Crohn's Disease-recently diagnosed-trip in 2 weeks

[chefmb]

Does anyone out there have experience in the World with Crohn's disease? I was diagnosed in August, am trying my fourth medication with no success, and am getting frustrated. We go to Disney in 2 weeks. Lately, I've been eating a pretty boring diet--lots of yogurt, applesauce, cheese and crackers, jello cups. Still trying to figure out what I can eat, but I think the medicines have been making my symptoms worse, although they are still quite manageable (thank God!) Just want some ideas on what/where to eat. I expect to be eating grilled chicken sandwiches. Hoping to get some Silk Milk and cereal and eat breakfast in the room. I feel bad for DH who really enjoys eating out. I don't want to put a damper on our trip, but I know I'll have to be rather selective. We've only made 2 ressies--one for Wishes Dessert Party and one for dinner at Cape May (DH is a seafood lover and I really wanted to do this for him
Thanks for any ideas. I'm sure I'll be able to find some stuff, but it never hurts to ask!

 

[DbleTheFun]

Does anyone out there have experience in the World with Crohn's disease? I was diagnosed in August, am trying my fourth medication with no success, and am getting frustrated. We go to Disney in 2 weeks. Lately, I've been eating a pretty boring diet--lots of yogurt, applesauce, cheese and crackers, jello cups. Still trying to figure out what I can eat, but I think the medicines have been making my symptoms worse, although they are still quite manageable (thank God!) Just want some ideas on what/where to eat. I expect to be eating grilled chicken sandwiches. Hoping to get some Silk Milk and cereal and eat breakfast in the room. I feel bad for DH who really enjoys eating out. I don't want to put a damper on our trip, but I know I'll have to be rather selective. We've only made 2 ressies--one for Wishes Dessert Party and one for dinner at Cape May (DH is a seafood lover and I really wanted to do this for him
Thanks for any ideas. I'm sure I'll be able to find some stuff, but it never hurts to ask!

We visited 2 years ago with my mother who has Crohns. There is an extensive health/allergy/dietary restrictions questionnaire i got from disney dining (emailed it to me) that she filled out and faxed back. It was linked to every reservation we made.

We had a full week of TS meals, from Le Cellier to Chef Mickeys. EVERY time without exception, the chef came out and talked to my mom about what she could order/choose from buffet, and what she had to stay clear of. Each chef also openly offered to make her anything else if nothing peeked her interest from the selections available. not only was it a relief that they made the dining process so easy... But they made my mom feel like a queen- not a nuisance. She admitted that although she eats out a lot, and is used to some pretty amazing restaurants- that the week of dining at WDW was some of the best since being diagnosed.

I would suggest contacting Disney dining and asking them for them for the forms... And then go through them with a health care professional if you are still not sure what things you need to stay clear of.

Im sure you will have a magical time.. And your DH will be jealous that you are getting special "treats and chef creations that not everyone gets!

 

[bentopher]

Oh different but related topic....

Do some thorough reading on your own about food combinations...

I suffer from Ulcerative Colitis and IBS, as does my mom (and she has a bunch of other issues as well). Food combining isn't difficult, make a lot of sense and really makes it easier not only for you to eat, but will help in aiding the symptoms of the disease. It's worth looking into and doesn't cost you any money at all to do it. If you want to chat more or want more info please PM me. We are both feeling so much better, and never of us take any medications anymore.

Best of luck
Amy

 

[Cheshire Figment]

I would suggest going to the disABILITIES Forum and look at Post #3 of the disABILITIES FAQs. There is a large section in that post dealing with special dietary needs, as well as many related links. You can get directly to the disABILITIES FAQs by following the link in my signature.

This is a very common topic of discussion in the disABILITIES Forum.

 

[chefmb]

Thanks all. I will look into the things you've mentioned. I'll definitely make a note of it on my TS reservation. Going over to the disabilities board now.

 

[CynBeth]

My husband has had Crohn's since he was was 8 or 9 and had several surgeries so most of his colon is gone. He takes certain meds which his docs have played around with over the years to find which work best. He does have flare-ups every now and then and some days goes to the rest room more than other days but pretty much leads a normal life. He discovered that he is allergic to dairy and certain spices set things off such as black pepper. He does great eating at Disney. We note on any TS ADR about his issues and usually the server has a chef come out right away. At CS he looks at books or talks to a manager. On our last trip we ate at Trail's End Buffet for Thanksgiving Dinner and a chef walked the buffet with him and prepared a plain baked potato and veggies for him and brought him non dairy ice cream and a non dairy cookie for his dessert.
We also never feel like a nuisance at all either, the cast members in the restaurants are wonderful! Other than at our house we feel safest eating at Disney. Good luck and if you want to talk feel free to PM me as well.

 

[chefmb]

Thanks, CynBeth. I appreciate it. I am still learning what I can and can't eat. It does get frustrating because I can seem to be fine with something one day, but a different day it might create problems. My symptoms were much improved before a diagnosis while taking probiotics at the advice of the dr. Then I got diagnosed and the doctor wanted to find a med that will decrease the inflammation. Seems like all the meds have just made things worse or had other side affects. My symptoms overall are pretty manageable unless I'm having a bad flare up, and last spring was the first time I couldn't get things under control, which is what made me go to the doctor for help. Anyway, I'm learning! Just ordered some books from Amazon that refer to things I read about on the Disboards last night. One thing I just need to do is stop stressing about stuff! Heck, I'm going to Disney in 12 days!! Happy thoughts about my happy place. Thanks again!

 

[ohiotinkfan]

My DS (18) was diagnosed with Ulcerative Colitis in March of this year (great way to have spend part of your senior year). He is very blessed because his medication is working and does well most of the time. He takes the chemo pill (6MP) everyday and a series a many vitamins and a medical grade probiotic called VSL#3. Have you been to the site CCFA.org? It is a great site and based on research.
For my DS senior trip (in May) I took him and a friend plus DD to Universal. He did all right but did have some issues with some of the food and personal stress levels associated with traveling and worrying about "what if" that goes along with Crohns and UC. Spices I don't usually cook with at home bother him so he tries to stay away from new foods while on vacation.
We are all going to Disney for Thanksgiving (DH, DS,DD, and me) and he is much more relaxed about going now. Hopefully, he will be less stressed too. We aren't doing the dining plan or any ADR's but will rather just go with the flow. He can get food when he wants it and eat what he thinks will be kind to his stomach. If he wants Crystal Palace or other table service places we will just walk up and see if anything is open.
Just try to not stress out (easier said than done I realize) and just listen to your body. I am sure you will be fine and have a great time.

 

[CraigInPA]

I think the biggest problem my SIL with Crohns had at Disney was that they don't have a way to print a customized map that includes the restroom locations. Beyond that, she had no problem finding something to eat at every TS and QS location the family chose during the last few trips.

 

[CynBeth]

Craig,

Where are you in PA? I am in MD.

Ohio,

We were in Disney for Thanksgiving Week last year and it was our best trip to Disney so far! It was our first time going during the holiday season. Have an amazing and magical time!

 

[ohiotinkfan]

Thanks, we can't wait!!! I am so excited to see all the Christmas decorations. We will be staying at WL and I know that will be amazing!!!!!

 

[CynBeth]

We are staying at WL as part of a split stay in Dec 2013. I visited our last trip and can't wait to stay there.

 

[michellejed]

You should be able to find things to eat at any TS or CS you go to. The trick is getting your meds in a happy place and you will be able to eat more and more.

When I have flare ups I resort back to old fashion chicken noodle soup and peanut butter on a spoon!

Some can't tolerate gluten or dairy at first but you will find what works for you. Some times just eating small amounts all day long helps too.

Please remember that Crohns has a bad habit of not letting you absorb vitamins and nutrients like before so take extra.

I now have to take 80,000 units of vit D every week just to be close to good.

I hope you can go and just have a good time, food is every place and so are bathrooms!

 

[ZoZo]

I'd recommend talking to your GI doctor before you go. Let your doc know you're traveling, and get some recommendations about what to do.

 

[CynBeth]

How was everyone's Thanksgiving?

 

[ohiotinkfan]

Just back last night from our trip. We had a great time and DS did fine with his UC. We just relaxed and just enjoyed the wonderful Christmas decorations. DS (18) and DD (16) walked in at Chef Mickey's on Saturday and got table with only a 30 minute wait! DH and myself went to Trails's End and only waited about 5 minutes. DS didn't have any problem with the food at Chef Mickey's. He mainly did quick service the other times, but made wise choices and avoided things he thought may cause a flare. He does need to be more selective but he was fine. Stress levels were good too.

 

[chefmb]

Just back last night from our trip. We had a great time and DS did fine with his UC. We just relaxed and just enjoyed the wonderful Christmas decorations.


So glad you had a great trip! I leave Thursday. I hope being away from it all will be a great healer for me! The stress level with everying going on over the last two weeks has not helped my symptoms, and I'm still trying to find the right meds. I'm so looking forward to being in my happy place!!

 

[CynBeth]

Have a wonderful trip! I can't wait to hear all about it when you get back.

 

[CynBeth]

How were your trips?

 

[michelleiada]

Does anyone out there have experience in the World with Crohn's disease? I was diagnosed in August, am trying my fourth medication with no success, and am getting frustrated. We go to Disney in 2 weeks. Lately, I've been eating a pretty boring diet--lots of yogurt, applesauce, cheese and crackers, jello cups. Still trying to figure out what I can eat, but I think the medicines have been making my symptoms worse, although they are still quite manageable (thank God!) Just want some ideas on what/where to eat. I expect to be eating grilled chicken sandwiches. Hoping to get some Silk Milk and cereal and eat breakfast in the room. I feel bad for DH who really enjoys eating out. I don't want to put a damper on our trip, but I know I'll have to be rather selective. We've only made 2 ressies--one for Wishes Dessert Party and one for dinner at Cape May (DH is a seafood lover and I really wanted to do this for him
Thanks for any ideas. I'm sure I'll be able to find some stuff, but it never hurts to ask!

Hi! So glad I saw your post. My daughter was diagnosed with Crohns at age 11. She was on many meds and continued to get sicker! She is now 19 and symptom free med free! Please go to Amazon and purchase the book "Breaking the Vicious Cycle" by Elaine Gotshall. Read the reviews posted by others with IBD. It will change your life! Don't let the Doctors tell you diet doesn't matter with this disease...IT DOES! I am a nurse and very experienced with this diet and have seen it work for many who suffer with this disease! Feel free to PM me or e mail me. I would be happy to answer any questions!