Anyone with gastroparesis?

[geek+nerd]

I was recently diagnosed with gastroparesis and am trying to adjust to this tremendous lifestyle change, which includes saying goodbye to all my favorite Disney foods

DH and I are planning on making a trip to the World in June, and I thought I would check to see if anyone else with GP has any advice. Because my diet is now so limited and I can only eat small quantities, I'm not sure if just bringing my own food and maybe some liquid nutrition would be my best bet.

 

[Happy Dreams1]

I don't know much about how to handle WDW with the condition, but I sort of wanted to ask you something. Have you considered a gastric pacemaker? If you have not, then it would be good to ask your doctor about it. It would be life-altering.

 

[clanmcculloch]

Once you've had more time to figure out what foods do and don't work for you, you'll be in a better position to figure out if you'll be able to sample some of your favourites or not. I suspect that what'll overall work best for you at WDW is to follow a similar diet to what those who have gone through gastric bypass surgery do. They tend to eat small amounts on more regular intervals and eat low fat low fiber foods. Eating slowly is also important. Sharing meals will be your friend. This way you aren't ordering big meals that you can only nibble. Obviously this doesn't work at fixed price restaurants and if you're interested in those then you have to think of the cost of those meals as the price of admission for the experience (characters, show, atmosphere, etc). Also, if there are foods on the menu that look like something you'd be able to eat if they were altered to maybe not have a sauce or be baked instead of fried or with a different side then discuss this with your server and possibly ask to speak with a chef to find out what can be done to make the foods something that you can eat without discomfort. You can probably also just order a side dish (maybe mashed potatoes) or a small soup or chili (assuming these are safe for you) instead of a whole meal assuming you're at a restaraurant that's not fixed price.

Really you need to focus on figuring out what foods do and don't work for you and that same method will work at WDW.

 

[ChristineNic]

I have a gastric band. If your eating restrictions are similar to what the PP outlined (small meals, low fat, low fiber), Disney TS restaurants were amazingly accomodating for me. At most restaurants, I opted to "share" my husband's meal. I was never charged a sharing fee and several of the restaurants plated a portion of my husband's meal on a small plate for me. At the Kona cafe, they permitted me to order 1 macadamia nut pancake.

At counter service restaurants, I ordered child's meals.

Once you determine your restrictions, Disney will do anything they can to accomodate you.

Good luck with managing your condition.

 

[PatMcDuck]

My daughter had this for a few years, it has since gone away. (it was related to many other conditions and medications). She was very sick for months before the gastropariesis diagnosis.

She was helped greatly by medications, enough so she ate pretty normally. She alternated with erythromycin and prevacid I think, using each for several weeks at a time, then switching if it seemed to not work as well.

Good luck to you, as this was a miserable situation for months for DD.

 

[Pinmaniac]

I have gastroparesis. As with PatMcDuck's DD I was very sick before the diagnosis which unfortunately took nearly a year to track down. I haven't spoken with any others who have gastroparesis. With me as long as I stay away from certain foods (for me tomato sauce and greasy foods are worst) and do not over eat at one sitting don't have problems. I've been to Disney World for several years now with gastroparesis and with one exception have been fine.

 

[geek+nerd]

Thanks for the replies. I guess so much of this is jut figuring out what I can tolerate. I'm hoping I can at least have bites of my favorites (cupcakes at Starring Rolls!) when we go.

My doctor thinks it was triggered by a stomach virus that I had at the beginning of the school year.

 

[eternaldisneyfan]

I have severe gastrparesis & get tpn for my nutrition. for a while I used reglan and ate small meals. you can always just taste.

 

[mayaflysmama]

My daughter also has CIP and gastroparesis. She is TPN dependent and has been for 6 years, prior to that she tolerated J tube feeds. We have done Disney twice with tube feeds and once on TPN. She is able to do tastes once or twice a day so she just will take a taste of what we have if it is something that she tolerates. What do you do at home? I wouldn't rock the boat too much and if you do liquids at home I'd stick with what is working. We try hard to just change the focus on our trip away from ADRs and food. It limits the rest of us a bit, but there is so much to do it's not that hard and when we do find a Disney treat she can sample we make a point to stop and enjoy.

 

[AmericangirlinFrance]

Sorry to resurrect a dead thread! I have also been diagnosed with gastroparesis recently. I was sick for several months, had my gallbladder removed in early September of this year, got better for about a month, then went downhill again.

Thankfully, my gastroparesis is not as bad as some have described (tube feeding, etc. - this scares me! ), and my doctor has started me on a new medication - domperidone. It's only available in Canada, but my dr. says he has great success with it and it works better than Reglan with no side effects.

I have some days that are better than others. I have a lot of days where I just feel very nauseous even if I'm not eating or drinking much.

My husband and I were supposed to be in Disney this week, but we pushed our trip back to leave this Sunday in hopes that I will be better after trying a new medication (and getting a refill of Zofran for my nausea).

I have a huge bag packed full of some "safe foods" for me - saltines, plain rice Chex, applesauce, etc. The main thing I'm worried about is being too nauseous to enjoy my trip. The other thing is that I will be too weak to enjoy it - I have lost a lot of weight and I can't eat much, so I just have very little energy. I have been looking forward to this trip SO much, but I'm nervous.

OP, how did your Disney trip with gastroparesis go?

 

[geek+nerd]

I'm glad you posted! We haven't gone yet; I am a teacher so our trips to the World have to happen in the summer. We are going on June 29 for 11 days.

I also have an orthopedic disability since birth and use a manual wheelchair when we do visit the parks; I could never walk them

Lack of energy has been one of my biggest issues, too, because I'm just not eating enough.

My vomiting has been under control since I started the GP diet, but I still get bad nausea, to the point where I hope I throw up.

Like you, I am planning on taking lots of snacks that I can tolerate. We are only going to do 4 ADRs because with the small amounts of food I can eat, it would be a waste of money. I'm bummed that we won't get to do a character meal this time; we usually do at least one.

I'd be interested to hear how your trip goes. Feel free to PM me or post here!

 

[AmericangirlinFrance]

I'm glad you posted! We haven't gone yet; I am a teacher so our trips to the World have to happen in the summer. We are going on June 29 for 11 days.

I also have an orthopedic disability since birth and use a manual wheelchair when we do visit the parks; I could never walk them

Lack of energy has been one of my biggest issues, too, because I'm just not eating enough.

My vomiting has been under control since I started the GP diet, but I still get bad nausea, to the point where I hope I throw up.

Like you, I am planning on taking lots of snacks that I can tolerate. We are only going to do 4 ADRs because with the small amounts of food I can eat, it would be a waste of money. I'm bummed that we won't get to do a character meal this time; we usually do at least one.

I'd be interested to hear how your trip goes. Feel free to PM me or post here!

I'll definitely let you know how it goes, I'll come back and post here.

Are you on any meds for your gastroparesis? Are they helping?

 

[KPeveler]

My wife and I, it turns out, both have "intermittent" gastroparesis - which means it is related to other conditions and is very difficult to manage.

We are just starting on this road, and so have little advice to offer, but wanted to wish you luck! Also, I know neither of us had problems at the Food and Wine Festival since the portion are all really small!

 

[disfan07]

I have gastroperisis. But mine is secondary to other issues. We doscovered mine when I had an upper GI small bowel follow through that took 8+ hours to complete! (normal is like 3 1/2 hours max). I also have some other undiagnosed GI motility issues that we are dealing with

I'm not on any medications for it. My GI doesn't want me to take them. He hates reglan and said the side effects are not worth it.

I'm on miralax to help with my chronic constipation (I take 3 doses/day). But otherwise I eat small amounts througout the day...never big meals. But my diet restrictions are mainly because of my food allergies. For me I can't eat:

Wheat, oats, eggs, shellfish, peanuts, tree nuts, coconut, sesame
I also can't eat full fat dairy (REALLY iritates my GI problems). I am also lactose intolerant so I limit low fat/fat free dairy also
I also limit my soy intake....It just doesn't agree with my GI system
I also cannot eat most raw fruits adn veggies b/c of oral allergy syndrome.

So as my doctor said, I'm already avoiding most foods that can commonly cause problems so there's not much more for me to do. I do take zofran everyday. How much I take depends on how bad the day is. Some days I can go with it just once or twice a day, but otehr days I take it every 4 hours (6x day).

I havent gotten any better with the changes in my diet (in fact, ive been getting slightly worse) but we think that for me, once we figure out the primary issue, my gastropersisi and motility issues should get better as well.

 

[AmericangirlinFrance]

I have gastroperisis. But mine is secondary to other issues. We doscovered mine when I had an upper GI small bowel follow through that took 8+ hours to complete! (normal is like 3 1/2 hours max). I also have some other undiagnosed GI motility issues that we are dealing with

I'm not on any medications for it. My GI doesn't want me to take them. He hates reglan and said the side effects are not worth it.

I'm on miralax to help with my chronic constipation (I take 3 doses/day). But otherwise I eat small amounts througout the day...never big meals. But my diet restrictions are mainly because of my food allergies. For me I can't eat:

Wheat, oats, eggs, shellfish, peanuts, tree nuts, coconut, sesame
I also can't eat full fat dairy (REALLY iritates my GI problems). I am also lactose intolerant so I limit low fat/fat free dairy also
I also limit my soy intake....It just doesn't agree with my GI system
I also cannot eat most raw fruits adn veggies b/c of oral allergy syndrome.

So as my doctor said, I'm already avoiding most foods that can commonly cause problems so there's not much more for me to do. I do take zofran everyday. How much I take depends on how bad the day is. Some days I can go with it just once or twice a day, but otehr days I take it every 4 hours (6x day).

I havent gotten any better with the changes in my diet (in fact, ive been getting slightly worse) but we think that for me, once we figure out the primary issue, my gastropersisi and motility issues should get better as well.

Wonder if you have tried the medication domperidone? Not available in the U.S. - your GI has to give you a RX and you have to order it from Canada. It works like Reglan but WITHOUT side effects. It also acts as an anti-emetic.

I have just started taking it, so I'm curious to see if it will help me. I also take Miralax and Zofran. I have terrible chronic constipation - I get so constipated, which makes my nausea worse, which makes me not eat, which makes the constipation worse... you know how it goes.

Hope everyone on here finds some relief soon!

 

[disfan07]

Wonder if you have tried the medication domperidone? Not available in the U.S. - your GI has to give you a RX and you have to order it from Canada. It works like Reglan but WITHOUT side effects. It also acts as an anti-emetic.

I have just started taking it, so I'm curious to see if it will help me. I also take Miralax and Zofran. I have terrible chronic constipation - I get so constipated, which makes my nausea worse, which makes me not eat, which makes the constipation worse... you know how it goes.

Hope everyone on here finds some relief soon!

A pharmacuetical here has been trying to get that drug approved here for decades. Even though trials showed it was safe and effective, the FDA still wont approve it. Its ridiculous.

Unfortunately there are a lot of medications that many of my doctors would like to try but they are only approved in Europe or Canada. Same with some drugs that are approved in the US but not approved for what I need it for (yet its been proven to work in other countries and is approved there). And unfortuantely we cant afford it without insurance coverage.

My GI did mention though that there are some new treatments/medications from Eurpoe and Canada that will be available in the US early next year so we are just waiting and crossing our fingers. He said they have had amazing results in Eurpoe with these medications for years but are just now figuring it out here.

Yeah the chronic constipation is the worst. I ended up in the ER at the beginning of November with severe consitipation. But becasue I wasnt in too much pain (I'm used ot it) they released me and put me on magnesium citrate. I was on 1 bottle of mag citrate PLUS 3 doses of miralax EVERY DAY for 15 days before it worked. But the day it started working was also the day I go the stomach virus so we dont know if the mag citrate actually worked or if it was the stomach virus...lol.

 

[geek+nerd]

New but related question. Has anyone noted gastroparesis when making ADRs? DH and I are about two weeks away from being able to book and have scoured menus to decide where are the most likely places I will be able to find something to eat. My best bet looks like it is going to be off kids menus (I am excited for Blue Zoo!) even though I know I won't eat a whole portion of anything.

Just wondering if anyone noted it on ADRs like people do for allergies or if you think this wouldn't be necessary.

 

[clanmcculloch]

I think whether or not to make a note on ADRs is whether or not you'll need alterations made to your meals. What kind of alterations do you foresee needing? That if anything would be what you would note, not the diagnosis. If you'll be ordering from the regular menu and just ordering kids meals or appetizers or sides then there's no need to notify anybody ahead of time. If you need extremely low fat (and I'm not just talking about the kind of low fat that you can do by way of just choosing white meat over dark meat; I say this one because fat is slower to digest and extreme low fat helps some with GP) then it doesn't hurt to make a note. If you'll just need sauces left off then just asking your server for that is sufficient without any kind of head's up on your ADR. I hope this is making sense.

Short version: make a note if you need alterations to your meals, don't make a note if you don't need alterations beyond just having stuff prepared plain.

 

[geek+nerd]

Thanks. I think I am going to make a note of something like "food needs to be prepared with no added fat or fiber." I have not had a vomiting episode since starting the GP diet and my nausea, while still there, is not nearly a severe as it was before I was diagnosed and started the diet.

 

[AmericangirlinFrance]

Thanks. I think I am going to make a note of something like "food needs to be prepared with no added fat or fiber." I have not had a vomiting episode since starting the GP diet and my nausea, while still there, is not nearly a severe as it was before I was diagnosed and started the diet.

We're supposed to leave tomorrow for WDW. No ADRs... I am scared of eating I have a feeling I'll be doing a lot of liquid calories and some of my safe foods I'm bringing (saltines, Rice chex, fruit cups).

I'm feeling a little better on the new medication... but still just have that underlying "icky" feeling pretty much all the time. It's better when I don't eat, but I can't do that forever. I feel like food is the enemy.