# Dealing with Crohn's on long haul flight



## luckystar2001 (Aug 28, 2011)

Hi all,

I am new here and have a question.

I travel frequently on long haul planes over to the states and on my last couple of trips I have had severe pain etc from my Crohn's and I tend to panic because of having to use the toilet on the plane and causing a queue.

Can anyone reccomend any techniques to prepare for travelling long distances? I am due to travel again in just over 3 weeks and im starting to worry Im going to have problems again 

Thanks


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## 25times (Aug 29, 2011)

For short term use, I would recommend immodium, if you're having diarrhea. For the pain, have your doctor prescribe a painkiller.. That would be the most obvious thing to do, in my opinion. Maybe you don't like painkillers or something, but for me, if I'm in pain, I take painkillers.
If you're looking for "natural" fixes, I'm not sure.
Hope you find something that helps.


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## luckystar2001 (Aug 29, 2011)

Wow....ok thanks....I would just say be careful with the way you construct your responses - I appreciate what your saying but the tone was slightly patronising to say the least... 

Of course pain killers would help with the pain but I specifically asked what techniques to prepare.


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## Artificial (Aug 29, 2011)

Hi Luckystar,

I don't travel long distance very much so am unsure what to suggest but it would be best to make yourself as comfortable as possible on the flight and try not to think about the fact you may need to use the toilet as this will probably make it even worse - hard to do I know!

I went to New York in Feb, in the middle of a flare, before I was diagnosed, so I know long flights can be tough!

Sorry I can't be more help 

Rachel x


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## luckystar2001 (Aug 29, 2011)

Hi Rachel,

Thanks very much - I agree I do tend to think about having to use the toilet so much which may contribute alot to the reason why I have problems on the plane.
I pay extra to fly 1st class to have a bed which does help so I can lie down if I'm unwell so I can't do much more to make myself comfortable lol 

Thanks again for your response greatly appreciated 

Richard.


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## Misty-Eyed (Aug 29, 2011)

I feel your pain! Quite literally! Is it your usual Crohn's pain that you get though? Mine used to be caused by the air expanding inside me making me really bloated and causing excruiating pain. I remember flying direct to San Fran and almost being in tears for the last couple of hours of the flight. I've puked up on myself a few times too from the pain and air wanting to get on. NOT NICE.

I'm not sure if your pains are from the same reason, but I started talking windeze to help. I took one after the meal before the flight, then when I ate on the plane and when ever else I could which seemed to improve things a lot!


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## InkyStinky (Aug 29, 2011)

Hi Richard - so sorry to hear about the pain you're in. And the anxiety about getting to the bathroom doesn't help anything, either. I haven't been in the position where I had to fly during a flare, so I can't add any good advice for you. 

I'm sorry if this just gives you another thing to worry about, but have you heard of the link between IBD and blood clots? A year and a half ago I was diagnosed with clots (dvt and bilateral pe) "out of the blue" - the docs still don't know what caused them, but I was in a Crohn's flare at the time and I later found out that there is a link between flaring and clots. I wear compression stockings now, and maybe your doc would recommend/prescribe some for you to wear on the flight?


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## luckystar2001 (Aug 29, 2011)

Misty-Eyed said:


> I feel your pain! Quite literally! Is it your usual Crohn's pain that you get though? Mine used to be caused by the air expanding inside me making me really bloated and causing excruiating pain. I remember flying direct to San Fran and almost being in tears for the last couple of hours of the flight. I've puked up on myself a few times too from the pain and air wanting to get on. NOT NICE.
> 
> I'm not sure if your pains are from the same reason, but I started talking windeze to help. I took one after the meal before the flight, then when I ate on the plane and when ever else I could which seemed to improve things a lot!


When i have pain/diarrhea on the plane its like my normal symptoms X10, I have excruciating pain and sometimes feel like im going to pass out from the pain (yes its that bad) - I spoke to my IBD nurse and she said that the change in cabin pressure is a natural occurance for any traveller but for someone with frequent Crohn's flare ups this can cause further more enhanced issues 

Your experience to San Fran sounds like a nightmare but it is something i can 100% relate to - trying to hide the pain/sickness and compose some sort of dignity on a long haul plane is tough i can tell you.

Im going to give Windeze a try - Im open to anything!


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## luckystar2001 (Aug 29, 2011)

InkyStinky said:


> Hi Richard - so sorry to hear about the pain you're in. And the anxiety about getting to the bathroom doesn't help anything, either. I haven't been in the position where I had to fly during a flare, so I can't add any good advice for you.
> 
> I'm sorry if this just gives you another thing to worry about, but have you heard of the link between IBD and blood clots? A year and a half ago I was diagnosed with clots (dvt and bilateral pe) "out of the blue" - the docs still don't know what caused them, but I was in a Crohn's flare at the time and I later found out that there is a link between flaring and clots. I wear compression stockings now, and maybe your doc would recommend/prescribe some for you to wear on the flight?


Hi!

I have not heard of a link between IBD and blood clots no, I will definately consider the option of compression socks especially with flying frequently - I may well contact the doc to see if I can get these prescribed

Thanks


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## Misty-Eyed (Aug 29, 2011)

luckystar2001 said:


> When i have pain/diarrhea on the plane its like my normal symptoms X10, I have excruciating pain and sometimes feel like im going to pass out from the pain (yes its that bad) - I spoke to my IBD nurse and she said that the change in cabin pressure is a natural occurance for any traveller but for someone with frequent Crohn's flare ups this can cause further more enhanced issues
> 
> Your experience to San Fran sounds like a nightmare but it is something i can 100% relate to - trying to hide the pain/sickness and compose some sort of dignity on a long haul plane is tough i can tell you.
> 
> Im going to give Windeze a try - Im open to anything!


I really wouldn't be surprised if it was the air expanding inside of you. Air passing my sore crohn's areas is painful enough on the ground! I remember once the air expanded so much inside that my rib cage was extremely painful with all the pressure! Doesn't help that I've always flown long haul flights by myself. One guy was extremely nice when I was hurling in a puke bag next to him lol. Connecting flights used to kill me too.. and 8 hour flight followed by another 2 hour flight. KILLER. 

Funny story, I was feeling very ill in Chicago waiting for my next flight and was dying to go to the loo. In the end I just thought that I'd never see anyone at the airport ever again and that no one knew who I was, so I just had to go to the loo and go for it. So I did and the outcome was pretty nasty. But then a stereotypical big black american lady cleaner came in and started exclaiming at the top of her voice that it was the worst smell she's ever come across and started to fumigate me out of the cubical with air freshner!! I was horrified at the time but I can laugh about it now. Plus I did feel better for letting it out. 

Australia was always out of the question for these reasons alone  I think I would literally not make it.


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## luckystar2001 (Aug 29, 2011)

Misty-Eyed said:


> I really wouldn't be surprised if it was the air expanding inside of you. Air passing my sore crohn's areas is painful enough on the ground! I remember once the air expanded so much inside that my rib cage was extremely painful with all the pressure! Doesn't help that I've always flown long haul flights by myself. One guy was extremely nice when I was hurling in a puke bag next to him lol. Connecting flights used to kill me too.. and 8 hour flight followed by another 2 hour flight. KILLER.
> 
> Funny story, I was feeling very ill in Chicago waiting for my next flight and was dying to go to the loo. In the end I just thought that I'd never see anyone at the airport ever again and that no one knew who I was, so I just had to go to the loo and go for it. So I did and the outcome was pretty nasty. But then a stereotypical big black american lady cleaner came in and started exclaiming at the top of her voice that it was the worst smell she's ever come across and started to fumigate me out of the cubical with air freshner!! I was horrified at the time but I can laugh about it now. Plus I did feel better for letting it out.
> 
> Australia was always out of the question for these reasons alone  I think I would literally not make it.


Ive had that too!! It feels like a baloon is getting bigger and bigger inside and it gets so big that I can feel the top of my rip cage hurting! Im going to agree that it must be the cabin pressure changing playing a huge part in why im always ill 

In the past 12 months I have done two connecting flights - one from Miami - Orlando and one from New York - Vegas and both times I almost missed my connecting flight due to having to go use the loo.

Your experience in Chicago must have been awful I have many times been at the point where public toilet is the only way and yes in goes the *fingers in the ears* for the fear of feeling embarrased should someone say something or in your case even do something! 

myself and my partner would love to travel to Australia but the journey seems so daunting! i may get into a routing on other trips down to a T and consider doing Australia in a few years..

Richard.


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## Misty-Eyed (Aug 29, 2011)

Wow, I'm so glad I'm not the only one! I even got so bad once that the air which was stuck inside me kept coming back up the wrong way as I was being sick. Horrendous! 

But seriously, try the windeze! It breaks the wind down inside of you. It says you should take a maximum of 5 tablets a day so I spread out all 5 just before and during the flight like I said before. Hopefully it should be able to help. I had some really decent flights after that! It's called Gas-x in the states which comes in a nice cherry flavour. 

Luckily, (I say luckily loosely) I'm having all my colon out in October so hopefully I'll be able to have some pain free flights!


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## DustyKat (Aug 30, 2011)

> Australia was always out of the question for these reasons alone.


Oh no...I will never get to see my forum mates down here... I better start saving and get myself a round the world ticket! 

Dusty.


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## Misty-Eyed (Aug 30, 2011)

DustyKat said:


> Oh no...I will never get to see my forum mates down here... I better start saving and get myself a round the world ticket!
> 
> Dusty.


When I'm recovered from my op and I'm rich, I'll come! I dont think anyone will complain about you getting an around the world ticket though, dusty hehe xx


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## hopeful (Aug 30, 2011)

I usually take short trips, so there is little difference in cost between economy and business, and I have found that in business, they never tell you not to use the toilets - I once raced for the toilet during takeoff and no one said anything...

The anxiety is no good though, that alone makes us need a toilet. I have used kava kava on occasion to be less anxious.

When I was feeling very bad I put on an adult diaper for the flight. It was never "used", but it resolved the anxiety.

good luck.


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## luckystar2001 (Aug 30, 2011)

hopeful said:


> I usually take short trips, so there is little difference in cost between economy and business, and I have found that in business, they never tell you not to use the toilets - I once raced for the toilet during takeoff and no one said anything...
> 
> The anxiety is no good though, that alone makes us need a toilet. I have used kava kava on occasion to be less anxious.
> 
> ...


I hope that I dont have to go down the diaper route - Ill leave that as a last resort but Im glad things have improved for you


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## luckystar2001 (Aug 30, 2011)

haha I would love to go to Australia!!


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## Grant (Aug 30, 2011)

Whenever I fly I almost always pre book seats that are near the toilets. I've noticed on some flights you get a queue of people because of the steward/stewardess are doing the trolley run. Imagine having to get past that lot in a hurry. :ymad:
Rgds
Grant


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## luckystar2001 (Aug 30, 2011)

Ive been there.... not nice 

I either fly Premium/Upper Class to avoid the stress of causing a queue as there are more toilets in those classes.


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## hopeful (Aug 30, 2011)

luckystar,

Things have improved on that front because I now have an ileostomy - and yes - that means no mad rush to go to the loo.

There is a good medication that works both for the diarrhea and for pain - amitriptyline - its an anti-depressant at high dose, but at low dose (maybe even 5 - 10mg, some take 25mg) its very good for stopping d and pain.

Do you have the planes flying overhead there in Berkshire?


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## marsham (Aug 30, 2011)

Flew to paris and had no problems. I am really careful what i eat the day before and take lomotil and levid to help with the diarrhea. Take your own snacks to nibble on. One of the best things I have discovered for bathroom situations is I carry a small air freshner spray in my purse. The odor my crohns can cause can be embarrassing. Much of that can be eliminated by using the spray so it is not a problem. There are aerosol brands you can buy at Target and Walgreens. You just have to put them in the xray tray otherwise you will be asked what it is. At Target the spray is in the aisle with the travel sizes. At Walgreens it is in the car air freshner aisle. Both are about the size of a tube of toothpaste so easily fit in my purse. Unless you are one of those people who have a purse the size of a wallet. Personally I could live on a desert island for a month on what I keep in my purse!! 
Good Luck
M


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## luckystar2001 (Aug 30, 2011)

hopeful said:


> luckystar,
> 
> Things have improved on that front because I now have an ileostomy - and yes - that means no mad rush to go to the loo.
> 
> ...


I have used Amitriptyline before and has really helped - unfortunately when i was on the course I could only have it short term  It has come up in 1 or two consultations with my specialist recently but maybe something I can bring up again.

Yes we frequently have planes flying over Berkshire as we are in the flight path from Heathrow


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## luckystar2001 (Aug 30, 2011)

marsham said:


> Flew to paris and had no problems. I am really careful what i eat the day before and take lomotil and levid to help with the diarrhea. Take your own snacks to nibble on. One of the best things I have discovered for bathroom situations is I carry a small air freshner spray in my purse. The odor my crohns can cause can be embarrassing. Much of that can be eliminated by using the spray so it is not a problem. There are aerosol brands you can buy at Target and Walgreens. You just have to put them in the xray tray otherwise you will be asked what it is. At Target the spray is in the aisle with the travel sizes. At Walgreens it is in the car air freshner aisle. Both are about the size of a tube of toothpaste so easily fit in my purse. Unless you are one of those people who have a purse the size of a wallet. Personally I could live on a desert island for a month on what I keep in my purse!!
> Good Luck
> M


I try to be as careful as possible and eat a sensible 'safe' meal the night before and have a bit of fruit for breakfast which usually is ok for me. 

I usually take an aerosol of some sort on the plane with me but I dont want to just mask the smell I want to try and distinguish it! lol

Ill be in Orlando from 24th Sep so ill take a trip to Target/Walgreens and have a look for the air freshner  thanks very much for the tip!


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## Misty-Eyed (Aug 30, 2011)

I wish they sold little air fresheners here! I often just buy those little stick on the wall spray ones. Just annoying that you have to slot the canister in it every time you use it or it'll spray every time it's compressed! Was a life saver when I stayed at a friend's who didn't have any air fresher in their bathroom. I could fit it perfectly in my wash bag.


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## luckystar2001 (Aug 30, 2011)

ahhh! nightmare! at a friends house with no air freshner :S


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## InkyStinky (Aug 30, 2011)

I remember people talking about this product called "Just a Drop" - it's a little vial of liquid and you put a drop in the toliet before you go. From what I heard, it works really well. I think you can get it from amazon.

Richard, there's info on this forum about the link between clots and IBD - here's 2 of them:
http://www.crohnsforum.com/showthread.php?t=16325
http://www.crohnsforum.com/wiki/How-to-Travel-with-Crohns-Disease?&highlight=clots

And there's some general info about preventing clots when flying at:
http://www.stoptheclot.org/100_QA/Travel/travel.html


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## Mayflower537 (Aug 30, 2011)

InkyStinky said:


> I remember people talking about this product called "Just a Drop" - it's a little vial of liquid and you put a drop in the toliet before you go. From what I heard, it works really well. I think you can get it from amazon.


Yep, I got some of this, and I can vouch for its awesomeness.  Mine is called "Powerful One-drop Deodorizer" or something.  It was the brand that had prime shipping on Amazon.  It works sooooo well.  I am keeping it in my purse for emergencies away from home.


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## InkyStinky (Aug 30, 2011)

Mayflower537 said:


> Yep, I got some of this, and I can vouch for its awesomeness.  Mine is called "Powerful One-drop Deodorizer" or something.  It was the brand that had prime shipping on Amazon.  It works sooooo well.  I am keeping it in my purse for emergencies away from home.


I just thought of something - I wonder if this works in airplane toliets since they don't have standing water in the bowl......?


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## debbien (Aug 30, 2011)

I went on holidays to the Dominican at the end of July and was soo worried about the trip.  I talked to my Dr. and got her to prescribe me pred in case i flared.  I had also started taking Konjac root to help with the D. and it was working great for short term use.  BUT.  my last night there, the pain started.  I had painkillers and took them through the night, got on the plane and just put up with it till I got home,  got home at midnight, tried to sleep it off at home and ended up in hosp at 8:30am.  I had more problems,  I was dehydrated and was rwally flaring even before i left.  I am not sure if the konjac root was bad for me or not, but i am not taking it any more and just started Imuran.  
I have to say though, without the konjac root, I would not have had such a good vacation without the D.


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## jenjen (Sep 14, 2011)

I travel a lot and have my Crohn's travel prep pretty much down to a science now. I have found that I would rather be a bit constipated then having diarrhea when I'm away from home so I always have Imodium with me. I start a no fiber diet 2-3 days before I'm going to fly. Before I get on the plane I take two Benadryl (to help me sleep), a Gas-X, and a vicodin (for the pain, but the narcotic will also help bind you up). I take my own food so I can avoid airplane and airport food. I've found that Zone bars don't cause me any problems so I usually travel with lots of them in case I can't find any appropriate food at my destination. If my schedule allows I will plan a free day on my arrival so I can get rest and get my system back on schedule.
I had no problems on my last flight, which was 22 hours from San Francisco to Africa in March.


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## RemyM (Jul 6, 2017)

Hi 

I was diagnosed with Crohn's disease a month ago, my sister has it as well, however, she was diagnosed 2 years ago and she has trouble flying. I have become so so worried about flying now and in two weeks I am going to Thailand and Australia. I will be on a fourteen hour flight and then a ten hour flight not long after that. And then repeat the same flights a week later and then 4 weeks after that. I have only experienced 3 flare ups so and and I can not handle the pain very well. Please, if anyone can help me prevent any kind of flare up with flying can you please let me know? I'm thinking about not eating the day before flying so I may not go to the toilet as much? Also am I able to take windeze while on steroid treatment??
Thank you


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