Doing Disney with an ileostomy

I understand what you are saying (and I appreciate how you worded your post so it doesn’t feel judgmental or rash. I understand that since ostomys aren’t discussed often there isn’t a lot of knowledge surrounding them). I have a double whammy against me. I have Crohn’s disease as well as an ileostomy. Due to the crohns and having my colon still in tact I still have issues surrounding that which still requires immediate use of a bathroom (although it has lessened it still pops up and can’t be timed or scheduled). With my ileostomy it’s different since I don’t absorb water and therefor don’t absorb as many electrolytes as a normal person. Dehydration for me can happen rapidly and it’s more than just “I’m thirsty” it’s my kidneys shutting down and an emergency situation which is why I said hydration is very much needed for me while in the parks. Since water isn’t absorbed it essentially passes through my small intestine and goes right in the bag (it’s still important that I drink it but I have to vary my drinks so I get electrolytes as well) when I drink water my bag fill very quickly and that’s when I have the most issues in that my bags will burst-even “high output” bags which hold more. Vegetables, beans, fruits with skins, popcorn kernels, nuts (there’s a very long list of things) all can cause what is called a blockage or partial blockage. This is where all these things clump together and can not pass into the bag. This is a life threatening situation which causes vomiting and no output into the bag. Things like broccoli can cause gas which I’ve also had bags pop due to being full of gas. Finally, there’s just an issues of barrier breakdown (since bags are stuck on via a large “sticker” to the skin-that is called a barrier) the stool that comes out of your small intestine has a high amount of stomach acid in it and as the bag is worn that barrier begin to breakdown. I build it up as much as possible but it’s going to happen, if the barrier breaks down to fast or I’m really sweaty that seal comes undone (like you wore a sticker to long and your sweat broke down the stickiness of it) these cause leaks, sometimes limited to the area around my ileostomy and sometimes it’s worse and leaking stool all over my clothes. There are other issues in regards to leaks but you get the idea.

As I’m home I’m introducing new foods in at small amounts and seeing/hoping things go well. Ideally I’ll eat small meals and snack to keep my energy up but I’ve also noticed if I don’t eat my bag fills with stomach bile, I get sick, and I get light headed and dizzy, so even if I don’t eat anything my bag will still fill with liquid output. The thing about an ileostomy is that it can’t be controlled in any way. If I don’t eat it will still push whatever is in my stomach through (stomach acid and bile) if I drink a lot or eat soup it’ll cause liquid output very quickly and if I eat normally it may have slower output but due to my crohns it may push it through faster because it’s irritating my stomach or intestine. My crohns also doesn’t have specific trigger foods either, I could eat something and be fine one day but eat it again the next day or a week later and it’s not ok and that it could be ok again. It’s just very unpredictable and I’d hate to wait in a long line (after I emptied my bag before standing in it) have my bag fill with liquid and then burst either while in the line (having stool get everywhere, wind my way out of the line with stool all over me, get to a bathroom and change my clothes and bag and then hope I can make it back to where my family is and not miss the ride with my kids) or have my bag pop or have a massive leak while on the ride and cause a mess on me and the seat and maybe the people around me as well. I recognize if I miss the ride with my family it’s not the end of the world but it’s still a time which my kids may be upset because mommy missed another thing with them or whatever.

I also understand that I may be determined to not be eligible for a DAS and that’s fine. I’m not sure what my backup plan would be if my bag filled and leaked while in line or on a ride but I’ll have extra bag changes, a stoma cap, extra clothes, and a support or hernia belt all at the ready and the tips about handicap restrooms and first aid are super helpful and appreciated. :)
Based on the additional detail you've provided, I believe Disneyland may be a more suitable park for you that WDW. The weather is not humid, and if you avoided the hotter months (Jul-Oct), sweating may not be as much of an issue. Granted southern CA does have heat waves, so there'd be no way to predict that.

The rides are generally closer together, as is access to general restrooms (not necessarily companion ones, but I'm actually not familiar with where they're located. I believe there's at least one in each area of the park.) Should you not be granted DAS, the general rule is that you can get a lot of rides in at rope drop, as it is more of a locals park and they tend not to show up until closer to 10-11am. It's possible to do anywhere from 5-8 rides in the morning before the crowds show up, and then focus more on shows and characters in the afternoon along with FP rides. Many rides are walk on or short waits first thing in the morning. The characters and shows would be much easier to exit the lines as it's rarely a switchback queue. With this sort of a plan, you may not miss out on anything with your kids.

The onsite hotels don't require transportation to get back to your room...they're within walking distance. Likewise, if you prefer off-site hotels, there are many right across the street that are even closer than 2 of the on-site hotels - maybe a 5-10 min walk from the parks. This way, you wouldn't have to stress about carrying a lot of supplies with you. You could easily return to your hotel to restock if you start to run low.

I believe the busiest seasons are the weeks of Christmas-New Years, Halloween season, and spring break. The past 2 summers that I've been haven't had huge crowds - actually, once the passholders are blocked out, the park becomes quite pleasant crowd-wise. It's still busy, but not crushing crowds.
 
Based on the additional detail you've provided, I believe Disneyland may be a more suitable park for you that WDW. The weather is not humid, and if you avoided the hotter months (Jul-Oct), sweating may not be as much of an issue. Granted southern CA does have heat waves, so there'd be no way to predict that.

The rides are generally closer together, as is access to general restrooms (not necessarily companion ones, but I'm actually not familiar with where they're located. I believe there's at least one in each area of the park.) Should you not be granted DAS, the general rule is that you can get a lot of rides in at rope drop, as it is more of a locals park and they tend not to show up until closer to 10-11am. It's possible to do anywhere from 5-8 rides in the morning before the crowds show up, and then focus more on shows and characters in the afternoon along with FP rides. Many rides are walk on or short waits first thing in the morning. The characters and shows would be much easier to exit the lines as it's rarely a switchback queue. With this sort of a plan, you may not miss out on anything with your kids.

The onsite hotels don't require transportation to get back to your room...they're within walking distance. Likewise, if you prefer off-site hotels, there are many right across the street that are even closer than 2 of the on-site hotels - maybe a 5-10 min walk from the parks. This way, you wouldn't have to stress about carrying a lot of supplies with you. You could easily return to your hotel to restock if you start to run low.

I believe the busiest seasons are the weeks of Christmas-New Years, Halloween season, and spring break. The past 2 summers that I've been haven't had huge crowds - actually, once the passholders are blocked out, the park becomes quite pleasant crowd-wise. It's still busy, but not crushing crowds.
I think my husband, mom and I are for going to Disneyland. The set backs are more finding flights that are nonstop and the price of the close hotels to the parks but we’d rent a car either way (just leaving supplies in a hot car isn’t advisable). My dad feels it’s cheaper to do WDW and he prefers WDW over land. We’re still in debates right now. But either park I feel well have fun
 
I think my husband, mom and I are for going to Disneyland. The set backs are more finding flights that are nonstop and the price of the close hotels to the parks but we’d rent a car either way (just leaving supplies in a hot car isn’t advisable). My dad feels it’s cheaper to do WDW and he prefers WDW over land. We’re still in debates right now. But either park I feel well have fun
You'll definitely have fun no matter what. Happy planning!
 
At Disneyland you can find hotel/motels that are so, so close to the entrance, they're closer than parking. Those very close hotels are generally cheaper than the very close WDW hotels such as Bay Lake Towers or Boardwalk, and maybe even a shorter walk. I like WDW because of the "bubble" which isn't very easy to do in the middle of Anaheim.

Make sure you give yourself extra time with TSA. My daughter has a feeding tube which is inserted into the abdomen, and other medical devices. We've tried repeatedly to make an appointment (as they direct to do with complicated screening) with TSA Cares, but time after time the appointment is not honored, the agent doesn't know what we're talking about, etc. You may have to advocate for yourself in telling the agent they MAY NOT see anything attached to you, you don't have to lift up your shirt, they are NOT allowed to touch it or swab it, and so forth. One time they took so long to screen her that another agent found her medication on the belt and turned it into Lost & Found! I have also alarmed repeatedly for explosive residue, giving me the extra-special, private room, front-of-hand patdown, which they said could have been set off by any number of ointments, powders, laxatives or medications which my kiddo needs, so now I wash my hands right before going through TSA. Anyway, give it an extra 20 minutes easily just in case you get the Mr. Magoo of TSA agents. It's really hit or miss.
(PS My daughter swims with a feeding tube, I know it's quite different and I don't know about leakage, but we have used a protective belt made of neoprene with something like a turtle shell built in, which keeps it from being dragged or bumped.)
 
Another helpful tip- for bag changes, feel free to take advantage of the larger 'Family/Companion Restrooms' located around the park! It's much bigger & has more space to re-arrange, re-organize your supply bag, etc.!

Have a great time!
 

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