Traveling with Crohn's

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

MrBleu said:
Hi there.



I need decent air circulation because of my constant heat/hot flares.



Take care.
Click to expand...


Mr Bleu. Is hot flares a symptom of crohns? I always feel hot and even get clammy hands and feet and I've had crohns since 2007!


Crohns Disease-Diagnosed 2007
 
Traveling is scary,I always worry about getting sick.Especially on a cruise . I have thoughts of what if I get an obstruction? Which I've never had, but these are things you think about when traveling.
 
Hi all,
I'm flying to Paris in a week and am somewhat concerned since my Crohn's is very active and seems to often get worse when I travel. Not on the trip itself, but when I get home for some reason. Does this happen to anybody else? I'm really curious if other people also have a belated reaction to travel.

My situation can fluctuate drastically from one week to another, so I'm taking cyprol and flagyl just in case along with a few cans of modulen and will hope for the best.

I found a great smart phone app called toilets in Paris which directs you to the nearest public toilet (brilliant!!!). I assume there are similar apps for other Euro. cities.

Last time I traveled was right after I got a P.E.G (gastro stoma) and it must have been visible through my shirt since a security guard insisted on seeing what it was. After that I switched to looser clothing not to be hassled about it.
 
Does anyone know how medical insurance works when you travel internationally? We have insurance here in the US but will be going to Australia for two weeks. If my son were to get sick in Aus and need medical care... how does that all work out with US insurance?

(I haven't had time to call the insurance company directly yet.)
 
You would need to take out travel insurance Mehita, plus there is no reciprocal health agreement between our countries.

Sarah is going to the US next month and has taken out travel insurance. It was well over double the normal travel insurance costs but that was because they covered for her Crohn’s.
 
Navsu said:
Hi all,
I'm flying to Paris in a week and am somewhat concerned since my Crohn's is very active and seems to often get worse when I travel. Not on the trip itself, but when I get home for some reason. Does this happen to anybody else? I'm really curious if other people also have a belated reaction to travel.
Click to expand...

Yes, I notice when I travel I am generally okay, especially during the first few days of the trip. I tend to get constipated if anything (stress?) but no problems with D. It's when I get home that I play catch up and have about a week of troubles.
 
I know what you mean I was just in New Orleans over the weekend no problem came home, and bam I've had the runs real bad. But when I go to Europe I'm ok what the hell psychosomatic !'
 
I am in a traveling funk. I really want to vacation this summer. I don't see my new specialist for 2 weeks. I have no idea if I'll be trying any new meds or getting further testing. I am hoping to at least wean from this Entocort but don't know how that will go. I really want to get away but I'm too afraid to plan anything. :(
 
I recently went on a 2 month stint overseas to Italy, Greece, UK and USA (finally, after being far too scared to travel for so long). Apart from a couple of bad days, mostly due to sheer exhaustion, I was totally fine! I took a whole range of medications with me, including Antibiotics, Oxycodone, Ondansetron and Prednisolone as well as over the counter meds such as Imodium and Buscopan, and I only needed a couple of Imodium and a couple of Oxycodone's during my entire trip!! Nothing I ate or drank bothered me in the slightest, and now I'm so annoyed at myself for being so worried for so long! I did however take out a great travel insurance policy with Southern Cross Travel Insurance, which covered my Crohn's and gave me piece of mind. I'd recommend anyone from Australia using them! They were so much cheaper :dance: (1/5 the premium!) than CoverMore (the only other insurer that would cover Crohn's Disease).

I really want to help give other IBD sufferers some comfort and confidence to travel. I feel like we work ourselves up so much sometimes, that we miss out on some really great experiences. Just because one person had a bad experience, doesn't always mean you will - I had a sensational time!! Nothing could stop me. :emot-waycool:
 
I went to Spain to stay with my mum and while I went prepared with everything under the sun I only needed some immodium. I've never felt as good as I did while I was there. I could eat most things and one day actually passed a semi solid stool which is unheard of for me. I should move there!
 
I was so worried because we spend a lot of time out doing things and not knowing where a toilet was was terrifying but I was so surprised! Things are pretty rubbish now but that break of feeling relaxed and generally well was one I haven't felt in so long!
 
Sometimes for me if I don't think about it too much I'm fine. I believe a lot of it is psychosomatic .
 
I don't take any meds at all, I don't believe in them, I don't have it as bad as a lot of people here. I don't like the side effects that come with them and the guarantee that it will do more harm than good. I eat drink anything and everything .
 
I think that's a really good attitude to have. I'm considering asking my doctor to take me off the humira injections. I don't feel like they're of any benefit and I'm not taking anything else. I agree though that a lot of it is in my head. The thought of having a problem is generally going to cause one!
 
Trust me I'm going on a meditaranian cruise and I always fear I will get sick, and nothing happens .
 
I was diagnosed in 2005 but its just slowly been getting worse. I had a Seton done on Thursday and that's my first surgical intervention. Its made me feel very low to be honest but I'm just having a bad day today!
 
Its like a stitch thing. I had an anal fistula so this is apparently to help it drain and heal. Its not very comfortable though! How long have you had yours?
 
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 .
 
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
 
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.
 
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 .
 
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!
 
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..
 
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.
 
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.:stinks::stinks::stinks:
 
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.
 
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!
 
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.
 
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!!!
 
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.
 
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.
 
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 ;)
 
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.
 
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
 
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.
 
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
 
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!
 
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.
 
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!
 
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?" ;)
 
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!
 
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. :p 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)
 
Cat-a-Tonic said:
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?" ;)
Click to expand...

Hi Cat-a-Tonic
That is great, I had a huge smile on my face for the whole Japan trip......except.....I did feel quite ill with the food. I never worked out what it was, perhaps the soya beans or soya sauce. That spoilt a few evenings. The little rice traingles with sour plum inside however I thought were heavenly. And some of the "sweets" also made from rice flour.
I'm sure you will, but take some trusted items with you. Also beware, I thought I was getting a lovely chilled carton of apple juice and it turned out to be chilled green tea. Also nice, but not when you are expecting apple juice.
Anyway, once you go into the japanese toilet you might never want to come out again, they are fantastic!!!!!!!! Once you know which button(s) to press for optimum comfort!!!!
Etiquette: if there are slippers in the toilet it means you have to take off your shoes outside and wear those slippers in the toilet.
I am jealous, please enjoy your travels for me too.

ps sorry if someone has already written similar stuff, I just saw Japan and my memories got triggered.
 
Just to let you know, I had a pillcam (capsule endoscopy) on thursday and took a flight on friday. The capsule set off the detection device and I'm glad I kept the hospital papers with me (and the phone number of the specialist nurse) to prove that my story was true.
 
Thanks, King of Orange! :) I do pretty well with things like soy sauce and other soy products, so that should be fine for me. Rice and fish and seaweed and sushi and miso and noodles are also all fine for me, so I should have a lot of food options. I don't do well with caffeine (migraine trigger) so I will avoid the green tea that look like juice, and I have to avoid other food triggers such as coconut and sesame seeds. Those rice triangles with plum sound delicious. Thanks for the info! And yeah, I'm excited, I've heard that the toilets are amazing. I'm not going until April, but I will definitely post some photos after my trip. :)
 
It's awesome reading all your tips on here and hearing your stories about you successes. I am taking a gapyear next year, mainly in Australia which should be fairly safe, but starting in Asia (China, Japan, Vietnam, Cambodia) which I am a little nervous about.

I have started writing blog posts about things I am doing to prepare for the trip, but any other advise is always welcome!

I cannot post the link as I need more replies. but I will do later on if people are interested.
 
Hello all. The wanderer returns!! Got my annual birthday notification and I'm home for Christmas so helllloooooooo.. I've missed you all. Sorry for being MIA and neglecting my monitor duties. Dodgy mobile Internet means I don't get on much. But I'm hoping to get fast Internet when I go back in Jan. In Glasgow with DS in his baltic student flat
🐧❄⛄
Still very happy and well in Myanmar. I've transferred to a post at Yangon University and am teaching English Lit so am in my element. Have my own flat now too and access to supermarkets so mainly cook for myself so tummy is mostly happy. Myanmar food is not very palatable unfortunately and swimming in oil so with the malabsorption issue just goes straight through. In my last posting we were offered a lot of food. It's very rude here to refuse any kind of gift so my poor housemate had to eat it all.
For George above - hi ☺ - and other travellers in Asia - you should be fine as there is such a variety of food unless you are in remoter areas. I love Thai food and just come back from a holiday in Indonesia where the food was fab. Asian beers are very good apparently but I can't do beer. I stick to bottled water and red wine if I can find it! I don't eat street food - just not worth the risk.
Look forward to hearing about your adventures George - let me know if you are coming to Burma.
Hope you are all well and if not, hang in there and hope you are getting the help and support you need.
Having just passed my 3 year remission mark, I am celebrating the support, advice, hugs, tears and humour you all shared with me when I was first ill. Now looking forward too 🎅👪🍷🌲🍗🎄🎁
 
Thanks Grumbletum!

I booked my flights on Wednesday and I handed my notice in yesterday!! so after christmas I have 6 weeks at work, then off on my adventure!

Thanks for the advice, I plan on staying in places a little longer than just a few days so I can rest and hopefully cook my own food! I think that will be the main two things!

I will keep you all updated with how things get on when I'm out there, hopefully I can convince a few other people who feel as limited as I sometimes can, to get out there and explore.

Burma is on the list, but its towards the end of my Asia part, so if i get ill I will be skipping it and going back after a few months in Australia! so I might send you a message closer to the time, any tips of where to go would be greatly received! :)
 
Would love to read your site George. Thank you for sharing.

Would it be possible to type out name of link, the link is not working on my end
 
Anyone have input on travelling to 3rd world countries with more infectious diseases while on immunosuppresants? My brother is getting married in India this Fall...have been told by some doctors not to go, but another who I really trust and IS Indian and GI IBD specialist says dont even worry about it...says If super worried go off the 6mp for a couple weeks prior but do not stop the Humira. Was just worried about the TB there and other infections that could become complications on these strong drugs.
 
Travel

Keep medications in your carry on bag. I have arrived at my destination but my luggage didn't. It took a week to get my luggage.

Also if you are going to leave any of your meds in your hotel when you leave your room lock them in a safe.
 
Last edited:
aypues said:
Anyone have input on travelling to 3rd world countries with more infectious diseases while on immunosuppresants? My brother is getting married in India this Fall...have been told by some doctors not to go, but another who I really trust and IS Indian and GI IBD specialist says dont even worry about it...says If super worried go off the 6mp for a couple weeks prior but do not stop the Humira. Was just worried about the TB there and other infections that could become complications on these strong drugs.
Click to expand...

I don't have any advice in regards to traveling to 3rd World countries. But I wanted to tag Madhu.

Her husband is on Remicade and they currently are on a trip to India. She might be able to give some advice.
 
Georgeforaday said:
Incase anyone is interested, here's what I am doing to prepare for my trip. If anyone has any other ideas, I'd love to hear them.
I hope it helps someone who like me, became quite lost when I was first diagnosed and struggled to find a balance. :)
Click to expand...

Great post! I admire people like you George. I just came back from Mexico, the most developed part (Playa) and had hard time matching food with my Crohn's... Although fish there is so fresh and fantastic - should have stayed on fish alone. Anyway , good luck !
--george
 
I wrote up a synopsis of my recent trip to Japan with regards to how the trip affected my IBD.
http://www.crohnsforum.com/showthread.php?t=77471
(In a nutshell, most of the toilets were great, the food was really easy on me, and I felt really well!)

I had been so nervous about going to Japan, all the "what ifs" involved with travelling halfway around the world and not being able to speak the language and the volatility of my health and so on. Fortunately though I did great and had a wonderful trip. I spent 3 weeks in Japan and loved every minute, I already want to go back! I'm so glad I was able to take a trip like that and it's just inspired me to be more adventurous and to travel more. Now I can't wait to have more adventures!
 
aypues said:
Anyone have input on travelling to 3rd world countries with more infectious diseases while on immunosuppresants? My brother is getting married in India this Fall...have been told by some doctors not to go, but another who I really trust and IS Indian and GI IBD specialist says dont even worry about it...says If super worried go off the 6mp for a couple weeks prior but do not stop the Humira. Was just worried about the TB there and other infections that could become complications on these strong drugs.
Click to expand...

Hi aypues, sorry for the delayed response. Just noticed the tag. Assuming you are the one with IBD, are you currently flaring? My husband is in remission now, so his GI gave us the green signal for travel. There is not much to worry about TB here. It has been mostly eradicated in india, as you probably know. You just have to be careful with the pollution when going out, and my husband seems to be doing just fine so far. I have a lot of wipes and hand sanitizers with me to keep clean. Only if someone with TB coughs on you or like, you are likely to get TB. I think the chance is fairly less. Good luck :)
 
Just thought I'did share my experience. About a year ago I flew with my Humira pen from Arkansas to New York. I was absolutely terrified they were going to open my pen or even confiscate it. I went ahead and packed it in my carry-on. I put it in its carry case with the prescription label. I was pleasantly surprised when everything went extremely smoothly. The TSA was kind and understanding. Nobody manhandled or opened my medicine. They even went as far as to hand screen my medicine when I told them I was concerned about the radiation if they x-rayed it.
 
gracem said:
Just thought I'did share my experience. About a year ago I flew with my Humira pen from Arkansas to New York. I was absolutely terrified they were going to open my pen or even confiscate it. I went ahead and packed it in my carry-on. I put it in its carry case with the prescription label. I was pleasantly surprised when everything went extremely smoothly. The TSA was kind and understanding. Nobody manhandled or opened my medicine. They even went as far as to hand screen my medicine when I told them I was concerned about the radiation if they x-rayed it.
Click to expand...
Great to hear about such a positive experience. :thumleft:
 
I travelled with my Humira a few weeks ago, too. The TSA folks were great. I hooked the cooler bag to my briefcase and told them what it was before I put it through. They just swabbed the ice packs and were good. Didn't even really care about the pens. One guy gave me a tip that I should make sure it's frozen still (it was). They get suspicious when it's just a gel pack.
 
I went to Japan a while back. A few days before going I started to have a flare and I was genuinely worried I might have to fly back home. I had promised my wife and didn't want to back out. I took 4 cans of Ensure with me and that was all I had on the flight over. I was very picky what I ate as I didn't want a blockage. After I got back I had a well period for about 4 weeks but it is flaring up again.
I sort of wonder if a holiday boost your immune system?
 
My son is diagnosed with Crohn's disease couple of years ago and we are planning to go to India soon for a month long vacation. He developed antibodies for Remicade and that is out from the list. He's currently on entocort (6mg). We are planning to take him on 3mg entocort. Once. .we are back. .we'll start Humira. Please advise if it's safe to travel.
 
momof8yrold said:
My son is diagnosed with Crohn's disease couple of years ago and we are planning to go to India soon for a month long vacation. He developed antibodies for Remicade and that is out from the list. He's currently on entocort (6mg). We are planning to take him on 3mg entocort. Once. .we are back. .we'll start Humira. Please advise if it's safe to travel.
Click to expand...
My husband is on remicade for the past year and we recently went to india for a month. I was so petrified he would fall sick but he was actually fine. His doctor gave us antibiotics to carry, incase of D issues. Did you talk to your son's doctor about travelling? I suggest you discuss and take all precautions before leaving. Have a good trip
 
Madhu said:
My husband is on remicade for the past year and we recently went to india for a month. I was so petrified he would fall sick but he was actually fine. His doctor gave us antibiotics to carry, incase of D issues. Did you talk to your son's doctor about travelling? I suggest you discuss and take all precautions before leaving. Have a good trip
Click to expand...
Thanks a lot Madhu. We did speak to his doctor. He's okay with my son traveling. Is it okay if I PM you? Sorry. .if I'm asking for too much.
 
aypues said:
Anyone have input on travelling to 3rd world countries with more infectious diseases while on immunosuppresants? My brother is getting married in India this Fall...have been told by some doctors not to go, but another who I really trust and IS Indian and GI IBD specialist says dont even worry about it...says If super worried go off the 6mp for a couple weeks prior but do not stop the Humira. Was just worried about the TB there and other infections that could become complications on these strong drugs.
Click to expand...
Did you finally travel to India? How was your experience?
 
My son has just returned from a trip to Japan, the UK and the US.

I asked the GI about travelling and his only concern was if he was going to a third world country. If he had been he would have given in ‘just in case scripts' for antibiotics and prednisone to have filled prior to him leaving.

He is on Pentasa, Azathioprine and Humira. in Aus you are able to have 2 scripts of Humira filled (4 pens) without needing to seek special permission. He was in Japan for 2 weeks, staying with my daughter so storage was not a problem, the issue was when he left Japan and would be moving from place to place frequently and some of the accommodation did not have a fridge/freezer in the room. This was overcome by leaving Japan the day his Humira was due and then he was able to travel with the remaining pen out of the fridge for the 2 weeks prior to its administration.

Once you remove your HUMIRA Pen or prefilled syringe from the refrigerator, it must be used within 14 days. If not used within the 14 days, it must be discarded.
https://www.humira.com/global/frequently-asked-questions
Click to expand...

He had no issues in any of the countries he visited in regards to adverse effects from foods, in fact it was the opposite, he remained very well for the 6 weeks he was away. :)

There were also no issues with the medication he was carrying, however the GI did provide him with a letter to carry in case any issues should arise.
 
Definitely agree on packing more than enough meds. Also, I would go further and say, make sure to bring your meds in your carry-on if flying. one time, I only packed about two days worth in my carry-on thinking it wouldn't be a problem but the airline left my bag in England (lay-over) and it took a full week to get it back.

Also, if possible before a trip, if you are flaring or anticipating a potential flare, doing a little research of clinics or hospitals in the area you are staying is helpful. I ended up having severe nausea and vomiting in Ho Chi Minh City, Vietnam. My friend/travel buddy ended up having to do some research while I rolled around in bed trying not to die. Turns out a lot of the area hospitals had terrible reviews and it was the little private clinics that had great reviews. We found a clinic with good reviews and had to walk 15 minutes to a clinic. Also, it was Christmas Day and they were open until like 2am. Ended up getting bloodwork, IV fluids/electrolytes, prescription meds (they had a great little pharmacy) and some Ambien so I could get some sleep. They also offered to make a follow-up appt two days later but I was already going to be gone from HCMC by then. Great experience and I'm just glad we did some research before just going to the hospital.

I have done extensive international traveling (especially to third-world/low-income countries) in the past year since diagnosis so if anyone has any questions, definitely feel free to PM me or just ask!
 
I am going on a trip to North Carolina less than a month after diagnosis of crohns. 10 hour car trip.... mildly terrified I will flare. Any advice?
 
Which bit of flaring are you most worried about? Try to prepare for all eventualities as worrying about whether something will happen is likely to increase your stress levels and therefore the likelihood of something actually happening.
 
Susan2 said:
Which bit of flaring are you most worried about? Try to prepare for all eventualities as worrying about whether something will happen is likely to increase your stress levels and therefore the likelihood of something actually happening.
Click to expand...

Honestly the severe diarrhea that comes with a flare scares me. I get carsick anyway so I will be taking quite a few Dramamine to fend off nausea. They make me really tired and I am hoping that if I sleep the majority of the trip it will be easier.
 
Susan2 said:
Which bit of flaring are you most worried about? Try to prepare for all eventualities as worrying about whether something will happen is likely to increase your stress levels and therefore the likelihood of something actually happening.
Click to expand...
Having accidents
 
Okay, that I know something about.

Map out the toilets or possible toilets along your route - service stations, cafes etc as well as public toilets. Like the Queen, take every possible opportunity to go to the toilet but don't strain.

The Australian Crohns and Colitis Association issues a card that says:

PLEASE HELP - CAN'T WAIT
Due to a medical condition, our member requires the urgent use of toilet facilities.
Thank you for your consideration.

Do you have anything like that available? It has enabled me to use toilets that are not usually not open to the public.

Not very elegant but invest in some plastic pants and underneath them wear incontinence pants. No-one but you will know that you are wearing them but they will help to build your confidence and reassure you that you can cope, as well as dealing with accidents.

Put something waterproof and preferably disposable on your car seat - old towel (I used to buy, for almost nothing, the ones that they sell as dog towels from the op/charity shop), then waterproof sheet (disposable blue hospital pads are good), then another old towel on top to sit on. If you have an accident, just roll the whole lot up and put in a large plastic bag, tie up and dispose of in a rubbish bin.

Use the next available handicapped toilet to really clean yourself up.

Carry lots of towels, plastic bags, wet ones, changes of clothing - better to have far too much that you don't use than not enough.

As we all know, stress has a very negative effect on our bowels. Being prepared won't stop you having an accident but might reduce the risk of it.
 
I would recommend staying away from refined sugar as well as dairy. Lots of people also tell me to cut out gluten, it doesn't seem to improve anything for me, but it might be different for other people. Refined sugar is what really makes my symptoms worse.
 
Crohns Warrior ((Kristy) said:
One more thing, I used to swear by water to keep from dehydrating, however my dr's informed me that while it does help all that you do is void it out (urinate) which means that you don't keep any of it in and it takes a whole lot of water to hydrate you. When if you sneak in a coke it has calories and helps your caloric intake which also means that you are holding more of it in. The carbonation also helps to ease your stomach and Coke is what works best for me. Also try not to eat the day before you travel, that way the stress from traveling doesn't have you running to the bathroom every 5 mins! Make sure to take baby wipes with you as well, if you do have multiple "meetings" in the restroom you don't want to get raw from the cheap TP! It's also great to have if you have an accident as well! Good luck and safe travels ~Kristy
Click to expand...

Hi Kirsty, feel its important just to weigh in with a few comments. Being on Questran I find that any carbonated drinks has me peeing to a ridiculous degree, also the same consequences with coffee & even sometimes tea. So for me water is the way to go a lot of the time.
Also carbonated drinks react with the questran & make me very bloated. So I steer clear of them as much as possible tbh.
Best Wishes
Grant
 
Hi Ron, think you have to email then a few weeks before travel. On long haul we've noticed that veggie meals are earmarked for certain passengers. Feel sure that provided you give them enough time they'll sort it out for you.
Rgds
Grant
 
Susan2 said:
The Australian Crohns and Colitis Association issues a card that says: PLEASE HELP - CAN'T WAIT. Due to a medical condition, our member requires the urgent use of toilet facilities. Thank you for your consideration.
Click to expand...

Last time I handed this card to someone, they spent so long looking at it, and showing it to others, and humming and hawing.......that I pooed myself in their office in the meantime.

Lucky I was wearing a pad. They then said no because it wasn't an "official" card, and I think it had Nestle advertising on (which did look odd and unofficial).

Tried to use this card several times and never worked as well, as I hoped it would.
 

Similar threads

S
New and seeking for experiences
Replies
9
Views
2K
Carabop1
C
V
Quite a bit of questions
Replies
14
Views
2K
Victorcdrm
V
B
My healing story: towards full recovery from UC
Replies
2
Views
2K
kisseefitzrandolph
K
Ignotius
Are biologics after surgery a must?
Replies
14
Views
2K
Ignotius
Ignotius
RoyW
My tips /advice after being in remission for 10y
Replies
6
Views
5K
Cliffandmorgane
C

Latest posts

Back
Top