, he is worried about going through customs and being searched, any advice would be grateful. _

    • Lauren

      Hello Michelle, Thank you for you tips. I am pending an illeostomy on June 7, 2017, because of Gardner Syndrome, and I am determining whether I should go home for recovery period. I was wondering if any of you would be willing to share your thoughts on how long after illeostomy surgery can you travel, plane or car. My family is ~2000 miles away but I'm in best place for surgery. I was thinking of my sis coming up to get me and driving me home, then flying back after a few weeks. Your advice is appreciated. I am 26.

    • sonya adhepeau

      I'm having a colostomy done on 4/2/2018 and I have mixed feelings.but it needs to be done.thanks for your blog.

    • Maggiex

      Great to find this! I too have an ileostomy as a consequence of having full hysterectomy. I woke up in HDU 9 hours after my op and wasn't aware of the 'bag' until the night nurse was emptying it. When I asked what had happened was told the doc wld see me in the morning! So still adjusting mentally and physically 2 months on and still off work. Waiting on docs to decide if ok to do radiotherapy before or after ileo reversal which may well be months. Friends want to book holiday to Canaries for July but unsure if I shld go this summer or wait until both procedures done - just wondering if anyone experienced similar

    • Pam

      Found this site whilst looking for advice where I live (Tenerife). I have a permanent ileostomy (Sept 2016). Lost my entire colon because of a blood clot. I have been terrified to fly again as this happened only 2 weeks after my return from the UK. The health care here is brilliant, they saved my life, but aftercare and advice is sketchy, and the products available are not the latest technology. I have now convinced myself to fly and am going to UK in May, whether it kills me or not. If I don't see my family soon I cannot see this depression lifting.
      Your blog gave me confidence , and the tips are very useful.

    • Karen Clinton

      Hi fellow ostomate travellers
      I have a permanent colostomy due to aggressive bowel cancer. I have had my colostomy for just over 2 years.
      I was 47 when diagnosed and it came as a complete surprise ( but not like a present surprise!!)
      It has changed my life but I am not bitter and resentful, rather it has made me appreciate what I have ( and in my opinion makes me even more special than I was before!!! I am a Leo!!)
      I intend on traveling to Kenya in January with my 14 year old daughter. I have traveled a short distance by plane to Uluru from the east coast of Australia but this will be much bigger and the logistics will be increased as I will be away for 3 weeks in an African country.
      I have had a few explosions where it has really hit the fan but it doesn’t stop me. I have returned to work as a specialist teacher after 2 years of treatment and am finding it not that difficult. I do tell everyone so it’s no big secret. I am proud to be a survivor and have the French word for fierce tattooed on my arm.
      I think that nothing can stop us, not even cancer.
      So thankyou for letting me share and let’s all go and see the world with a little excess baggage attached to us!!!!!
      Karen

    • Sharon

      Really grateful for the travel tips as flying to Lanzarote this week.
      I had an emergency Ileostomy in January afyer a perforation to my bowel after apparantly swallowing a chicken bone although I have no idea how this happened!
      Like a lot of you it came as a complete shock but after 6 months of living with Bertie as I like to call it I have made the decision to keep Bertie even though I can have a reversal.
      After suffering with Crohns for 39 years it has improved my life enormously enabling me to lead a normal painfree life once more.

    • Susan

      Ref Pam, I had a colostrum bag due to cancer, I live in Tenerife, there is a wonderfully support group here,all ran on donations and volunteers, look them up on the net FACT fighting against cancer Tenerife, they are always there for a chat , you are not alone

    • Hanmant Bhat

      I have the permanent colostomy. I got APR operated in March 2017. I do irrigation every day. I want to take a 17-hour flight, the irrigation time will come during the flight time. How do I travel and what preparations I need?

    • jean Nentwig

      My Dad (89) has had a stoma for about 18 months now and my mother (90) changes it for him twice a day. (They didn't want the ones that you empty). Occasionally, it will burst at night and it is because of this reason that my mother will not even consider the idea of us all going away for even a night, to stay at a hotel/ motel as she is worried the bag will burst over the hotel's bed/ sheets/ blankets. He doesn't even want to go into respite (which I don't really blame him) so my mum can have some time away. She is very tired and just needs a change of scenery somewhere nice where she can relax. Of course, he needs it too. So, my question is....how do people cope with staying in regular motels when they have a stoma, and are they worried the bag will burst while in the motel bed? I can understand their concerns, but I really would like to take them away for a night or two. We live in Australia, by the way,

    • David

      HiMichelle,
      Great blog with some great advice. I wanted to ask you and your readers about another aspect of air travel: security screening. I've had a stoma for nearly 4 yrs, travel a lot with work, and, since the introduction of those 360 degree full body scanners, my stoma always shows up. Security responses vary wildly - the most sensitive screening I've had was in the US - they either swab you (swab behind the belt line), or ask you to put you hand inside your belt and then swab the hand. At Leeds Bradford Airport recently I had a humiliating experience. I was told to go in a room, drop my pants and show that I had a stoma. Has this ever happened to you (or anyone reading this)? I'm about to take it to my MP and make a fuss over this as forcing people to display their disability is, it seems to me, to be discriminatory.

      Thanks so much for your advice - it really helps people!

    • Margaret

      I am travellng on the skitrain to France in Jan. I am just wondering if then going up the mountain to 2000 feet and wondered how this would affect my new ileostamy. After 8 weeks I am doing well but do run out of steam and feel tired. I do find the diet difficult because I am a fan of green veg. and salad and miss having them as a daily part of my diet.
      Thank you for your encouraging comments.

    • Geoff Boyde

      I have a stoma following bowel cancer a year ago and am now considering a holiday . I found your comments helpful and would like to know the name of your insurance company.
      Thank you .
      Best wishes
      Geoff Boyde

    • Michelle

      Hi Phyllis, It's so wonderful to hear how positive you are , after going through so much.

      I have an Uncle who went through similar circumstances with his stoma hernia, had the HVAC that got infected and then a second emergency procedure made the hernia site worse....yes the hernia never got fixed!! He's been left with a 'Scar' wall covering his (like you say) 10 months pregnant bulge.

      The reason I mention all this is because after 3 years he finally has a surgeon who is willing to fix his wall and hernia. So keep on being positive, keep on travelling and keeping on not worrying what people think!

      Lots of Love x

    • Michelle

      Janet, So sorry that I've only just seen your comment about your loop and your Cruise. I hope you managed to go. I think as long as you feel well enough in yourself and your doctor clears you to travel then there is no reason not to.
      Best to keep away from anything that will overexert yourself, like climbing Everest or Base Jumping off the Eiffel Tower and stick to reading novel on a sun lounger. M x

    • Michelle

      Hi Linda

      Sorry that I'm only just responding to your lovely post now. I hope that your husband found no problems going through security. Stoma's are so much more in the public eye these days, thanks to media particularly social media. This in turn means the general public are more aware of what a stoma is.
      As a general rule I tell airport security people I have Colostomy bag, just because that seems to be the only stoma they have heard of. I only mention it if I'm taken to the side for a pat down or full body scan.
      I have only ever been treated with discretion, respect and kindness at any airport. Mx

    • Michelle

      Hi Lauren
      Apologies for the delay in getting back to you, it'd be interesting to hear how you got on with your recovery and travel?
      I hope to write a blog on the very subject soon. Mx

    • Michelle

      Hi Maggie

      Hope you are doing well? and that you've had your radiotherapy, reversal and holiday to the Canaries. Look forward to an update. Mx

    • Michelle

      Hi Pam

      It sounds like you have been through a really rough time and I can understand your hesitance in flying again, however you are also right in saying that for your own mental health you need to overcome these obstacles just as much as the physical ones.

      There are some great advice and supports resources on this website, so make full use of those and don't be afraid to reach out to people on social media too.

      M x

    • Michelle

      Hanmant Bhat

      I'm afraid I don't have experience with Irrigation, this might be a question better asked in a forum - if your stoma nurse or supply company are not able to guide you. M x

    • Michelle

      Dear Jean Nentwig

      When staying in hotels I use two options, one I take my own towels. One to lay on and one over the top of me.
      The other option is Incontinence pads (squares) in the same manner. I hope this helps your mother get some much needed respite. Mx

    • Michelle

      Hi David
      My sincere apologies in the delay in replying to you. Now you mention, I did encounter something similar and only at Leeds Bradford Airport.

      I was travelling with my son and I was taken into a room, asked to open my jeans, lower my super pants enough to reveal my stoma bag. My son who was 8 at the time was really worried because they were so officious and menacing about it.

      I'd be interested to hear what your MP has said. Mx

    • Pati

      What a wonderful blog...U have been very helpful...I was afraid of flying because of my Colostomy....with what I have read above I feel much more confident...and most of my fears have "gone away"...keep blogging...

    • anne daly

      Just found these comments today . Very helpful. I got an ileostomy on March 15 because of diverticulitis. I’ll have it for 6 months . It was an unexpected big operation. I’m booked on a cruise on June 22 and I’m apprehensive. We fly to Rome from Dublin to join the ship . I have a card for the airport and I plan to pay extra to avoid any delays. I’m hoping that I fly comfortably. We have seats at the front of the plain beside the toilet . Fingers crossed

    • val crust

      Hi I'm off to America in March to see my brother that I've not seen in a few years I'm worried about flying with my stoma due to security I'm not a great flyer anyway last time I flew was to Italy 4 years ago and had drug swab done around area I'm worried about having that done again I've had stoma for 24 years and avoided going on holiday due to the embarrassment of it.

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