Chron's Disease

[flowersfinest]

My 10 yr old son has recently been diagnoised whith Chron's disease and spent 10 days in the hospital. He has been looking so forward to this trip due to all of the recent medical issues. However he is very concerened that he will be waiting in a long line and have the urgent need to go to the restroom. When I say urgent I mean must go NOW or will have accident with a bowel moement. There is no knowing when these urges will happen. He said he doesn't want to get out of line after being there for 10, 30 or 60 mins in a line then have to go back to the end of the line again because he had to leave it. Can anyone make a suggestion regarding line waits and if it is possible to get back in a spot close to where we were originally if this happens? Thanks fopr your help. We are going June 23 so any info soon would be greatly appreciated.

 

[mom23kids]

My ds also has Crohn's. He was diagnosed at the age of 7 and just turned 13 a few months ago. We aren't going till Nov so I don't have an answer for you. Sorry to hear he was hospitialized. This disease is awful and I am sorry for all who suffer from it.

 

[Wishes Count]

My 10 yr old son has recently been diagnoised whith Chron's disease and spent 10 days in the hospital. He has been looking so forward to this trip due to all of the recent medical issues. However he is very concerened that he will be waiting in a long line and have the urgent need to go to the restroom. When I say urgent I mean must go NOW or will have accident with a bowel moement. There is no knowing when these urges will happen. He said he doesn't want to get out of line after being there for 10, 30 or 60 mins in a line then have to go back to the end of the line again because he had to leave it. Can anyone make a suggestion regarding line waits and if it is possible to get back in a spot close to where we were originally if this happens? Thanks fopr your help. We are going June 23 so any info soon would be greatly appreciated.

Hi! I think I can be of some assistance. I'm 21 and I have been diagnosed with Crohn's Disease since I was 13. I do not know how severe your son's case is but mine is very severe and I have not been in remission for over 3 years.

First I would suggest going to Guest Relations and inquiring about a Guest Assistance Card. The Cast Member will ask what type of assistance you need. I explained that I have Crohn's Disease and explained the urgent need to leave lines at times and expressed my concerns about the rides with longer wait times. I also have a lot of problems with fatigue so standing and walking for long periods of time are really hard for me.

Now I do not know how your son is doing but you mentioned that he had been hospitalized recently. I might suggest that you get a wheel chair for him for the trip. I know from my experience that having a flare-up really takes a lot out of you. It's sort of like your body is fighting against itself constantly. There have been several times that we have gone to WDW and I just could not keep up.

I would also suggest looking at the Maps ahead of time and finding out where all the restrooms are. I have always found that my symptoms actually increase when I start to panic about not knowing where a restroom is or if there is not one available. Bring a change of underwear and shorts for him as well, its better to be safe than sorry.

Most importantly (for everyone in your party as well!) is to stay hydrated, the sun and the heat will really take a lot out of you, it has been in the high 90's all this week. And if your son is having a lot of diarrhea or vomiting that will only make dehydration more likely.

Since your son was recently diagnosed he might not know if certain foods bother him or not, but if you know that there is something he can eat that won't bother him, or he can keep down (Like I cannot eat popcorn, and when I'm not feeling well I stay away from greasy or spicy food.) You can ask a Cast Member where you can find certain food items. Like if he wants a sandwich instead of a cheeseburger, they can point you in the right direction by looking it up on their "Tell-a-Cast"

I tried to give you some of my best tips for dealing with Crohn's at WDW, If you have any other questions I will be more than happy to answer. Like I said I have been diagnosed for about 8 years now, and we have made yearly trips to WDW, and I am also a Cast Member here, so I will do my best to answer any questions you have.

 

[M5ward]

Make sure he has a hat (preferably wide brimmed) to protect him from the sun. Many of the Crohn's medications can make you sensitive to the sun (such as Asacol, Imuran, corticosteroids, etc.)

 

[dclfun]

Renting a wheelchair would be my suggestion. I have a friend with Crohn's and she says that being active makes her bowels more active also, and that if she's sitting quietly she has less urge to go. Of course I don't know if your son would react the same way, but at least he'll be able to spare his energy. It will be very hot when you visit, so know that he can visit First Aid to lie down on a cot in the a/c and rest a bit. Definitely stay hydrated. Hopefully he can eat enough to maintain his nutrition- I think it's harder to eat when you're overheated, let alone with him having challenges that affect his digestion. I'm so sorry to hear he's been hospitalized and hope he starts feeling better before your trip.---Kathy

 

[ToddyLu]

Here is a great website that you both may find comforting. Cass has taken a lot of time on this and while it doesnt answer specific questions that he may have, perhaps he will like the fact that there are so many available. The maps would be great and he could look at them before going.


http://www.cassworld.ca/bathrooms.htm

What about an incontinence brief? That he could wear while only in the parks, just in case he has the urge during a ride? I would find some opaque colorful baggies to put in his pocket, that way if he has an emergency or needs to change he can place the used brief in a non see through bag then throw it in the trash with no one the wiser. It feels like there are restrooms every 10 feet in WDW. I do not think it will be a problem at all to leave the line then come back--I cannot imagine anyone saying something to a child that is with Mom and Dad. But some people are just silly. There are the break points along the que lines that have CMs occasionally if he has to break a line and needs to come back surely they would assist him. Definitely use your FPs.

 

[ToddyLu]

I see this is your first post. Is this your first trip to WDW. Are you familar with FPs (Fast Pass)?

 

[megarella]

This thread on the ibs board about Disney might be of help to you:
http://www.ibsgroup.org/forums/topic/54062-disney-world/

Also, I've read somewhere before (don't remember where) if you (and your son) get to the front of the line, and he realizes that he needs to use the bathroom then, just alert the nearest Cast Member. They'll show you how to get to the nearest restroom the quickest and will (more often than not) allow you to come back in the way you exited so that you don't have to wait in the line again. The Cast Members are used to this sort of thing, particularly since it's a place popular with younger kids who may not have to go to the bathroom before getting in line but discover once they get to the actual ride that they have to go.

I agree with the idea for the adult diapers/disposable underpants, as it will at least give him some extra security.

Have a fun trip

 

[SueM in MN]

This thread on the ibs board about Disney might be of help to you:
http://www.ibsgroup.org/forums/topic/54062-disney-world/

Also, I've read somewhere before (don't remember where) if you (and your son) get to the front of the line, and he realizes that he needs to use the bathroom then, just alert the nearest Cast Member. They'll show you how to get to the nearest restroom the quickest and will (more often than not) allow you to come back in the way you exited so that you don't have to wait in the line again. The Cast Members are used to this sort of thing, particularly since it's a place popular with younger kids who may not have to go to the bathroom before getting in line but discover once they get to the actual ride that they have to go.

I agree with the idea for the adult diapers/disposable underpants, as it will at least give him some extra security.

Have a fun trip

People have posted it on various threads on this board.

Along with Fastpasses, I'd recommend using a touring plan or one of the touring/ time apps for smartphones.
Those things will help you to be in the least busy part of the least busy park, so your waits will be shorter..

Also, some attractions are quite long with no way out once it has begun.
For example, ellen' Energy Adventure is about 45 minutes long. There is a link about ride lengths in post 3 of the disABILITIES FAQs thread that might be helpful to you.
You can find that thread near the top of this board or follow the link in my signature.

 

[bitohoney]

I'd make a phone call to Disney before you go.
I have ulcerative colitis and got a flare up 2 weeks before a trip and read somewhere that if you get a note from the doc you may be able to get a pass to go to the front of the line.

 

[Cheshire Figment]

I'd make a phone call to Disney before you go.
I have ulcerative colitis and got a flare up 2 weeks before a trip and read somewhere that if you get a note from the doc you may be able to get a pass to go to the front of the line.

Not correct on multiple levels.

First, when you call Disney, unless you actually know a specific number, you are getting a call center and they will identify themselves as Guest Services. They are not in a Park.

Second, the people in Guest Relations Offices tend to ignore doctor's notes unless they have specific needs. And bypassing lines is not considered a medical need.

The only time a Guest Assistance Card which allows FOTL access is given is if it relates to a child on a Wish Trip.

 

[SueM in MN]

I'd make a phone call to Disney before you go.
I have ulcerative colitis and got a flare up 2 weeks before a trip and read somewhere that if you get a note from the doc you may be able to get a pass to go to the front of the line.

Agreeing with Cheshire Figment.

People HAVE called the Disney phone number and been told just that.
But when they actually got to the park and spoke to Guest Relations, they were told pretty much what Cheshire Figment posted ( he works at WDW).

Other posters who have Crohns or related situations have posted in the past that what helped them the most was using Fastpass, tour plans and phone apps that showed wait times and telling the CM at the attraction that they had a disability related reason to leave.
If it's an attraction where you have Fastpasses, guests can leave the line any time before their Fastpasses have been collected - no questions asked and no reason needed to leave the line. When coming back, you just use your same Fastpasses to get back into the Fastpass line.

For rides without Fastpass or where you ate past the point of turning in the Fastpass, just explain to the first CM you see that you need to leave because of a disability related reason. They will tell you how to return.