Ileitis and Disney

[LWatson]

not sure I put this in the right place, so if its wrong can you move it for me.

Thursday morning I woke up at 1am in tons of pain, but I held off going to the hospital till 1am friday after it didnt let up. They thought I had appendicitis because of the extreme pain, inability to hold anything down (including the 3 bottles of contrast for the CT), and the location. Turns out its Chron's Disease Ileitis. I've tried eating things as simple as cereal, turkey, sandwiches etc and everything I eat HURTS. The nurse has suggested eating foods high in soluble fiber, some protein, rice, apples, pears, and green leafy veggies. I've also tried drinking water, almond milk, kool-aid, juice, and soda. The only one that has not caused any pain and stayed down was the soda (nurse told me liquids high in sugar would probably be the only ones to not cause pain, but to try not to drink too much). I'm having problems finding things to eat here, so I'm really worried I will at Disney. Do I contact them and tell them now that I'm on a limited diet, or do I not worry about it yet and pray I'm in one of my down periods (doc says the painful periods will come and go) and if not then tell them then? I'm at a loss of how to deal w/ this (esp after losing my gallbladder last year and already having to modify my diet for that). I'm embarrassed to ask my TA about it because she is a friend, and I cant talk to my mom (another TA) about it because I dont want her knowing we are going since she is very opinionated about it.

My nurse suggested keeping slim fast and/or Ensure around the house to drink (esp for breakfast), but we are staying at a value w/o fridges and I'm not sure I want to drink warm slim fast or Ensure.

UGH I'm sorry. I'm just flustered.

 

[mommasita]

I am terribly sorry you are going through all that

I would suggest contacting them, ask for a fridge, and if you have a medical note I think it would make it much easier.

Are you renting a car? Perhaps you could stop and pick up some things you need, that would be practical for you to eat. Also, not that this will happen (or i hope it does), but I would map out a nearby clinic and/or hospital. I would rather be prepared and NOT need it.

Finally, I hope you have a Magical time.

 

[LWatson]

We are driving down, so thankfully we will have our car w/ us. I will deff have info on close hospitals carried w/ me. I am hoping to learn how to deal and cope b4 then so I'm not stressing there. Last thing my kids need is mommy stressing during vacation...lol. I'm going to go back and meet w/ my doc again this week to schedule my colonoscopy (I'm 26 that is something I never thought would happen to me), and I will talk to him then about eating.

 

[drjamba]

I'm so sorry to hear about your pain. While I'm not a Crohn's patient, I know folks who are.

Here's something that might help the refrigeration problem: Whichever drink you take along, also take a large martini shaker and strainer. Shake your drink over a full shaker of the free(!) ice your accommodations provide (most hotels/motels have ice machines, don't they?), strain out the ice, and your warm Slimfast or Ensure will be cold in seconds and not watered down.

I've done this at work with the hot tea my employer provides so that I can have iced tea with my choice of sweetener.

I hope it all works out for you.

Dr. Jamba

 

[kymom99]

Our first trip was in a value and we brought along a big cooler. My husband filled it every day with ice from the ice machine. We had plenty of cold things to drink. You'll feel more relaxed if you bring along your own things you are able to eat. It will be less stressful for you than trying to figure out each day what you can tolerate. Like anyone on a restricted diet, you just need to do a little extra planning.

Good luck on your trip, and most important, good luck dealing with your illness.