Disney and Crohn's Disease

[aliceinwdw]

Hi everyone! I am trying to plan a trip for January and I am hoping that I can get some advice/suggestions for my planning. My DD8 was recently diagnosed with Crohn's Disease. She was put on medications and the symptoms seem to have improved. There are still times when she will have a flare up. To try and ease her symptoms, I have tried to adjust her diet to avoid the foods that aggravate the condition (ex. fried foods, hot dogs, cold cuts...etc.) My big concern is finding places that will have the foods that she will be able to eat. I have read that different foods affect people different ways, but I was hoping that someone could pass along some of their expericences. I am also going to look into the GAC. Hopefully we wont have to use it, but it's comforting to know it's there just in case. I appreciate any help, we are still feeling overwhelmed and trying to adjust to the new lifestyle.


Barb

 

[Cheshire Figment]

Hi and to disABILITIES!

If you click on where it says "disABILTIES" at the top of this page it will take you to the Index. One of the top items is the "disABILTIES FAQ" which will gives lots of useful information. You will probably find Post #3 and #6 most useful to you.

Once you have looked at them you will probably be able to pinpoint your questions; it is much easier to answer specific quesitons than generalities.

Or, if you want an easier route to the FAQ, click on the link in my signature.

 

[aliceinwdw]

Thank you, the thread in there was very helpful and informative. (Even about some medication options to discuss with the dr at the next visit.) If it's ok, I would still like to hear other posters experiences and maybe places where they ate. Do you think that Disney would consider Crohn's a qualifying reason to have a medically necessary fridge in the Pop Century room? I know that I could always go to Publix and pick up meals/snacks to be handy whereas it may not be as readily available on site or in the food court. Thanks for having a board where we can come to ask such questions!!

Barb

 

[Cheshire Figment]

I would just indicate on the reservation that you have medical items which require refrigeration and remind them again when you check in. What you will get is either a 1.5 or 4.0 cubic foot refrigerator.

 

[SueM in MN]

I would just indicate on the reservation that you have medical items which require refrigeration and remind them again when you check in. What you will get is either a 1.5 or 4.0 cubic foot refrigerator.

If they ask, you can explain that your DD needs to be on a special diet.

I don't know if you have found the wdwinfo part of the DIS site, but here is a page about dining from that part of the site. Just under the yellow box on that page, there is a link to dining menus that might help you.
Also in post #3 of the disABILITIES FAQs thread, there are some links to dining information under the diet information in the listing of specific conditions. Even though people typically think of it mostly for allergies, you may be able to get assistance from them too; especially if there are specific ingredients that cause your DD problems (or, the reverse, specific foods you know are not likely to cause problems that you need to be able to get).

 

[aliceinwdw]

Thank you again for your help in pointing me in the right direction!!


Barb

 

[kydisneyfans]

I was diagnosed with Crohn's at age 20 and have visited Disney no less than a dozen times with no issues at all. The best idea is to keep tabs of what will flare the system up and avoid those foods at all costs. Even though staying away from fried foods, etc is a common rule to go by, Crohn's affects everyone different. I have never had a flare up from a fried food item, but nuts and salads have hospitalized me 3 times. Fruits are iffy, I cannot stomach straight milk or milkshakes.

Menus for all restaurants on site are posted here on the Dis somewhere. Take a look before leaving to get an idea of where you can or cannot eat.

My Crohn's attacks are mainly triggered by stress, at Disney I have no stress. Again, it is different for everyone. Enjoy the parks, be conservative with the touring schedule and food, and everything will be fine.

 

[janetlynn07]

I am sorry to hear that you have a child with Crohn's. My husband has Crohn's and we went to Disney 3 yrs ago and we are going again in Nov. I found that it was much easier grabbing a quick breakfast and eating at a table service for dinner. Unfortunately, sometimes food that you think is safe can cause problems if the wrong seasoning is used or by the way it is prepared. I would call disney and be very specific about what you want at your TS meals. I have a TS planned for every night because I know that my husband can't eat fast food. Even with this, I am still nervous that something will not agree with him. Good luck.

 

[arielsmom3]

I was diagnosed with Crohn's at 13. I can remember my mom carrying around 20 pills in her purse which was what I needed to take just to be able to stand up and walk through the parks. I have been to Disney at least 25 - 30 times since then and I have had to request a GAC a couple of times after I did have surgeries because until the bowel gets retrained you never know when nature will call.

I agree with the above posters because Disney is the least stressed place you can be. I usually feel really good when I am there. You should definitely call Disney Dining. You aren't the first person to Disney with Crohn's and I am sure you won't be the last. Just tell you DD to keep in mind what upsets her system and try to avoid them so she can have the optimal amount of fun and not have to worry too much.

I am a mom of an 8 yo DD and twin 4 yo DD's now and I can see things from both sides. Don't worry about anything and just try to have a great time!

 

[aliceinwdw]

I just want to thank you all again for your replies. We are still adjusting to the condition and everyday is a test/learn experiment. This is our first trip since the diagnosis and the first trip in long long time. So this time I am way out of my element in the planning.
Question (if not too ot)... My daughter is on Asacol 400mg 3x a day. The dr just recently weaned her off a low dose of steroids. He wasn't too happy with the results. Even so, she seems to be in a remission. On our last dr's visit he mentioned that if it flares up again, he will schedule another colonoscopy and would want her to start on remicade infusions. That just sounds so scary to me. I tried to read up on it and it looks like it ony works for awhile and then once the body starts to get used to it, it won't be as effective. Is it really as bad as I imagine? How long do the infusions usually take? Is there anything specific I should ask the dr about (beside the questions posted here, I will ask him them too) Thanks for the ear everyone!

Barb

 

[Kelli Pooh]

Barb,

I understand what you are going through. I was diagnosed with Crohn's in July. I take 2-500mg Pentasa 4x day and pain meds as needed. We are going to Disney in January 2009 also. My husband wanted me to have something positive to look forward to. He knew that my obsessive planning for Disney would distract me. We even booked the Deluxe Dining Plan because he wants me to eat whatever I want while trying to stay well. Hopefully it will help me not feel guilty for leaving half my food on the plate!
What I have been doing is educating myself and planning ahead. I will be taking markers to circle restrooms on all maps( usually I don't even use a map!) Taking a lightwight change of clothes in my bag , a plastic bag to carry clothing if used and some of the wet Charmin wipes just in case. I plan to have days where we sleep later and days we take breaks. I know I will make good use of the park benches and show seating!
We will get a wheelchair if needed but I want to try it without first. Make sure your DD drinks plenty of water because we can dehydrate easily. I am taking the single serve crystal Light drink mixes to add to my bottled water so I am not bored. I am not sure if your DD likes warm drinks but I will also be taking my herbal teas with me so I can relax with a warm drink. When I have the Crohn pain or joint pain I soak in a warm tub-it helps. About the food... I have poured over menus and know most of my meals already. My apps. will be soups alot or maybe crab cakes depending on the place. I plan to eat Salmon at Artist Point, filet at LeCellier & Yachtsman and fish or chicken for the rest of my meals. Most of my sides will be mashed potatoes, rice or mac & cheese with maybe some well cooked veggies for nutrients. I am lactose intolerant so I take Lactaid quite a bit but your DD may be fine with that. Dessert is just going to be insane...I have no idea what will happen but I will only sample things so I don't go overboard! We are avoiding counter sevice because of the DlxP and they are harder for me to find what I need. Try to find some yummy treats she can have so she doesn't feel denied. I believe my biggest trigger is stress so at Disney I should be fine. I hope your daughter has a wonderful time and enjoys her meals! I am still learning too but feel free to ask anything! Maybe we will see ya there.

 

[suz_cute]

I too suffer from IBD and a slew of other GI problems, and always worry about having a bathroom nearby, but I did not encounter any problems on our trip just a couple of weeks ago, but I do have a couple suggestions. As people said before, it will be very important in finding your childs trigger foods (this can take a verrrrry long time) and finding if stressful situations make his/her bowel problems any worse. I know every time I head on vacation, just the slightest change in my routine will set me into a mini flare up, and I plan on being near a toilet for a good while. With this being said, with proper planning and meds this can be alleviated. As I am sure you have found out, having a care free, less regimented vacation will be best. (since you never know how long after a meal, ride, etc you just might be in the bathroom.) My family has learned to take it in stride after 15 years of dealing with IBD. Take solace in knowing that WDW is full of bathrooms, and you are rarely far from the next one. (my family jokes that I have been in them all)

All joking aside, having just returned from WDW after a week the biggest tip for someone with IBD would be...and I know this sounds crazy....but you will NOT be sorry. Bring your own little travel size Cottonelle toilet paper roll (99cents at walmart, and fits in a pocket or purse). The toilet paper in WDW in the parks and in the resorts is that recycled, more earth friendly stuff. IE:Super Rough!! It is NOT in any way shape of form IBD friendly. I ended up coming home and needing a prescription cream to heal the sores that this awful stuff created. (I know... gross, but I think well appreciated by people who have crohn's and ulcerative colitis, since we spend alot more time in the bathroom than the average person!!!)

I hope that your family has a wonderful time in WDW!!! Relax, and have a magical vacation!!

 

[SueM in MN]

I thought of something that might be helpful to you - it's a link to a past thread about bathrooms. The first post in that thread includes a link to a website about bathrooms that a DIS poster made.
If you lose the link, it is also posted in the disABILITIES FAQs thread.