Community Forum

     I, too am going on a very long flight (11 hours) and I am dreading this.  I have no idea how to handle this.  It seems that diet doesn't seem to play a huge role in my urgency.  I also think I psych myself out, and this leads me to having to go to the bathroom, which in turn leads to more stress.  It is a catch 22 situation.  I was diagnosed 3 years ago, and my solution was to just not travel.  I am tired of not being able to do things, and I want to tour Europe for a month before starting medical school.  Besides diet advice does anyone have any suggestions about touring and traveling in a foreign country?  I have had to wear a diaper on some occasions, and will do so again if I need to, but obviously preventing an accident is better than having one!  Please any suggestions would be really appreciated.  I am sure this has been addressed many times, but I need all the help I can get!  I am a pharmacist who has dispensed a ton of low dose Naltrexone.  I would love to hear feedback on this if anyone has had good/bad experiences.  I know one thing this disease will definitely make me a more compassionate caring doctor!

 Reply posted for rachj.

   Hey There,

             I am sorry I didn't respond sooner, but I have not been on the site for a long while, as my symptoms seemed to be under somewhat control.  I would like to first say I can totally empathize with your situation, and I feel for you as this has affected you at a very young, and tough age to have anything embarrasing in your medical situation.

       I am 40 years old, and I have had this disease for 3 years, and I have had your situation many times, and have had quite a few accidents.  I wish I had answers, but I don't.  You just have to brazen it out, and keep repeating and believing this disease does not define me as a human being.  It is a very humbling and humiliating disease, but I think it also toughens you up, because it shows you how much one can bear, and still get back up.

   I have cut out Gluten, which has helped, and have been on Mercaptopurine for about a year, and this has helped, but I am going through a vicious flare right now, which has resulted in 2 accidents.  Very upsetting and humbling, but I try to just clean up, and go on. 

I wish I had more advice, but I don't.  Just don't let the disease define or consume you would be my only, very limited, words of wisdom.

                                                Good Luck,

                                                     Yitzy

 Reply posted for dot.

We did a 107 day World Cruise earlier this year.  I was scared to death of what I would do on the plane, on tour buses,  in 3rd world countries, on the cruise ship.   I did have a few issues - but was able to handle it ok with my 'supplies' on hand.  I did miss some meals, shows, tours, etc. but was able to do most of the things.

My first course of action was to barely eat - not that food has a big impact on my 'urgency' but I figured if there was no volume, less chance for accidents.  So on the entire cruise, I lost 50#'s - which was a great side affect.  Also, I never ate in a port - nothing except my bottled water until we returned to the ship - which made for some LONG days sometimes.

I also wore adult pads - not a diaper with legs because that would be hard to pull off without making a mess if you had one.  The large pads are just huge pads - about 15" long and 6" wide with sticky tape.  They are really for urine incontience - I can't find any for bowel issues - but they give me a buffer in case of an accident but don't really absorb much. 

I also now take Xanax when needed for added stress.  It does calm me down some and make me not worry so much about where the next bathroom is.  I know the mental 'where am I going, where is the bathroom, can I make it in time' is a big part of this disease.

I also definitely get an aisle seat in the airplane, preferably close to the bathroom.  Also, I have learned that if you have any little feeling at all that you need to go - go right now.  Don't wait til  the next feeling - it is too late - I have done that - thinking I could make it and didn't...how embarrasing, humiliating and frustrating.

I also carry extra clothes, pads, wipes, underware in my purse at all times...it is a hassle - but you have to be prepared with this disease.

Good luck -

 Reply posted for mpjjag58.

Can you email me with the name of the over the counter medication you used? I really would appreciate your information. My email is rwillsatlaw@yahoo.com

Thanks!

Deb

 Reply posted for yitzyc.

Traveling is always a problem no matter how long you live with Crohns and short bowel, I have since 1960.  It went from no problem when young to big problem and then not bad at all. 

The best thing is use your skills to try different things until you come up with the best solution for controlling your thealth condition.  Not being smart about it.  After prescribed drugs did not help I tried OTC drugs on my own and after finding something that aided my prescribed drugs I let my doctor know.  Wish I could tell you the drug I use but not sure if we are allowed to.  Problem is with this health condition it reacts differently for each of us, drugs, foods,  and even day to day.

Traveling:  First I have always tried for an asile seat or emergency exit, I can operate the door.  I just got back from 3 weeks in China so reinforced how very long flights can be.  If mulitple flights are required I make sure I have extra time between flights and use the bathroom.  Sometimes when getting close to landing time I also make an extra stop in the head just in case.  Minimize your fluid intake on the flights, small amounts over the entire trip instead of large amounts at one time.  Remember what drinks are harder on you then others so cut the bads ones out.  Limit liquid intake while eating.  I try to watch what I eat when eating out, for me it is spicy, greasy, or rich foods.  I have even been known to bring along some of my own snacks.  Think in China I realized eating with chop sticks slowed me down so also do not eat as fast at home, this way the body knows quicker and I do not overstuff.

If I even slightly feel the urg when in a strange area I look for a bathroom.  As with my last trip it was harder since one sign would lead to another, then no paper (carry some with you), not always an american style tolet.

Good luck, it will get better.

 Reply posted for yitzyc.

I have to say that I am impressed. Really from what I've seen most of us on this discussion board have pretty severe cases which even though we do not like to admit it, prevent us from lead 100% full lives. That doesn't mean of course we dont get out, well some of us (sorry for you stuck in the house, I've been there) want to fly and do all that stuff but I know its freaky to think about. I just happened to read this cause I'm thinking about a 16 hour flight coming up and well I'm pretty much terrified. First of all, if its like a 3 hour flight there is a chance it won't be a problem but when we are talking aobut a day on a plane it WILL be an issue.

I think I'm most impressed about the diaper thing....I've always thought about it but never had the nerve to actually take the step to do it. I'm a college student and I can't even tell you how many times I'm speed walking to my dorm to try and make it to my bathroom, but you can't walk to fast cause that makes it worse but you can't walk slow either. I've had the mental debate before of how bad would it actually be if I just went right now (could I sneak in w/o being noticed, would I leave a smell trail in the hall, would it be visible, ect) and so far its gotten that far but it has been way too close for comfort (I have a feeling its only a matter of time). I just don't know if I could handle the diaper thing, I guess I've never seen an adult diaper, how bad is it? I'm a girl and normally pants run pretty tight on girls so would I even be able to wear it w/o wearing oversized sweatpants?

I guess it just is amazing to me that someone so new to this has so much figured out about it!  just some creativity in bad situation does wonders. for example when I started loosing weight like nuts cause no food was appitizing and everything ran through me I started drinking a protein shake the grocery store carries for ppl who are building muscle mass- worked wonders! Anyways we are all here. Best of luck!

 Reply posted for yitzyc.

I thought Naltrexone was for patients that were narcotic dependent, but now that I looked it up, it is also used for people with autoimmune diseases. I wonder why my doctor hasn't recomended this drug to me? Does it work for you? I am currently on Humira.