Crohn's sufferes still enjoy the park

Freddie Beach Shelly

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Feb 17, 2006
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Hi everyone! :banana:

My DBF has Crohn's and is worried how he will do at Disney World this November. He's never been before and is pretty much thinking he will not be able to go on any rides because of the fear of even slight josseling.

Unfortunately, he is not taking any medication for the disease (he has in the past, but suffered severe side effects that he didn't like) and of course is worried that he won't be able to go on anything or eat much of anything while he's there. Poor guy!

So, has anybody with Crohn's (yourself or a friend or family member) gone to Disney World? I would love to hear any feedback (good, bad or the ugly).

Thanks fellow-DISers!
 
I have Crohn's.
I go to Disney every year, and have been at least 9 times in the past 8 years with Crohn's. Each person reacts differently to different things, but Crohn's has never been a problem at the World.

My flare ups are caused mainly by stress, being on vacation, that stress is gone. I know what my digestive system can handle and stay away from the foods in the parks that have caused problems in the past.

I would have some type of emergency medication on hand just in case a problem develops, otherwise just go and have fun!!!
 
I've got Crohn's too. Why does he think the rides will bother him? I know Crohn's can affect each person differently but never heard of someone afraid to go on rides. I've found controlling for me means watching what I eat. It's taken years but I now know pretty much what bothers me and how much of what I can eat before trouble.
 
My dh has Crohn's and he did fine in Disney. He is also lactose intolerant and he had no troubles at all with the food there. We made sure we spoke to each waiter before we ordered and he really did OK.
 

I have Crohn's also. I have went to Disney 4 times since 2005 diagnosis. The first time I had just started meds and it was a little rough. I stopped my treatment with the second change of meds and side effects. Now I just watch what I eat while there. When I just have to have something I know may cause trouble my DH GLADLY FINISHES FOR ME:). So go and have fun :thumbsup2
 
I have Crohn's too - I've been to disney 3 times since I was diagnosed - I'm alot like the op - my triggers are stress (mostly) and on vacation I don't seem to stress that much - Rides haven't bothered me at all - of course if I "think" I might need the restroom I definitly go before I get in line or ride the ride - your DBF should be fine - have him talk with his dr about it - there are meds to take for most symptoms - sorry to hear he is not taking his meds - there are alot of different ones out there - I was on 4 different ones before we found the one that worked for me.

:grouphug:
 
My DH has Crohn's too. If your DBF didn't do well on one medication, try other ones! There *are* treatments out there, but it takes time and a sympathetic doctor to find them. If his doctor isn't supportive, FIND ANOTHER DOCTOR.

That said, stress is a big trigger for DH, so we just don't go commando. He also has to be very careful with what he eats, especially on vacation. We poured over all the menus on allears.net to find restaurants (including CS) where he could eat. WDW is actually very good in the food department. DH has to avoid red meat and greasy food, and he could find plenty to eat. That's much better than our local Six Flags, where he can't get any food at all. :mad:

DH went our entire 10-day trip without a flareup! :yay:

Good luck to your DBF.
 
I forgot to mention that we are a family of thrill-seekers, so we all did multiple rides per day on Space Mountain, Splash Mountain, Thunder Mountain, EE, Dinosaur, RnRC, etc., and DH didn't have any problems.
 
Thank you everyone so much for responding. I will be sure to show DBF all of your replies.

Someone had asked why he thinks he can't ride any rides. Even the seatbelt (the lap belt) in our car after a meal is enough to upset his stomach and start the cramps, driving over rough roads, etc. He said if he doesn't eat all day, he'll be fine, but it just breaks my heart to think that's his solution.

Even with his diet, there seems to be no rhyme or reason. He could eat the same thing one day and be fine and eat it the next day and be sick. It's all very frustrating not knowing (as I'm sure you all know). We've only been together for just over 2 years and I've had to learn to accept the fact that there will never be a chance for our dates to be "dinner and a movie" (in that order). It's always do something/go somewhere, then eat and get right home immediately just in case. I love him, but hate the disease. (sorry for the vent :guilty: )

I would really like to see him try different medications too, but the problem is he can't find a doctor in our city. Huge shortage here. He's been on a waiting list for over a year, but he still hasn't received a call yet. When he's sick, he has to go to an "after hours" clinic. It's crazy! Maybe once he has a doctor, something will be done. :guilty:

Would you mind me asking what medications seem to work for all of you that replied...
 
That is tough not being able to find a Dr. That really makes a difference!
My dh almost died from this before they found out what was the cause of his illness.
the Dr. kept making him try to gain weight so his Mom was feeding him milkshakes and all along he had lactose intolerance so it was no wonder he was losing so much weight!!
My dh has been on Prednisone (horrible) Pentasa (worked) and he now is on
mercaptopurine (6-mp) and I think they want him on that forever.
 
Unfortunately I have had to play around with medicines due to high cost and non coverage. My company cut coverage for most Crohn's medicines to free up money to cover "domestic partners".

Again, each medication varies with each individual.

Remicade is big, it caused my heart to slow and made me pass out. That is off the list.
Imuran and something else was given, but it started to affect my kidneys.
My original medication was Pentasa, after trying other things, I am back to Pentasa. I take 1/3 of the dosage suggested when feeling well, if on edge I'll go higher. Prednisone is on hand just in case a major flare up occurs, I know that I have to ween myself off if the problem occurs.
 
I'm currently not on any medication unless I have a flare up then will go on Prednisone until I'm back on track. I've had Crohn's for almost 20 years. The biggest thing that helped me in the beginning was to keep a food journal. Write everything put in your mouth down along with your reaction that day. After a couple weeks look at it and see if you can spot any offending foods. I've found that what bothers one person doesn't bother the next so you really need to find what will work for the individual. Keep using the journal I used mine for over a year. Some foods I'm ok if I have it one day but two days in a row will cause a problem. It's all trial and error. Hope he finds a doctor soon.
 
Thank you everyone so much for responding. I will be sure to show DBF all of your replies.

Someone had asked why he thinks he can't ride any rides. Even the seatbelt (the lap belt) in our car after a meal is enough to upset his stomach and start the cramps, driving over rough roads, etc. He said if he doesn't eat all day, he'll be fine, but it just breaks my heart to think that's his solution.

Even with his diet, there seems to be no rhyme or reason. He could eat the same thing one day and be fine and eat it the next day and be sick. It's all very frustrating not knowing (as I'm sure you all know). We've only been together for just over 2 years and I've had to learn to accept the fact that there will never be a chance for our dates to be "dinner and a movie" (in that order). It's always do something/go somewhere, then eat and get right home immediately just in case. I love him, but hate the disease. (sorry for the vent :guilty: )

I would really like to see him try different medications too, but the problem is he can't find a doctor in our city. Huge shortage here. He's been on a waiting list for over a year, but he still hasn't received a call yet. When he's sick, he has to go to an "after hours" clinic. It's crazy! Maybe once he has a doctor, something will be done. :guilty:

Would you mind me asking what medications seem to work for all of you that replied...


I tried Pentasa - worked for a little bit, then I had surgery to remove the worst part of the crohn's (had fistuals etc). was great for 2 years (no med's:cool1: ), then crohns came back into my life (I was so mad:mad: ), I'm on endocort (to prevent flares, it works as long as I'm not stressed:confused: ), colestid for diariha, previced to reduce acid in my system. - this combo seems to work - most of the time - but if I'm stressed forget it - nothing works I just have to take my pain med and get through it:sad1:

Pressure on my stomach also bothers me, I go with lose pants - no tight jeans etc...The rides didn't bother me, but I didn't go on the "big" ones, I did do splash and I was fine. Most of the tamer rides should be fine for your DBF. I haven't been able to find a specific food that triggers mine, I'm like your DBF - one day it won't bother me the next it kills me - it sucks, but not much I can do about it....Just make sure that he drinks plenty of water and maybe try very bland food - mashed potatos, rice, stuff like that.

All the resteraunts are very good about making something specific for you - just explain that DBF needs a very bland diet due to his disease.

Good Luck:grouphug:
 
You might want to go over to the 'disABILITIES!" Forum, which is about 16th on the forums list. Or maybe one of the moderators will move this thread over there. It may be a better forum than this one.

(This thread has been transferred here from Theme Park Attractions and Strategies.)
 
Thanks again for replying again :grouphug: With any of these drugs did you have any side effects (ie. severe mood swings). I think that is what is scaring my DBF from trying any further medications as he had nasty mood swings :mad: (and he's generally very good natured :angel: ).
 
Thanks for sharing your DBF's challenges. My DH has lived with Crohn's over 20 years. He's had two major surgeries for the disease. He's been on Imuran for a few years, and it's helped A LOT. If he starts having liver/kidney problems (he's monitored with frequent blood tests), he'll probably end up trying Remicade. He's known a couple of folks who used that as an absolute last resort before a total colostomy, and it changed their lives completely for the better. It's not for everyone, though.

I second the notion of keeping a food diary. I wish I could remember the name of the book, but there's a book out there about dietary control of Crohn's that helped him. He's learned to avoid difficult-to-digest foods. For him, that means no corn-on-the-cob/cooked corn (cornmeal is fine), no celery (strings), virtually no raw vegetables (only a little lettuce and tomato, really). Everything must be cooked, and even then he skips or limits some things (broccoli, cauliflower, celery, and corn). He avoids all fruits with seeds (strawberries, raspberries, blackberries), and usually won't eat the skin on fruit (except for limited quantities of grapes and peaches). Red meat is also very difficult for him to digest, to where we eat red meat usually no more than once a month. He also has to be careful not to eat too much fried food at a meal as well. Actually, he's learned to be careful about how much he eats at each sitting. He makes sure he never eats past the "just now full" point. (This is why we don't do the dining plan -- too much food at too few intervals.)

I'm sure this sounds horrible, and it's been difficult to figure out how to cook so we could all still eat as a family, but every day DH goes without a flareup shows that it's worth the effort.

You say that your DBF simply won't eat in order to either keep from having a flareup or postponing it. The last time DH got really bad (before Imuran), that's what he would do. Poor guy lost 30 lbs in 2 months, looked AWFUL, and had absolutely no energy. When he started the Imuran, he also got some sessions with a nutritionist. She said he absolutely should NOT stop eating! What he needed to do was go on a liquid (i.e., easy to digest) diet on "bad" days. She recommended Ensure, specifically the vanilla flavor. She said the chocolate was harder to digest than the vanilla. Be careful, too -- there are multiple varieties of Ensure. Some have extra fiber (read: harder to digest). Go for as "liquidy" as you can find and drink as many as you need on those days. Wow, did that change our lives! That simple advice even made living with flareups so much better. Where a flareup used to confine DH to bed for a couple of days at a time (which is bad when you get a couple a week!), he would switch to Ensure when he felt a flareup coming on and it would work itself out in just a few hours. Hallelujah!

A large part of DH's learning to live with this disease was learning to recognize when a flareup was starting so he could do the liquid diet/de-stress/relax regimen to let it pass quickly.

Sorry this ended up being long. I thought about PM'ing you and realized that DH's experiences might help someone else too.

Best of luck to you and your DBF. FWIW, with as many "show rides" as WDW has, and rides that even pregnant women can do, and all the shows -- I'd still try to talk him into doing Disney. :thumbsup2 Rent an ECV if all the walking starts to cause a flareup. Pack Ensure in a pack to leave in a locker (you can get cups of ice for free). Plan for afternoon rest breaks to have built-in rest time. There's no place like Disney for making you forget the stress of your everyday life!
 
Forgot to mention that DH has seen no real side effects with the Imuran -- certainly not wild mood swings, anyway.
 
Thank you so much guys for replying. :grouphug: Just hearing your stories gives me hope. Before I met my DBF, I didn't know anyone with the disease so I'm learning piece-by-piece now.

I was talking to him about it last night (yet, I haven't had the chance to show him your replies yet) and he said even with a doctor, he may not be able to try different medications simply because Canada's drug guidelines are different than American guidelines. A lot of the drugs you mentioned may not be available here yet. Again, as soon as he gets a doctor, it will definitely be his first topic of discussion to see if any new medications are available that weren't before. (he had a doctor in his previous province, but moved to my province for me :hug: )

One more question please...and I know that every person's diet is different, yet I would still love to hear what and where Crohn's sufferers eat at the Disney parks. We will be doing counter service mainly with maybe one or two table service meals. So what are your favorites that seem to work for you (or your family member with Crohn's)?

The more information, ideas and tips I get, the better I know I will feel. I'm really praying for a positive trip for him so that he can fall in love with Disney, like me, and want to go every year! :cloud9:

Thanks again, so very much appreciated!
 
Hi again,
my food at disney - well at counter service I stick to chicken (grilled)or fish, a hamberger is fine once in a while, but not everyday. Red meat doesn't bother me all the time, so I will try a some if I'm feeling okay. I stay away from salads (really bad for me), and any raw veggies. Nothing high in fiber (that kills me) at a buffet I try to stick with chicken or fish - and nothing spicy - if we get BBQ I ask for the sauce on the side and at some table service places I was able to get a non spicy version of a couple of things. Several of the table service places even had the chef come out and talk with me. Disney is very accomidating when it comes to diet restrictions...

I agree with the OP - don't NOT eat all day - take the ensure and stick to liquids if you have a flare - Good Luck
 
Look on allears.net for menus. We stuck to places where we could get "real food." IOW, no burgers/hot dogs/fried meat/french fries. We don't eat much fried stuff at home, so that's not how we wanted to eat on vacation. So, we usually ate grilled or rotisserie chicken, or grilled fish. The mashed potatoes, green beans, and carrots served with most of these meals were fine. Let's see, at MK we ate at Cosmic Ray's (rotisserie chicken)
and Pinocchio's (some sort of panini -- turkey?). There are lots of choices at Epcot. The food court in the Land pavillion had good rotisserie chicken, grilled fish, and good sandwiches. The Norwegian bakery had sandwiches (turkey or ham). We ate at Marrakesh, so we didn't do the Moroccan CS place, but it also had decent choices (chicken kebabs).

MGM was our hardest park. We were only there around dinner time, and DESPITE THE TIMES LABELED ON THE PARK MAP, ***many*** CS restaurants were closed by 5:30pm and so NOT open for dinner. :mad:
However, we still found someplace across from the entrance to Fantasmic that had some kind of sandwich DH could eat. I can't remember the name of it -- sorry.

When we went in June, Tusker House was still open, so we ate there (rotisserie chicken). Our second choice was Flame Tree BBQ -- they've
got chicken there that's not fried.

At DTD, we ate at Earl of Sandwich, but I'm fairly sure Rainforest Cafe also had appropriate food.

Hope this helps!
 












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