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Old 11-15-2012, 06:27 PM   #1
chefmb
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Crohn's Disease-recently diagnosed-trip in 2 weeks

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!
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Old 11-15-2012, 07:00 PM   #2
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Quote:
Originally Posted by 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!
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!
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Old 11-15-2012, 10:22 PM   #3
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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
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Old 11-16-2012, 07:28 AM   #4
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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.
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Old 11-16-2012, 07:59 PM   #5
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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.
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Old 11-17-2012, 05:42 PM   #6
CynBeth
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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.
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Old 12-09-2012, 09:46 AM   #7
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Quote:
Originally Posted by 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!
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!
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Old 12-09-2012, 07:40 PM   #8
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Back from my happy place!

Thanks for the inquiries. The trip was wonderful! The weather was really perfect--not a drop of rain. Eating was a little challenging because my symptoms just haven't been great. The Touring Plan app to search menus was a great help during the trip! One day, all I wanted was chicken noodle soup. I was amazed at how hard it was to find! I did finally find it at 50's Prime Time since we were at DHS that day. Our server was great--I felt kind of bad ordering just the soup and I asked if it was possible to get some bread with it. Our server, Cousin Bruce ( I think) told me he could probably run down to the Piggly Wiggly and get some for me(50's PT is a fun place to eat if you haven't tried it). I really appreciated it!
michelleiada--I tried ordering it a few weeks ago but just received notice that it is no longer available on Amazon. I haven't had a chance to look elsewhere. I did get the cookbook for the SCD and another book Living with Crohn's and Colitis I go to the doc Wednesday and want to talk about getting completely off the Entocort ASAP (I just tapered to 1 pill) and going with the diet for awhile. This just seems to make sense to me since the only thing that has helped me so far is the probiotic. I may PM you when I have a little more time to really look into the diet! I appreciate the offer
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Old 12-09-2012, 08:04 PM   #9
michelleiada
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Quote:
Originally Posted by chefmb
Thanks for the inquiries. The trip was wonderful! The weather was really perfect--not a drop of rain. Eating was a little challenging because my symptoms just haven't been great. The Touring Plan app to search menus was a great help during the trip! One day, all I wanted was chicken noodle soup. I was amazed at how hard it was to find! I did finally find it at 50's Prime Time since we were at DHS that day. Our server was great--I felt kind of bad ordering just the soup and I asked if it was possible to get some bread with it. Our server, Cousin Bruce ( I think) told me he could probably run down to the Piggly Wiggly and get some for me(50's PT is a fun place to eat if you haven't tried it). I really appreciated it!
michelleiada--I tried ordering it a few weeks ago but just received notice that it is no longer available on Amazon. I haven't had a chance to look elsewhere. I did get the cookbook for the SCD and another book Living with Crohn's and Colitis I go to the doc Wednesday and want to talk about getting completely off the Entocort ASAP (I just tapered to 1 pill) and going with the diet for awhile. This just seems to make sense to me since the only thing that has helped me so far is the probiotic. I may PM you when I have a little more time to really look into the diet! I appreciate the offer
Amazon will be carrying it again. I believe it is because they are releasing a new edition the end of January. You can preorder at Barnes and Noble. It is truly the best thing to ever happen to us. It changed my daughters life! Please feel free to PM me anytime and I can give you the details of my daughters story and complete recovery!
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Old 12-10-2012, 06:50 PM   #10
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chefmb,

Glad you had a nice trip! We always have a dinner at 50's PTC. My husband loves eating there.
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