ds11 yr recently diag w/crohns

[leanne11]

i put this on the family board & suggested i move here...ds 11 has been sick
(belly prob) on every vaca we ever took.. sometimes he was in the plane bathroom for 30 min. before we got there.. but now w/18 pills day seems to not be flaring and thank god gaining weight...he lost 45lbs last summer... but we are trying to make a dis trip easy for him..would like him to see some of the park and eat some goodies instead of just being in the bathroom...any sugg....thanks
have note from dr for immediate access to bathroom...

 

[littlewitch34]

I'm 21 and was diagnosed with ulcerative colitis in 2008, and have since had three surgeries to fix it.

I know colitis isn't the same thing, but I did a tour of Disney during one of my worst illnesses (If I can't see a broken bone, I assume I'm fine and power through)

If you'd like to talk about this, I'd love to. PM me?

 

[snorris49]

I can so feel your DS's pain...literally. I was diagnosed with Crohn's last year (I'm 30). I spent the last year getting into remission and trying to feel better. I lost a little over 60 pounds (Ok, I had some extra weight I needed to lose anyway, but still no way to lose weight). I cannot even imagine being a kid and going through that, especially with the weight loss. I'm currently on entocort (yucky steroid) and a barrage of other vitamins to keep up w/the nutritional deficiencies. I know I can't eat a lot of fresh fruits and veggies because they irritate my crohn's, although the longer it goes from the flare the better I can tolerate them. (i.e. I can eat a salad on occassion now, last year it would have set me into a horrible week of pain) I'm also gluten free and I am milk free (discovered I had a milk allergy along the way), which helped me immensely. I noticed a huge change when I made that switch. I've been to WDW 2 times since going GF/CF and having Crohn's. Going again in October. I've gotten a little tummy issues when I've gone. It could have been a lot worse though. WDW is great for special diets, and you should contact Brenda Bennett at the special diets dept. for assistance. They can give you a form to fill out to notify restaurants of special dietary restrictions.

I know that you can get a GAC card that will help with lines and access to the bathrooms. I've not gotten one, so I'm not sure of the procedure. I know, since I've been to WDW a lot, I know where a lot of the close bathrooms are. Perhaps you could mark maps before you go.

If you have any questions, feel free to ask. I can help with what I can on experiences. I'm glad your son is doing better!

 

[SueM in MN]

I can so feel your DS's pain...literally. I was diagnosed with Crohn's last year (I'm 30). I spent the last year getting into remission and trying to feel better. I lost a little over 60 pounds (Ok, I had some extra weight I needed to lose anyway, but still no way to lose weight). I cannot even imagine being a kid and going through that, especially with the weight loss. I'm currently on entocort (yucky steroid) and a barrage of other vitamins to keep up w/the nutritional deficiencies. I know I can't eat a lot of fresh fruits and veggies because they irritate my crohn's, although the longer it goes from the flare the better I can tolerate them. (i.e. I can eat a salad on occassion now, last year it would have set me into a horrible week of pain) I'm also gluten free and I am milk free (discovered I had a milk allergy along the way), which helped me immensely. I noticed a huge change when I made that switch. I've been to WDW 2 times since going GF/CF and having Crohn's. Going again in October. I've gotten a little tummy issues when I've gone. It could have been a lot worse though. WDW is great for special diets, and you should contact Brenda Bennett at the special diets dept. for assistance. They can give you a form to fill out to notify restaurants of special dietary restrictions.

I know that you can get a GAC card that will help with lines and access to the bathrooms. I've not gotten one, so I'm not sure of the procedure. I know, since I've been to WDW a lot, I know where a lot of the close bathrooms are. Perhaps you could mark maps before you go.

If you have any questions, feel free to ask. I can help with what I can on experiences. I'm glad your son is doing better!

You can find information about how to contact the WDW Special Diets Department in post #3 of the disABILITIES FAQs thread.
There is a link to that thread in my signature or you can find it near the top of this board.

That thread also has information about Guest Assistance Cards (GAC) in post #6.
The Guest Assistance Card is meant to give the CMs a way to get a little information about guest's invisible needs. It is not meant to shorten or eliminate waits in line.
A GAC (or a doctor's letter) won't really help with getting into the bathroom right away if there is a line.

A touring plan like TourGuide Mike or Ridemax that helps you to be in the quietest part of the quietest park will probably help you as much as, or more, than a GAC will (a GAC will only help you in attractions and much of the wait or difficulty moving quickly from place to place is not in attractions). One of those touring plans can help you to avoid crowds, which means less wait for everything.
If you can get to the parks early, the first few hours are usually the quietest and will let you see many attractions with a very short wait.

 

[clanmcculloch]

Do you know what foods help or hurt your son's Crohn's? Sticking with whatever diet he eats at home will make a HUGE difference. I know he'll see all sorts of things that he wants to try and he'll swear that he'll deal with the consequences, but kids are very short sighted and don't really understand consequences. It's up to us as their parents to be the bad guys, even at WDW, and make sure that our kids stay healthy. I'm saying this as a mom to 2 kids with long lists of food intollerances, one of whom the doctor can't rule out Crohn's but can't give a definitive diagnosis beyond non-specific colitis and gastritis (she has scar tissue on all the spots you'd typically see inflamation in Crohn's but she was already on a gluten and dairy diet for over a year before her upper and lower endoscopies so by that point there was a lot of healing so nothing specific in the lab results).

Is he on immune suppressing meds? If yes then that's the only reason I can think of that a GAC might help. The GAC could allow for some waits in alternate, not so crowded areas.

I really do strongly recommend TourGuide Mike. A service like this can really help you maximize your time in the parks so you can accomplish a lot in as little time as possible. Lines are short to begin with if you tour right (even during peak season; we used TGM over Christmas) so if you have to suddenly leave a line for the bathroom then it's easy to get back.

If you do have to leave a line, talk to a CM in the line. He may be able to give you a pass kind of like the child swap pass which will allow you to not have to wait in the regular line when you return since you'll have already waited in line. It certainly doesn't hurt to ask.

As strange as this may sound, I've had doctors explain to me that disruptions to your schedule can affect the bowels. This would explain why he seems to flare on vacation. Obviously diet changes will have an impact as well, but in addition to sticking to his diet, sticking to his regular schedule can make a big difference too. Get up at your normal time. Eat at your normal times. Go to bed at your normal time. Also, make sure he stays VERY well hydrated.

Anxiety can also play havoc with Crohn's. The fact that he even flares as soon as you get on a plane makes me wonder about this (though the snacks could also be a factor). Maybe have a chat with his doctor about this possibility. He may do well with a low dose anxiety med for extremely stressful situations (for some people, flying definitely falls in this category). Because he's in treatment he may not have as much of an issue but it's certainly worth having this conversation with his doctor. Just knowing how few bathrooms there are on an airplane could have triggered his anxiety which then leads to a bowel episode.

Something else to consider is his stamina. Make sure you don't try to overdo things. You may be able to rent a pediatric wheelchair (much more comfortable than a full size) or a special needs stroller (if he'd be willing to ride in it; the wheelchair doesn't look like a stroller; the stroller may embarrass him at 11 years old). Here's another plug for TGM. With TGM you can also plan your touring so you schedule good long breaks. If the breaks aren't scheduled, they don't happen (been there done that). It also helped me to pick and choose what we really wanted to and make sure that we at a minimum accomplished those so that we were more free to not feel any pressure to do everything. While it's a lot of work up front, it makes a HUGE difference in the actual vacation. I couldn't believe it when we came back from a 12 night trip and none of us was exhausted yet we had done everything we wanted to do and more. It was so wonderful. I'm a TGM fan for life and yes I'm using the service for both of my upcoming trips.

{{{HUGS}}} You'll get the hang of this as will he. Life will get better as will he. Honest!!!!

 

[leanne11]

thanks soo much..im not sure what all the meds do... pentassa 12/day prevacid 1/day, iron supp 1/day, 6mg 1 day...prednasone for flare ups..16 day today ..im going to try to get him to relax a little more i usually do all the adr and planning but this time im gonna let him decide what park..the bathrooms are so important he really goes every couple of hours so im really worried about the busses...the time from hotel room to wait for bus and then get to park get tickets through turnstile then to a bathroom seems long...car may not be any easier...same with rides...wait in line then preshow/then show then let out..may need to see how long that adds up before i pick the ride..(ie.tough to be a bug)

 

[mommatomase]

First and foremost, I am sorry your son needs to deal with Crohn's. My Dh has lived with Crohn's for 26 years now. We know where EVERY bathroom is in each park and in the lobbies of the hotels where we stay. We have a GPS so when we travel we can find the closest Walmart for a restroom. We also have a child on the spectrum, so special diets and bathrooms take top priority.

As a previous poster mentioned, get maps now and mark all the restrooms and search them out when you arrive. Even if no one in your group needs to use the restrooms, check them out for busyness and potential lines.

There are restrooms beside the hatshop in the square WDW. There are restrooms between Future World and World Showcase (facing WS they are to the left). There are restrooms by Lights Camera Action at Studios. I forget the "not-so-busy" one at Animal Kingdom. We seem to find that these are the least busy of all the restrooms. If your DS feels the need and you have time to reach them, I would try. We visit Disney during off season because of our needs.

Stay away from "new" foods and drink bottled water, not Florida water. You said this is a recent diagnosis? Avoid fiber rich foods, milk products, soda, citrus fruits, spicy foods, legumes, fried or deep fried foods and anything with skin or pulp. What does Dh eat you ask? Everything doctors tell everyone else to avoid... white potatoes, white rice, white bread, meats (not fatty), fish, eggs, some vegetables are ok. (Dh is ok with WELL COOKED brocolli, cauliflower, string beans. Not for everyone with Crohns) Dh can't tolerate many vitamin supplements but chewables seem to be the best.

Good luck. If you have further questions I would be happy to help... Crohns is not easy!!!