Colitis at Disney....... Help!!!!!

[MommyJack]

I've been in remission from ulceritive colitis for three years and and now three weeks before our trip I'm starting to flare again. I've increased my meds (asacol) and that seems to be working, but I'm afraid I will not be able to get it under control in such a short time.

Any advise from others who have traveled with colitis would be appreciated.

 

[snorris49]

I'm sorry you are having a flare with your UC. NO fun! I have Crohn's disease so I can definitely understand what you are going through. I have had flare up issues while traveling (seems to kick up the crohn's disturbances), so it seems like no matter where I go (even Disney) I still have a slight issue. Sometimes, I just plain eat the wrong things (love Mama Melrose but I ate gluten free pasta there in a very large quantity--which I don't normally do. And I was violently ill the next day--so bad I couldn't even go out into the parks. I think it was a combination of crohn's and food allergies.). As far as the bathroom situation goes. (sorry for all if this is a little TMI) I always map out where the nearest ones are and also try to find quiet places too. It can be frustrating and embarrassing, but necessary when you don't feel good. I also try to avoid foods that might disturb me (I try to get rice or naturally pureed foods--like mashed potatoes) and easy to digest meats (I don't eat steaks at all). Soups are also nice. I've learned that some foods are too much (like I can only have 1 or 2 tapioca rolls or a salad once or twice) otherwise I get a little too rambunctious and then I don't feel so good. I always bring extra meds and remember to take it easy and make time to rest during the day, so as not to stress myself out to much physically and inadvertently go into a flare. Out of anywhere I travel, WDW is the least stressful for me, so my Crohn's usually is very minimal. I actually went 3 months after being hospitalized for it the first time and was OK...just had to remind myself to be very careful with the food consumption (at that time I had a minireflare and was not feeling to great). My doc said as long as I took it easy and rested and tried not to stress out I'd be ok.

I'd definitely look at the menus prior to your trip to get an idea of what you want to eat (or alternatives) and check on the maps for restrooms, etc.

Hope that helps a bit...and I hope you feel better soon!

 

[bitohoney]

OMG I know the feeling! I have UC and had a flare up 2 weeks before my April 2009 trip. Heck I was thinking of wearing Depends just in case, but decided against that. The doc gave me Asacol right before my trip and everything went downhill from there. Asacol made my symptoms worse, so the 1st 3 days of my trip I had a fever, pain, extreme fatigue and the other nasty symptoms of UC. I had to leave the parks early. Then I stopped the Asacol and started to feel better immediately. I made sure I knew where the bathrooms were and went to the last stall when I did so I wouldn't torture the others in there.
It was hard to get up in the morning and get going to the parks but I did it. I had to take frequent breaks on a bench from time to time because of fatigue and pain. I know it says no caffeine during a flare, but I found that the only thing that helped me along was Coke, because of caffeine.
Hope you feel better before you go!

 

[MommyJack]

Thanks for the suggestions. I've got a little over two weeks to go. So far the meds seem to be helping.

 

[SDSorority]

My best friend has UC (he's had his entire large (or small?) intestine removed). He knew what he could and couldn't/shouldn't eat, knew where ALL of the bathrooms were, and had a great time. He has gone to Disney twice in the last year and I never heard a complaint when he got back from him or his wife about flare ups.

 

[Tonya2426]

I've been to the Parks during a flare up (thankfully I am currently in a Imuran induced remission - knock on wood) and it is tough.

One of the things that helped me the most was knowing where the next bathroom was and having a patient Mom who didn't mind waiting for me on a bench while I visited all of the bathrooms of the World. If the people you are with become frustrated with waiting on you all the time you start to feel guilty for messing up their trip. So maybe have a talk with your traveling party to explain things at the start of your trip if they aren't familiar with UC.

I also visited the bathroom before we got in a line even if I didn't really have to go. There is nothing worse than being "trapped" in a line or an attraction and needing to go. Just the stress of thinking about it makes things worse. Let's just say that during that trip, riding Haunted Mansion required a lot of deep breaths and prayer and it wasn't because the happy haunts were scary.

I always have lots of Imodium on hand, even during my remission times - if that is what your doctor suggests you take during times of need. You might also consider asking your doctor for some (dreaded) Prednisone just in case things get out of control while you are gone. I hate taking the stuff but in a pinch a few days of a little Vitamin P could make the difference between leaving the hotel room or not.

My mom and I laugh that I have seen the inside of every ladies room in Walt Disney World. So when we were on our Adventures by Disney trip in April and found some pins of the various bathroom signs in the Imagineering store I just had to get them. They make me laugh and remind me that even if I am in the bathroom at Disney World with UC, I am still at Disney World which is better than my bathroom at home.

 

[cm8]

I've been to the Parks during a flare up (thankfully I am currently in a Imuran induced remission - knock on wood) and it is tough.

One of the things that helped me the most was knowing where the next bathroom was and having a patient Mom who didn't mind waiting for me on a bench while I visited all of the bathrooms of the World. If the people you are with become frustrated with waiting on you all the time you start to feel guilty for messing up their trip. So maybe have a talk with your traveling party to explain things at the start of your trip if they aren't familiar with UC.

I also visited the bathroom before we got in a line even if I didn't really have to go. There is nothing worse than being "trapped" in a line or an attraction and needing to go. Just the stress of thinking about it makes things worse. Let's just say that during that trip, riding Haunted Mansion required a lot of deep breaths and prayer and it wasn't because the happy haunts were scary.

I always have lots of Imodium on hand, even during my remission times - if that is what your doctor suggests you take during times of need. You might also consider asking your doctor for some (dreaded) Prednisone just in case things get out of control while you are gone. I hate taking the stuff but in a pinch a few days of a little Vitamin P could make the difference between leaving the hotel room or not.

My mom and I laugh that I have seen the inside of every ladies room in Walt Disney World. So when we were on our Adventures by Disney trip in April and found some pins of the various bathroom signs in the Imagineering store I just had to get them. They make me laugh and remind me that even if I am in the bathroom at Disney World with UC, I am still at Disney World which is better than my bathroom at home.

,

 

[DisneyFreakz]

I have 2 siblings With UC and 1 with Crohns. In addition to the obvious meds, they do the following as soon as we arrive:
They get the park map at the counter of the hotel and mark every bathroom ahead of time.
They look at the menus of every restaurant in the particular park we are going to be at that day. They each have different foods that set them off and they plan out accordingly. They also bring their own snacks for those in-between moments.

Hope this helps