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Crohn's Disease Forum » General IBD Discussion » Traveling with Crohn's


 
09-06-2014, 04:29 PM   #121
Bonzo 4
 
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God diagnosed 3 yrs ago, but I was told for years I had IBS . It seems my ileum is narrowing. Funny thing is I only have the runs . No pain no nothing. I do however get joint stiffness from time to time . My biggest fear is that someday I would need a bag. That I can't handle .


09-06-2014, 04:37 PM   #122
EvieBaby
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My dad has a bag and that really doesn't bother me. Sometimes I think I'd rather have that than the pain and embarrassment that I have now. Its a really horrible thing to have to deal with isn't it? When I was first diagnosed I felt OK but a few months later the pain started and it was like nothing else I've ever known. Now the worst thing is the urgency and the tiredness
09-06-2014, 04:40 PM   #123
Bonzo 4
 
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No that's the thing Evie I don't have pain . First thing in the morning I go to bathroom I'm regular that way . A good day for me is is maybe 4 to 5 times a day. I can't eat something today next morning have a regular BM and that same day eat the exact same thing and be sick the next day!!!its like what's the deal.


09-06-2014, 04:43 PM   #124
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However Ive had a couple of accidents while sleeping. Which is embarrassing . Luckily my girlfriend is super cool. And I always joke about it but that's what scares me the most about traveling .


09-06-2014, 04:49 PM   #125
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Evie I apologize for all the texts I just realized it's 11:49 pm


09-06-2014, 04:49 PM   #126
EvieBaby
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Yeah its not good. I could eat a sandwich and be fine, and other times its like I've eaten razors. I think its the unpredictable nature of it that's the worst. Its great you have a supportive partner tho. I live on my own with my daughter and she doesn't understand why sometimes we can't go out. She just knows mummy has a poorly tummy and spends a lot of time in the bathroom!
09-06-2014, 04:50 PM   #127
EvieBaby
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Its fine I'm wide awake!
09-11-2014, 10:36 PM   #128
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Could anyone from Australia recommend travel insurance that covers Crohn's Disease? I understand being covered depends on surgeries, hospital admissions etc etc, though if anyone has any good recommendations - please share!

I am heading to the US for my 21st at the end of October and my Crohn's isn't playing very nicely..
09-11-2014, 11:14 PM   #129
Susan2
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If you ring the Crohn's and Colitis Australia 1800 138 029, they might be able to help you (although I don't know whether you need to be a member - I would try them anyway).

https://www.crohnsandcolitis.com.au/
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09-12-2014, 12:12 AM   #130
Grumpy1
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Get a letter from your doctor detailing your meds and carry it with your meds or passport that way you don't get hassled at the border crossings for carrying drugs - sometimes even if they are in the original prescription packages the border guards can be a little over zealous - a letter from the doctor and/or the drug company (humira) tends to stop that.
09-12-2014, 10:33 PM   #131
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Just a mote of caution when traveling to a new area, my last trip to the Dominican Republic resulted in a parasitic infection which when treated led to CDiff infection. Take along a Flagyl/Cipro cocktail or whatever your GI would use to treat a CDiff infection.
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09-13-2014, 02:39 AM   #132
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I have had cipro with me and asked my doc couple of times if I should start taking it, never did. It is adviced only if you have some sort of angry stomach bug and can not get to hospital to check it out. Taking it without really needing it may lead to getting that c.diff. Local strains of bacteria require local knowledge and sometimes local antibiotics as well so its better to seek hospital rather than start popping pills on your own. C.diff is mostly caused by antibiotics.
12-06-2014, 08:15 AM   #133
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It is really great to see so many good suggestions here. Travel is a great passion for me and I go on several different trips every year. One thing I have always done is spent time mapping out restrooms available where I will be. This way I know well in advance how far away they are, if it costs anything to use them, etc. I also try to make sure I know exactly how to ask for a bathroom or directions to one in the local language!
02-08-2015, 09:43 PM   #134
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In some developing countries even a bottled water could be dangerous. I've heard stories of having major flare-ups drinking bottled water from some minor local brands in developing countries.
02-24-2015, 11:24 AM   #135
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Hi all,

I'm planning a trip to Europe this summer and I'm trying to figure out how to get my IBD medication there.

I get Entyvio every 7 weeks and I'm scheduled to get in right in the middle of my vacation.

Does anyone know if it's possible/easy to get intravenous IBD drugs in europe? I know that they're available to EU citizens but can I get them as a traveling american? I could plan to be in Berlin, Zurich, Prague, Vienna or Budapest at the time that I need the drug.

Any info on this would be so great--can't find anything via google!!!
02-25-2015, 07:21 PM   #136
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I suggest contacting and joining (free) a Canadian based organisation for medical assistance whilst travelling - IAMAT. A goggle search for IAMAT will provide their URL.

They have a list of doctors throughout the world who maybe able to assist in giving you the medication provided you can supply it.

Travel with the medication should not be too difficult. I have travelled with several medications requiring cooling and have successfully used an iCool Medicube that kept the contents cool for over 42 hours. There are smaller versions available that should suit yourself - in Australia they are available from MediActive. This company's head office is in France and a goggle search for MediActive France will provide their URL.
03-13-2015, 10:49 PM   #137
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This probably got answered somewhere in this thread so forgive me for repeating the question but....

....how does one travel if you're taking a medicine like Humira, that has to be kept refrigerated until you take it? I was on vacation last year and I couldn't figure out how I was going to handle that so I came home a week earlier than I needed to just so I could take my medicine. And this year, I used my vacation time on a staycation just so I wouldn't have to worry about it.
03-14-2015, 09:49 AM   #138
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Ice packs! Which is a bit trickier when you're flying, what with the ban on liquids in the cabin, but it's quite possible to take it - I travel with Humira all the time. So what I do is take a little cool bag to fit my Humira pens in and start with no ice or ice packs except for the frozen meal that I take for the plane.

I don't really eat plane food and like to know that I'll have something 'safe' with me that will keep me as healthy as possible on the journey. But it also does double duty as an ice pack that I'm allowed to take with me on the plane! I've never had a problem and don't imagine anyone would unless there was a high liquid content to the food...so basically not soup!

Then when that frozen meal ice pack has either defrosted or I've eaten it and I'm on the plane, I ask the flight attendants for ice and put it in a ziploc bag in the cool bag.

And then if I have a connecting flight and have to go through security again I have to remember to throw out that ice before I get to security and repeat the procedure once I'm the other side.

You don't need to worry about the Humira being at room temperature for a short time - it still works when it's been at room temperature for up to 8 hours so if you keep the time much less than that it's fine.

And I've never had anyone question me about the syringes/pens going through the x-ray machine either. Sometimes I explain in advance and they're not in the least bothered. It's a tiny quantity of liquid and I think they get a lot of people travelling with similar things. The first time I travelled with them I was nervous so I got a letter from the pharmacist who delivers my Humira stating what it was and why I carry it but I've never needed it.

Edit: I just read in the Humira thread that they now say it can be out of the fridge for 14 days. I don't know if I can adjust to that idea lol but I guess it makes travelling a lot easier. If anyone still prefers to keep it refrigerated because that's what we're used to now, the above tips still work
03-20-2015, 05:28 AM   #139
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Traveling is fun but do not travel without your medication. Be realistic about what you can do and more important read about the local disease if you travel to countries where you need vaccines.
04-03-2015, 04:25 AM   #140
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Hi,

I'm going to Thailand in July and we're making a quick stop in Bahrain. I take both loperamide and codeine and I have learnt that Bahrain has a zero tolerance policy in re to codeine and Thailand seems pretty strict as well. Both meds help in re to my output ( I have an ileostomy) so rather than risk taking the meds with me, even though we are over there for forty days, I was wondering if anyone had any alternatives to either loperamide or codeine that are permitted in these countries?

Thanks.

Doug
04-08-2015, 03:26 AM   #141
Layla
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I wouldn't worry about Thailand as you can get virtually anything without a script at pharmacies there. Bahrain is different though, I would contact the airport/customs authorities over there and ask if it's OK as long as you can produce a script.

They don't check like mad though, I had paracetamol with codeine with me, I had no idea it wasn't allowed, and had no trouble at all, no one asked about medication at all.
06-27-2015, 09:13 AM   #142
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I'm travelling to Lisbon soon, so I will bear this all in mind.
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07-18-2015, 05:15 AM   #143
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This post is so helpful! Thank you everyone.
I have a quick question about travelling. I perhaps only 'go' one or two times a day, but they're usually embarassing times whilst in the bathroom, which is fine when I'm home and with people who understand however it becomes a problem for me when I'm with people I don't know well and they're hearing everything going on in there. So it puts me off travelling and I'm finding I'm not travelling anywhere because of it, but I don't want to be that person that let's my crohns hold me back from everything! So anyway....I will quit the rambling.....

My question is how much would you recommend taking the tablets that stop you from going? I've never tried them before, but I just wonder, do they work on us crohnies? And if so, how long do they normally last for? You know, like if I went away for a weekend would they stop me going for the weekend so I could then go when I got home?

Sorry for all the chatter and questions, I just want to start travelling again and would love some advice from you lot!

Thanks. And have a good day! X
07-18-2015, 08:32 AM   #144
Susan2
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I know from years of experience that it can be embarrassing, but I really don't think that it is a good idea for those of us with Crohn's to take "stopping up" medication.

The Japanese have these amazing toilets that play all sorts of things to cover up the noise of going to the toilet - actual toilet flushing noise, music of all sorts and even sometimes things like trains past.

You could take some sort of music player in with you and, if anyone commented, you could say something like: "Some people like reading the newspaper in the toilet; I like listening to music." Or, if you think that you are going to be quick, you could flush the toilet first - you might get a bit damp, but the noise will be covered by the flushing sound.

Most of the problem is in our own minds so perhaps you could use some sort of music player and ear pods to block the noise from hearing it yourself.

I'm not being frivolous and I understand how you feel, but you mustn't let it stop you travelling. I travel and have had my ileostomy bag leak at the most inappropriate times and in the most inappropriate places* but I have learnt to say: "Stuff 'em! I have my problems and I am sure that they have theirs."

*The latest on was in an ecolodge high up on the Island of the Sun in the middle of Lake Titicaca, Bolivia. We had totally run out of water so there I was at 2am trying clean myself up with the contents of a bottle of drinking water!
07-19-2015, 03:48 AM   #145
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I travel every 3 months to Holland to see my mum. I stay away from anything that might trigger the runs. So in my case I mainly eat protein for a couple of days before going and that does the trick most of the time. I cut out all the carbs.
It's only a short flight, so I never need the toilet in the plane, but I do get an isle seat just in case.
07-29-2015, 11:12 AM   #146
earthshine
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For travelling, I would take probiotics, enzymes and psyllium fiber with me...

Also, some of these to help with cleaning during restroom trips:

- perianal irrigation bottles (http://www.amazon.com/gp/product/B00..._detailpages00)
- guaze
- kleenex packets
- pads
07-30-2015, 09:14 AM   #147
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Thank you so much for your advice everybody, you have all genuinely made me feel a lot better about travelling with others. And I came to realise, although I may find some parts of my disease embarassing, if the friends I am with are real friends then they will understand problems that I may have. All the tips you have give me are fantastic and I am going to write them all down and keep them with me for when I go travelling.....Japan may be first on the list.....thanks again everybody!
07-30-2015, 09:45 AM   #148
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I'm going to Japan as well, next spring (going to see the cherry blossoms!). I'm a bit nervous but mainly excited. I just hope my stomach behaves itself. I've been trying to learn phrases that will be helpful - "toire wa doko desu ka?" means "where is the toilet/bathroom?"
07-30-2015, 10:59 AM   #149
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Ooo them cherry blossoms will be beautiful, I'm sure! Have a great time. Haha love the helpful phrases...if all else fails, just carry a card with a picture of a toilet on and you can just point at it in an emergency!
08-07-2015, 03:35 PM   #150
Cat-a-Tonic
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Ha ha, well, I am planning on bringing a notebook (I've been jotting down helpful words and phrases in a journal, so it's coming with me for sure), so if all else fails I will just draw a picture of a toilet in my journal that I can show to people. But I definitely have that phrase memorized, and I know that "toire" (pronounced like "toy-ray") is the word for toilet. And it's all written down in my journal. As long as I don't lose that journal, I'll be good!

So I found out something weird about Japan specifically. I read that if you end up in the hospital in Japan, you (or your family/friends) need to bring your own sheets & blankets, and you need to launder them yourself, and also you need to have your own food brought in. Apparently the hospitals there don't provide any of that stuff - they give you a bed and a room and a doctor, but you do the rest. So now I *really* hope my stomach is okay when I go to Japan! It's going to be an expensive trip anyway even without needing to buy sheets, blankets, etc. Goodness.

http://www.learn-japanese.info/hospital.html
(Scroll to the bottom to see the part where they talk about having to bring & launder your own sheets etc)
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