Introduction:
My name is Sabine, mother of 2 wonderful boys, 5 and 16 years old, full-time employee, just returned to the USA from FANTASTIC but challenging trip in Europe.
Some more about me:
exercise, reading, movie theater
Symptoms:
urgency, blood, mucus, fatigue
Wanna Be World Traveler – With Colitis of Course
Hi UC friends,
I had been diagnosed with UC in 2008, I previously posted here (“When Do You Go to the Hospital? March, 2012″) about the original frustrating ‘journey’ – I am just living my life as a mother of 2 wonderful boys, 5 and 16 years old, having a full time paper/keyboard pusher job, and trying to stay active with gym membership and trying to spend more time on myself and trying to enjoy life.
As you all know that enjoyment can sometimes be hampered by having to deal with our UC challenges, for me it is always the terrible urgency, that can come at any time, but mainly in the mornings or in stressful situations (traffic, not knowing where a bathroom is, meetings…), of course there are also the accompanying friends of blood loss, mucus, fatigue and pain – but with those I can deal with without embarrassing myself.
We just returned from our European trip – including a visit to Italy and a cruise in the Mediterranean Sea for 10 days – I did breakdown and bought grown-up diapers……
As soon as we landed in Italy and we got our suitcases (and of course I make several stops in the airport bathroom), we get picked up by a non-english speaking driver to take us to our Hotel and on the drive from the airport to the hotel the URGENCY starts, Italy and lots of other old European cities don’t just have no public bathrooms, they don’t have any hiding spots when the urgency strikes….There I was hyperventilating in the van, not prepared to utilize my diaper…. one lucky thing was, the driver was able to make a right-turn and find me a little weedy area where I was able to hide myself… but what would I have done if we were stuck at a red-light? I guess use the diaper, which I don’t think would work too well for the # 2…….
The next day I stayed in the hotel and let my family do some sight-seeing without me so that we did not have to worry about bathroom breaks.
Once the cruise started, I woke up every morning at 5 am and got my system ‘jump-started’ with lots of black coffee and exercise and several potty visits, so that I was ready by 7.45 am to leave the ship, hopefully without any additional problems.
BUT I could never trust my body so I decided the diapers were a wise choice for the excursions. I did have to jump the bathroom lines at some of the hotels/museums a few time but thankfully NEVER had to use the diaper, so I am thankful.
I am so angry and frustrated at this disease, at my body’s inability to control the urgency; it is so demeaning to have to constantly think about my BUTTPROBLEM, possibly embarrassing my family or myself.
I had to make different wardrobe choices, mainly long dresses in case a ‘diaper change’ was needed, I mention that even though it sounds vain, because I worked hard in being able to wear cute shorts again after being pretty overweight and now having reduced my size by 4 dress sizes from a 14 to an 8!!!
Now that we are back in the US I am exhausted. How do other members in the community deal with this????
I want to do some more great vacations and need to see how other members deal with this.
Thanks so much
Sabine
Medications:
Currently taking: Apriso, Canasa, Align
written by Sabine
submitted in the colitis venting area
43 year female, previously had a super healthy stomach!
Oh Sabine…what a trip! I cannot even imagine travelling when I was in a flare. Good on you, I say!
You are not missing out on life, at least, like I did for 15 years. Yes, your trip would have been ‘better’ had you not had UC, but what the heck…you did it anyways! You should be very proud of yourself. You are a truly strong woman. You experienced Italy!! Screw you, UC!!
I can offer N advice, as I have never had the guts to travel anywhere with UC, however, YOU are fabulous! Don’t let UC stop you, as so many of us have and do!! I should take my own advice…lol.
Thank you for your post. At least I can live vicariously through you…
:)
Hi Sabine and thanks for sharing your story. My wife and I continue to travel and have fun going to concerts and different places just to get away from the grind. I tell her that this condition is not going to stop me from living. If it does I am having my colon removed. Unfortunately that means planning so I do wear adult diapers, it’s better than going in my underwear and gives a sense of security. I have had accidents in crowded areas and thank the goddess the diaper held. They are quite amazing these days! I carry an emergency kit also. This includes 2 spare diapers, 4 paper towels (sometimes I could use a couple more), and a bag to dispose of the soiled diaper. So far this has been a trip saver. I have had accidents that would have stopped us from enjoying our planned adventure if I hadn’t been prepared. I have gotten to be a pro at cleaning up and I do not let it get me down. It sucks to have to live like this but I refuse to stop living. It’s my way of fighting back and I will win!
Don
Hi Sabine,m proud of u:-)travelling during flare up.but is coffee ok to have it triggers the symptom more in my case,d days i eat right i cn control my urgency more. Yes UC should nvr let us down i used to wear daiper n play busket ball when i was 15 during my flareup,thn when its convineint i would run to d toilet to soil n clean myself.its been a long journey now my GI hv advice me to remove my colon,m waiting for the surgeon n hospital he suggest for me here in india nobody can keep thr timing wt our population,ihope for ds end of july but now iguess it vl b first week august.one surgeon hv told al d consequence dat il continue to poo eight times but ithink it vl b better thn having to run,d gas,d pain,d blood its worth anywaz we hv to pee 6/7 times so its convineint i see it this way.n dont hv to worry whn it vl relapse or atleast stop steriod wt its side effects.thank u when i read story like your s it encourage me n il travel no matter wat n figure my way out:-)
Hi team,
thanks for your feedback. Currently planning my next trip to Mexico :-)
Sabine
Who-hoo!!
You go girl!
:)
Hi Sabin
This might sound a bit out there for u but i just came back from a trip from Europe and know what you are talking about, but thank god ive found the cure to this desease and that is Canabis. I find that if i smoke half a joint in the morning i never get the urge to go to toilet and if i do its at least controllable. Ive been virtually desease free for the past 8 yrs thanks to pot.
Please youtube search LEAF curing desease with jucing cannabis for furthur details. Stay strong and God bless
Hi Sabine,
This has also been a struggle for me, as I too love to travel. I was actually diagnosed with UC 4 weeks before my first major international trip to South Africa, four years ago. Thankfully, I was asymptomatic for that trip, but every other subsequent trip I’ve been on has been struggling in one way or another. The biggest mistake I ever made, though, was traveling in the middle of a full-blown flare. After neglecting my body’s needs for several months, I stupidly decided to take a trip to Montreal with some friends (including some heavy drinking…not smart), and I didn’t enjoy it at all (had lots of BMs and a couple of accidents). After that trip, I decided never to travel in such a state ever again.
Since that trip, I’ve gone to Ecuador and the Galapagos Islands, England, Ireland, the Netherlands, and Israel. And although I’ve been worried about flaring up abroad during these trips (plus I get especially neurotic before the trip, always preparing for the worst), I’ve always made sure to take care of a flare before I leave. I always bring extra pred with me (though I despise taking it, it’s a security blanket), just in case I need it. And I’m usually very careful with what I eat abroad (interestingly, I have found that a lot of my symptoms are worse in the US than in other countries abroad – I wonder if anyone else has ever experienced this?). And I’ve found it’s very important to simply relax and try not to think about it, though it gets hard not to at times. The disease can take over our lives, and it’s not so easy to step back and enjoy the world around us.
Anyway, I think it’s great that you continue to travel even though you have UC. While it’s easier for some than others (depending on your severity and how you respond to meds), I think it’s better to try to fight for the life we deserve, rather than settle for one made a little more challenging by UC.
Galapagos Island Traveler Josh!!
(just wanted to say I’m super jealous and you’re my hero amigo!!!) where ya to next!!
keep up the traveling, and best of luck to you in the future, and everyone else with UC reading this post!
–Adam
Josh, just wanted to say that I also notice my symptoms seem to chill a bit when I travel on holiday. I don’t think it’s necessarily about food for me though as it is about getting away from the stress of everyday life. (I don’t eat the standard American diet.) But if you’re anywhere where food is strictly made from fresh ingredients, it’s going to help, I’m sure. I have been flaring for almost three years now and have traveled to a number of exotic locations during that time. The plane trip is always the most stressful part of it for me. But other than that, I try to eat smart, not push myself, and be prepared for emergencies. And I always seem to go better than I expect. I think Adam wrote about this in his book too. He went on a cruise during a flare if I remember correctly. I think a cruise is a great idea as you’re in a pretty contained space and always have a bathroom nearby, but still getting away!
Hv a fabulous time:-)