Gastroparesis and/or liquid diet at WDW

[BelleMaria]

So I know this is very broad but does anyone with Gastroparesis or an all liquid diet do WDW? And how? And what do you eat?

I actually don't have Gastroparesis but I do have another motility issues that makes me be on an all liquid/yogurt diet. But usually people with Gastroparesis have similar issues as I do. I was just wondering how you do it. Currently there is NO way I could walk around so I will need a wheelchair ( so sad seeing as I wasn't sick in Sept 2012 and could walk 10 miles a day) I'm also planning to try and bring my own yogurts and nutritional drinks to snack on throughout the day. Also random question, is there any nutritional information ( ie calories ingredients) available for WDW food? Just so I can see what I'm eating.... Or am I just on my own ?

 

[Cassandy]

Do thin liquids in solid form (like ice cream or frozen juice) count as liquids for you?

If they do, I've had great experiences with thin and thick liquids at Disney World. Ice creams and the strawberry ice bars are available pretty much everywhere, and I had great experiences with Disney's willingness to use blenders for real food, or to make special blended desserts and food (not to mention regular menu items like LeFou's Brew or milkshakes, if frozen and semi-solid work for you). Also, I guess it's taste; I loved having pureed fried chicken and thick-liquid-consistency strawberry shortcake, but you might not be into that (though seriously, after eight months of baby food I was like, meat puree nom nom! So good! But my hubby thought it was pretty disgusting.)

But it does take a lot of time to prep, so be prepared to wait around 40 minutes to an hour for your food, so it's still a great idea to bring your own stuff, and you can store it at First Aid to keep it cold if you don't want to bring a cooler.

I also found it really easy to not worry about calorie counting and nutritional content while I was at Disney during that time, because I was eating so much and it was stress-free, because for the first time in a year I wasn't actually prepping my own food, and it was more tasty because there was more of a variety of foods and different food than I would normally get to eat at home, and prepped a lot better (even prettier most of the time!). Also because Disney portion sizes are huge and they kept bringing out a big variety of things, like I had seven or eight different dishes at Liberty Tree Tavern that I ate over the course of two and a half hours, it was so good.

I hope you have a great trip, that sounds like a ton of stuff to deal with. Good luck!!!

 

[LisaBi]

BelleMaria - I can't help with special diet at WDW, but just curious if you have a diagnosis. You piqued my interest since you implied that you have lost stamina in a short time. My older son had/had achalasia, but a very aggressive case...he lost 60 pounds in three months....and was too skinny too start with. For most people it just results in very slow motility. But for him, the sphincter totally shut down over those three months. It is very rare and very hard to get diagnosis since so many docs have never heard of it. Surgery mostly corrected it....he still has some motility issues, but for the most part can eat normally...as long as he plenty of water to help wash the food down.

Anyway, good luck getting better and enjoy your trip!

 

[BelleMaria]

Do thin liquids in solid form (like ice cream or frozen juice) count as liquids for you?

If they do, I've had great experiences with thin and thick liquids at Disney World. Ice creams and the strawberry ice bars are available pretty much everywhere, and I had great experiences with Disney's willingness to use blenders for real food, or to make special blended desserts and food (not to mention regular menu items like LeFou's Brew or milkshakes, if frozen and semi-solid work for you). Also, I guess it's taste; I loved having pureed fried chicken and thick-liquid-consistency strawberry shortcake, but you might not be into that (though seriously, after eight months of baby food I was like, meat puree nom nom! So good! But my hubby thought it was pretty disgusting.)

But it does take a lot of time to prep, so be prepared to wait around 40 minutes to an hour for your food, so it's still a great idea to bring your own stuff, and you can store it at First Aid to keep it cold if you don't want to bring a cooler.

I also found it really easy to not worry about calorie counting and nutritional content while I was at Disney during that time, because I was eating so much and it was stress-free, because for the first time in a year I wasn't actually prepping my own food, and it was more tasty because there was more of a variety of foods and different food than I would normally get to eat at home, and prepped a lot better (even prettier most of the time!). Also because Disney portion sizes are huge and they kept bringing out a big variety of things, like I had seven or eight different dishes at Liberty Tree Tavern that I ate over the course of two and a half hours, it was so good.

I hope you have a great trip, that sounds like a ton of stuff to deal with. Good luck!!!

Wow yah good ideas, I creepily scoured some old posts of yours and found out how you contacted the chefs and were able to get special meals. I actually have an esophagus disorder Diffuse esophageal spasms that cause my throat to freak out when anything more than ( and sometimes even liquids) are swallowed. Haha I don't know if I've gotten to the point of puréed meats but I might be soon. Great ideas so far. I do need to keep my call up however since I am very low weight but I assume I can ask a chef to fatten things up.

 

[BelleMaria]

BelleMaria - I can't help with special diet at WDW, but just curious if you have a diagnosis. You piqued my interest since you implied that you have lost stamina in a short time. My older son had/had achalasia, but a very aggressive case...he lost 60 pounds in three months....and was too skinny too start with. For most people it just results in very slow motility. But for him, the sphincter totally shut down over those three months. It is very rare and very hard to get diagnosis since so many docs have never heard of it. Surgery mostly corrected it....he still has some motility issues, but for the most part can eat normally...as long as he plenty of water to help wash the food down.

Anyway, good luck getting better and enjoy your trip!

Hi lisaBe I do have a diagnosis so far. It's called diffuse esophageal spams its actually 5x more rare than achalasia ( but similar in the way they are both esophageal motility or dismotility in your case) and there is no surgery for it and the drugs they prescribe are not meant for it and usually don't help. If anything they have given me MORE issues. For me I don't have choking issues but my esophagus is shaped like a corkscrew and food gets stuck in there and my esophagus starts to spasm which gives pains like having a hear attack and back for hours at a time if not 24/7. At this point none of e drugs are working and wouldn't you know it my doctor at Stanford quit without telling me and I am waiting to see a specialist right now at the end of the month. So right now I am currently having to figure out what I can eat and if I can travel. Hopefully the new doctor should help me.

I am vey sorry to hear about your son. Diseases like this and other motility issues are so horrible. Before this happened I thought it was acid reflux and was taking insane amount of acid reflux meds. I wish my condition had surgical help but even though the Internet says it does , it doesn't. People are just not aware of these diseases and its so sad because these motility doctors I need to see are hard to find. Only a few in the state ( I live in California ) yet they are booked out 3-5 months. Shouldn't that tell the medical field we need more research and doctors in this are?

 

[LisaBi]

Sorry in advance for not PM'ing....but it won't let me!

Thanks for sharing BelleMaria. I know about those spasms all too well. His esophagus is permanently damaged and things do still get stuck...thus the massive quantities of water with a meal. When he gets a spasm it can sometimes put him out for a couple of days. We even had to make a big stink about it on DCL because the server wasn't refilling drinks....we finally got to where we had them bringing several glasses of water at the start of the meal.

The first GI we saw insisted it was just reflux. They have tried heart meds too, but that actually made him worse. Acid reflux meds did nothing for him.

Best wishes to you.

 

[Cassandy]

BelleMarie; wow! My issues were more oropharyngeal (oropharyngeal dysphagia caused by lichen planus and esophageal thrush, yuck), so I can really understand how that much can be super difficult! I hope it settles down for you soon!

The chefs are great about making things high-calorie; I mean, also for them, it's a lot easier to add butter and cream and fats to make things taste better than it is to add artificial things and then they won't. You can ask, especially at places that have ice cream and milkshakes, for them to pile in the sauces and toppings for more calories, and add oil if you do that. I like the chefs who take "hey, how many calories can you put in a thick liquid?" as a personal challenge and make the most ridiculous things they can. And a lot of them do love doing it.

I know pureed meat sounds really gross (and looks pretty gross, I'll be honest, I used to look at my husband's solid food plate when I ate my own), but I remember having the first bite after being on veggie baby food and smoothies forever and it was so, so good. It was just so nice to be eating real food again, even if it wasn't in the normal texture. And meat has the highest concentration of calories and fat, so it's really a great addition if you can swing it, and Disney makes so many different kinds (and they custom-blend their roasted foods, which is better than the baby food meat or pureed sausage I was eating here) it might be a great place to try if you want something more appetizing, or think you can swing the texture.

This is actually really exciting, I've never talked to anyone with swallowing issues too, before.

 

[Bete]

My mother had the same condition. When the diagnosis was given she was 89. She already had Alzheimer's disease. She had acid reflex, too. According to her doctor she had the worse case of diverticulitis he had ever seen. The combinations here just made it so much worse.

Puréed foods and baby foods and protein drinks became her main stay. I actually brought a hand driven portable blender with me on trips; so, I could purée foods away from home. We carried it in a diaper bag. Disney is better about doing this for you then many other places. We were told to stay away from meat by the doctor and never use a straw. If trying to eat regular food the best we could come up with at Disney was jello, yogurt, ice cream, certain smoothies, pudding, mashed potatoes, cottage cheese if mashed up and certain soups. If I think of more food items I'll come back and post. She could suck on some candies; so, this helped on doing a snack.

When she could tolerate more at the beginning we would cut up up her food finely and asked her to chew and chew and chew and drink after each mouthful.

Just before she died at 91 we were getting to the point of considering a feeding tube. This is a hard choice, but it may ultimately be the only sure way if other measures don't work. With my mom having Alzheimer's it was real tough making the choice of a feeding tube.

I agree with the other poster that you may not get good nutritional info at all Disney eateries. It will be hit and miss in my opinion. I never went the route of working with the Disney chefs; because, we did most of her nutrition on our own. I would bring your protein drink with you to the park. You may be able to freeze it and as it thaws you can drink it at the parks.

Some people with the condition keep a diary on what they can tolerate by mouth. This helps them eat some regular foods.

 

[goofieslonglostsis]

As far as cal. values; count on your own knowledge and provisions. I've found in 99% of the time I could get no info (reasons ranging from "no idea" to "not 100% sure, don't want to hand out wrong info, so giving no info is chosen method"). Now, most of the times I would use Disney foodlocations it would be CS because of my other health issues, but same experience with most of the TS I have done in the trips I would be counting.

Much easier route is stuff that basically is something that requires them doing instead of giving you info. So for instance the mentioned adding cals. Or as I've had happen many times; running into a nearby location to grab something for me out of own choice (I tend to drink lemonade, which in quite a few locations is not clearly marked to be either regular and thus with cals or diet. Many times a question would result in "not sure, but someone has been sent out to get you regular of which we know for sure it is regular").

Now, you can do things yourself. Training goes a long way. Learning what a general upmake of a produce is for instance. For an ounce of pureed fruit (icecream not prepackaged) etc. etc. If need be; bring along a little booklet with said info. And when calculating; stay on the safe side. Allways err with caution rather having counted too little cals than too much and rather having a "too high" intake than low.

Also keep in mind that a day at WDW will take much more out of your body than a day at home. With that you run the risk of same intake at WDW as home resulting in weightloss. Keep a very close eye on that and better yet given the recent history with your weight; start an adjusted higher diet for at least the days at WDW. Given the very recent big weightloss your body can very well still be dealing with aftermath of mallnurishment. A sudden big increase in what you are burning per day can be quite a shock to the system then if not also adjusting your intake.

And did you realise yet that iecream many times comes prepackaged? Read; all nutritional info printed right on it.


I have to follow a high cal and high protein diet, where about 20% of my intake comes out of what I put in my mouth and 80% enteral feedings (tube). While getting the exact info would make things a lot more precise and relaxed, falling back on how used I've gotten to counting and knowing what is in what (after all proper home cooking is learning that exact same thing, no values printed on lettuce leaves for instance etc. ) and knowing that it is very easy to overcount what you think you've consumed when it is a struggle to hit targets and counter that overestimating by always taking off a percentage. When doing that plus sticking to an adjusted diet for WDW (where I do use up a lot more, never mind 95% of it consisting of "doing nothing, lying on bed", I tend to stay on weight. No counting, no adjusted enriched diet or alikes and sure enough I will come back with the scale not in my favor.