First time having Pancreatitis at Disney World?

[Cassandy]

Hello!

I'm going to Disney World in 3 days for 42 hours, to do the Monstrous Summer thing at Magic Kingdom. (I live in Canada. Yes, this is a crazy idea. I'm super excited).

Except that since the last time I was in Disney World (January), I developed acute pancreatitis which is now Ideopathic Recurrent Acute Pancreatitis and Chronic Pancreatitis. Whoo hoo.

I take enzymes before I eat anything that I need to digest (so, anything except Sprite or ginger ale), I take gravol and/or zofran every day, and I'm still throwing up every day. I eat low-fat and no dairy.

But I'm still really new at taking these meds, so I don't really know what to do with them in the parks, or what effects they might have with different temperatures. And it's supposed to be super hot and humid. Help!

Do people keep their enzymes with them? Do you keep them in first aid? How do you manage before eating? What about dissolvable gravol? Is it easy to throw up in the garbage cans? Are there good places to go when you need a bathroom in the next five minutes? Do the restaurants have easy access to fat content information? How do you feel the heat affects your pancreas? How do you deal with the temptation to eat "just one more" bite?

Thank you so much for any help you can give!!!

 

[bopper]

I have no experience in this area except to say bring Ziploc bags if you think you may throw up at any given time. You can throw up in the bag, seal it and dispose of it easily.

Are the meds supposed to be kept cool? Talk to your pharmacist. If so, check out the Frio bags. www.friobags.com

As far as bathrooms, you can look for them on the map. WHen you get into a new land, check out where they are.
http://www.wdwinfo.com/maps/mk.htm

 

[clanmcculloch]

My DD15 has a pancreatic insufficiency. Not the same thing as what you're going through but she can't digest most types of carbohydrates without enzymes. Her symptoms are nowhere near as severe as yours but we do keep enzymes on us at all times just in case she's going to eat something with carbohydrates. If I was in your position, I would never NOT have enzymes with me. Do your enzymes need refrigeration? Back when the doctor was still trying to figure things out he had her try Creon and one other enzyme and neither of those needed it so carrying them was very easy. I'm grateful that none of her current meds need to be kept cool either.

You say you're not sure what affect temperature will have on them. That info should be in the insert that came with the med. If you're still not sure or just don't follow what's in there (there's a lot in there and many many people can't absorb it all) then talk to your pharmacist. Your pharmacist will know everything there is to know about your med(s). He/she will be an invaluable resource to you regarding all things medication related as you continue this journey to figuring out your health issues.

Hydration, hydration, hydration. My guess is that you're nervous about eating. Keeping hydrated will be far more important to you than eating enough. This is especially true if you're throwing up. My guess is that you'd do well with electrolyte drinks but this is really something you'd want to discuss with your doctor and/or Registered Dietician. I'd actually try to get in with a Registered Dietician (make sure it's an RD and not just a dietician; the former has very specific training requirements to use this title while the other could me any shmo off the street who decided to hang a shingle) to see if you can get help figuring out some high calorie foods that will be easy to digest, preferably packed with vitamins, minerals and hopefully also nutrients. I'm thinking of things like meal supplement drinks to keep you going while you get this figured out.

WDW restaurants do not give fat content of their food. But, chefs can customize food to meet health restrictions. If you need an ultra-low-fat meal that's high in simple carbs for instance, the chef can work with you to do that. You'll have much better experiences with TS restaurants than CS.

The temptation you speak of is no different than the temptation my kids and I deal with to take "just a bite" of something that will make us sick. The memory of what happens when we do that "just one thing" action is what keeps us from doing it. It's not worth it.

 

[disfan07]

My DD15 has a pancreatic insufficiency. Not the same thing as what you're going through but she can't digest most types of carbohydrates without enzymes. Her symptoms are nowhere near as severe as yours but we do keep enzymes on us at all times just in case she's going to eat something with carbohydrates. If I was in your position, I would never NOT have enzymes with me. Do your enzymes need refrigeration? Back when the doctor was still trying to figure things out he had her try Creon and one other enzyme and neither of those needed it so carrying them was very easy. I'm grateful that none of her current meds need to be kept cool either.

You say you're not sure what affect temperature will have on them. That info should be in the insert that came with the med. If you're still not sure or just don't follow what's in there (there's a lot in there and many many people can't absorb it all) then talk to your pharmacist. Your pharmacist will know everything there is to know about your med(s). He/she will be an invaluable resource to you regarding all things medication related as you continue this journey to figuring out your health issues.

Hydration, hydration, hydration. My guess is that you're nervous about eating. Keeping hydrated will be far more important to you than eating enough. This is especially true if you're throwing up. My guess is that you'd do well with electrolyte drinks but this is really something you'd want to discuss with your doctor and/or Registered Dietician. I'd actually try to get in with a Registered Dietician (make sure it's an RD and not just a dietician; the former has very specific training requirements to use this title while the other could me any shmo off the street who decided to hang a shingle) to see if you can get help figuring out some high calorie foods that will be easy to digest, preferably packed with vitamins, minerals and hopefully also nutrients. I'm thinking of things like meal supplement drinks to keep you going while you get this figured out.

WDW restaurants do not give fat content of their food. But, chefs can customize food to meet health restrictions. If you need an ultra-low-fat meal that's high in simple carbs for instance, the chef can work with you to do that. You'll have much better experiences with TS restaurants than CS.

The temptation you speak of is no different than the temptation my kids and I deal with to take "just a bite" of something that will make us sick. The memory of what happens when we do that "just one thing" action is what keeps us from doing it. It's not worth it.

I completely agree with that last part. I had that problem in Disney this past December. I have a laundry list of allergies which means my diet is to usually varied much or very interesting. At Disney, all of the chefs made some amazing meals that were soooo good. And even though I knew I should have limited myself, it was just too good to stop. I spent a good portion of everyday of the trip nauseous and in the bathroom (Sorry....TMI) and just feeling kind of lousy because of it. Now we know that happened because of a Combination of a coup,e of GI conditions and probably due to the fact I was still consuming dairy even though I was diagnosed with a dairy allergy a month later.

But that 'one more bite' has landed me in the hospital more times than I care to remember. All I have to do is remember that and I am able to control the amount I eat.

I also agree with the suggestion of seeing a registered dietician. I am currently working with one because I need to gain weight but I also need to be careful of my fat intake (not necessarily low fat but need to be mindful about it) and I can't eat a lot of "normal" calorie dense foods like dairy, coconut, nuts, etc and I can ony eat about half of the amount of food a normal person would eat. The RD has been wonderful.

What about something like ensure or boost? Have you tried either of those? Can you try either of those? I was on ensure for about a year until I developed a soy allergy (and now a dairy allergy). They were one of the only things I could tolerate many days.