Doing Disney with an ileostomy

lookame

DIS Veteran
Joined
Aug 21, 2011
i had surgery recently and now have an ileostomy. I have a few questions (even though I’ll be going next year)
1) I wear cut to fit baseplates when security checks my emergency supplies (which has a few full changes including baseplates and bags) will my dull scissors be allowed in?
2) will they rummage through my supply case or will they look and see it’s ostomy supplies and be satisfied (I keep it pretty well packed and it’d suck to have to reorganize it)?
3) I understand I wouldmaybe qualify for a DAS so I could empty my bag before I go on a ride (so I wait outside the line) would I be able to go on a ride which the line is short while I wait for my return time? This is for my kids and if I’m confident in my bag- I am also not asking if I DO or DO NOT qualify-There’s a lot of focus on me getting a DAS period, that was not my question. Not only that but there are several reasons why the DAS would be helpful in my situation-my bags pop, my bag fill quickly and without notice so emptying before waiting in a long line won’t always work, I still have my colon with active disease and urgency issues with that. Please don’t give me uneducated answers about a question I didn’t even ask and certainly do not tell me to time my “potty breaks” I have an ileostomy and there is no “timing” and having active disease in my colon, again there’s no “timing” thanks
4) swimming with an ostomy (as a general question) do I need to tape down my edges or do anything special to prevent leaks? Change out my 2 piece to a one piece while swimming then back to my 2 piece after?(I feel like thatd be rough on my skin though, maybe I should tape around the rings?)
5)any tips for doing Disney or flying with an ostomy? Right now I’m in a 2 piece but I wear a one piece sometimes.
6) do I need to show tsa my ostomy supplies with my small travel scissors or can I keep those in my personal item? (ATM I used rings and no paste but I do use stoma powder and barrier spray)

Thanks for your answers. I’ve dealt with crohns for 10 years and thankfully have been in symptomatic remission everytime we’ve done Disney so I haven’t used the DAS but it’d suck if I waited in line, my bag filled and I had a massive blowout while on a ride. I wear ostomy wraps from Ostomysecrets so that helps keep the bag supported. Thanks everyone!

*we aren’t sure yet if we’re doing Disneyland or disneyworld so if there are differences between the two please point those out*
 
Last edited:

gap2368

DIS Veteran
Joined
Feb 27, 2015
i had surgery recently and now have an ileostomy. I have a few questions (even though I’ll be going next year)
1) I wear cut to fit baseplates when security checks my emergency supplies (which has a few full changes including baseplates and bags) will my dull scissors be allowed in?
2) will they rummage through my supply case or will they look and see it’s ostomy supplies and be satisfied (I keep it pretty well packed and it’d suck to have to reorganize it)?
3) I understand I would qualify for a DAS so I could empty my bag before I go on a ride (so I wait outside the line) would I be able to go on a ride which the line is short while I wait for my return time?
4) swimming with an ostomy (as a general question) do I need to tape down my edges or do anything special to prevent leaks? Change out my 2 piece to a one piece while swimming then back to my 2 piece after?(I feel like thatd be rough on my skin though, maybe I should tape around the rings?)
5)any tips for doing Disney or flying with an ostomy? Right now I’m in a 2 piece but I wear a one piece sometimes.
6) do I need to show tsa my ostomy supplies with my small travel scissors or can I keep those in my personal item? (ATM I used rings and no paste but I do use stoma powder and barrier spray)

Thanks for your answers. I’ve dealt with crohns for 10 years and thankfully have been in symptomatic remission everytime we’ve done Disney so I haven’t used the DAS but it’d suck if I waited in line, my bag filled and I had a massive blowout while on a ride. I wear ostomy wraps from Ostomysecrets so that helps keep the bag supported. Thanks everyone!

*we aren’t sure yet if we’re doing Disneyland or disneyworld so if there are differences between the two please point those out*
1 I bring rounded tip scissors with me every time I go and they have never said a word to me about them

2 I have had a few look bought my medical bags some just unzip it to just depends if you do not want them handling things put things in ziplock backs so they can tell what is in them and put the ziplock bags in another bag

3 if given the DAS then yes you can do shorter rides remember the DAS is need based not DX based so you will need to tell the CM why you need to wait out side the lines not all disabilities need a DAS

4I would ask your dr

5 do not know

6 you can check with TSA with your question about scissors on if you can bring them or not ( might be how big they are and such but you might need to check them with your check bags )
 

Mrsjvb

DIS Veteran
Joined
Sep 5, 2007
You would empty the bag/ check before getting in line so are not necessarily eligible for DAS. It’s no different than planning potty breaks.

In other words, needing to t change your bag is not a valid reason.
 
  • lookame

    DIS Veteran
    Joined
    Aug 21, 2011
    My bag can fill up very quickly and without notice. So if I need to wait in long lines it’s very possible it could cause issues on the ride. I doubt anyone wants to be splatted with feces because I couldn’t empty right before I get on a ride. Not only that but (and I hope it calms down at some point) but I still have my colon with active disease and still have blood and urgency issues (which I won’t go deep into those details). I had people tell me I couldn’t get a DAS when I had (still have) active crohns with urgency issues and so I never tried and it made my trips not as enjoyable as they could have been because I had to miss out on rides or my family and I had to wait until I felt better as I was running to the bathroom. I was told then that I had to stop by a bathroom and force myself to go or take Imodium and not try for the DAS. (Having an ileostomy it never stops producing so even when I take Imodium that won’t help. I’ll also be drinking a ton of water and electrolyte drinks so I don’t get dehydrated so my output will be a lot more often and very liquid making it even more likely that my bag will fill quickly). I’ve also had my bags randomly pop on me, not leak, literally pop like a balloon...imagine that happening while waiting in line and/or on a ride.
    You would empty the bag/ check before getting in line so are not necessarily eligible for DAS. It’s no different than planning potty breaks.

    In other words, needing to t change your bag is not a valid reason.
     

    seashoreCM

    All around nice guy.
    Joined
    Aug 25, 2001
    If during your normal life routines you need to go potty unusually often then that may qualify for getting use of the Disability Access Service. But guest relations CMs generally do not know medical terms such as ostomy bag or electrolyte or hydrated.

    Also you have to beware of ride cushions and restraints (Flight of Passage comes to my mind; you lean down on a narrow cushion that touches you from groin to breastbone) that may hit and squash the bag and you may need to chicken out of a ride because of this.
     
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    lanejudy

    Moderator
    Moderator
    Joined
    Oct 27, 2011
    Nobody here on the DIS can say for certain that you will or will not be granted a DAS. Only a CM at Guest Relations can make that determination, based on your request. When you speak with them, discuss your needs pertaining to waiting in a standard queue environment, as opposed to your diagnosis. You shouldn't have to go into detail, but explain simply. DAS may or may have been granted for your needs in the past, but if you never requested it you won't know.

    It is always good to have a "plan B" in case DAS is not given.

    The scissors should not be a problem at WDW. They may be an issue with TSA. Keep any supplies related to your medical needs in a "medical bag" so it's clear that the scissors are for those needs. I suggest checking the TSA website which is pretty good. I know small child-size scissors are allowed, but I'm not sure if if that's because of size or bluntness.

    I suggest packing your supply bag using clear zipper baggies. It will keep everything organized and clean, and make it easier for the WDW security screeners to see through the bag. They may or may not poke (thus the zipper bags help keep items from being directly touched). I would think this could help with TSA as well.

    Enjoy your vacation!
     
  • lookame

    DIS Veteran
    Joined
    Aug 21, 2011
    As a reminder... each individual must determine wording of a request for DAS based on his/her own needs. Please do not post "say this..."
    I understand no one can say for sure wether I would get the DAS which is why I wasn’t asking if I would be given one or not. I was asking if I were given one if all rides are off limits while I am waiting for my return time. I didn’t want people to focus on my question about DAS and yet everyone seems only focused on that one question. It’s also incredibly frustrating when I receive uneducated answers telling me to plan potty breaks when that’s not really possible (that comment came off as pretty rude to me. I’ve been told that multiple times but timing just isn’t possible.) I’m still adjusting to having this and doing things in public. I’ve had to go home due to issues with the bag and I want to avoid that as much as possible while on vacation and if I go and the cm decides I’m not eligible for the DAS then so be it but I’m tired of people telling me to essentially do something which is physically impossible for me to do. Which again is why I didn’t ask anyone if I’m eligible for one (just that I understood I *might* be but nowhere did I ask Can I get a DAS)
     

    lanejudy

    Moderator
    Moderator
    Joined
    Oct 27, 2011
    I was asking if I were given one if all rides are off limits while I am waiting for my return time.
    You may ride other attractions, eat a meal, see a show, take a break or whatever your choose to do while waiting for a DAS return time. It is highly recommended to plan out your 3 FP+ each day as well, and use FP+ and DAS in combination to help keep out of long queues.

    (and the post you quoted wasn't directed at you ;))

    Enjoy your vacation!
     

    chicagoshannon

    DIS Veteran
    Joined
    May 9, 2008
    1. I think I"d go to Disneyland in your case. The rides are much closer together so you might be able to fit more in, between needing to go to the restroom/wait for DAS times.

    2. TSA will probably want to pat you down. My sister gets patted down almost every time she goes through security. She packs all of her supplies in her carry on and hasn't had a problem with them yet (been dealing with it for 8 years)

    3. She doesn't have the same bag system as you but does bring extra bags for swimming just in case. She hasn't had too many problems and doesn't tape it up extra. However she has a bag for #1 not #2 so if hers leaks it's not as big of a health issue. She hasn't had a leak yet though.

    4. security might rummage through your things. Really just depends on luck of the draw. You never know how handsy they'll be with your bags. I've had some barely look and others that seem to be looking fora hidden piece of gold.

    I think over the next year you'll get a better idea of how your bag will act and you'll be more used to everything.
     

    Disneyfan754321

    DIS Veteran
    Joined
    Feb 19, 2019
    Swimming, i dont know what your wrap looks like but my son has one that is made for swimming, google it see if yours will work. We dont have to do anything special. If you dont wrap it down it trys to float up, or the adhesive comes off
     
  • kaytieeldr

    Post hoc, ergo propter hoc
    Joined
    Jun 11, 2005
    understand no one can say for sure wether I would get the DAS which is why I wasn’t asking if I would be given one or not.
    I'm just reading this thread for the first time at almost 11 Eastern time - but I have a feeling @lanejudy might have edited or removed some posts and her comment was addressed at those posters..
     

    tsumgirl

    Mouseketeer
    Joined
    Jul 27, 2019
    i had surgery recently and now have an ileostomy. I have a few questions (even though I’ll be going next year)
    1) I wear cut to fit baseplates when security checks my emergency supplies (which has a few full changes including baseplates and bags) will my dull scissors be allowed in?
    2) will they rummage through my supply case or will they look and see it’s ostomy supplies and be satisfied (I keep it pretty well packed and it’d suck to have to reorganize it)?
    3) I understand I wouldmaybe qualify for a DAS so I could empty my bag before I go on a ride (so I wait outside the line) would I be able to go on a ride which the line is short while I wait for my return time? This is for my kids and if I’m confident in my bag- I am also not asking if I DO or DO NOT qualify-There’s a lot of focus on me getting a DAS period, that was not my question. Not only that but there are several reasons why the DAS would be helpful in my situation-my bags pop, my bag fill quickly and without notice so emptying before waiting in a long line won’t always work, I still have my colon with active disease and urgency issues with that. Please don’t give me uneducated answers about a question I didn’t even ask and certainly do not tell me to time my “potty breaks” I have an ileostomy and there is no “timing” and having active disease in my colon, again there’s no “timing” thanks
    4) swimming with an ostomy (as a general question) do I need to tape down my edges or do anything special to prevent leaks? Change out my 2 piece to a one piece while swimming then back to my 2 piece after?(I feel like thatd be rough on my skin though, maybe I should tape around the rings?)
    5)any tips for doing Disney or flying with an ostomy? Right now I’m in a 2 piece but I wear a one piece sometimes.
    6) do I need to show tsa my ostomy supplies with my small travel scissors or can I keep those in my personal item? (ATM I used rings and no paste but I do use stoma powder and barrier spray)

    Thanks for your answers. I’ve dealt with crohns for 10 years and thankfully have been in symptomatic remission everytime we’ve done Disney so I haven’t used the DAS but it’d suck if I waited in line, my bag filled and I had a massive blowout while on a ride. I wear ostomy wraps from Ostomysecrets so that helps keep the bag supported. Thanks everyone!

    *we aren’t sure yet if we’re doing Disneyland or disneyworld so if there are differences between the two please point those out*
    I don't have personal experience with your situation, but I did take care of my grandmother who had similar issues to your own, so I'll do my best to address your concerns. Also, I've only been to Disneyland, so my advice may not apply at WDW.

    1. I don't think the dull scissors will be an issue. As long as they are kept with your medical supplies, you can just let them know it is needed for medical reasons if they question it.

    2. Some will look through the bag and others may just feel for dangerous/prohibited objects. If there are any items you'd prefer they not handle directly, I'd advise placing them in clear bags where each item is easily visible. They do sometimes have to see around items using a flashlight if the bag is too deep or too tightly packed. I have had situations where I've had to reorganize my bag after a thorough search and other times where it was hardly disturbed. It does vary. Also, if any of your supplies are in zipped pouches they cannot see through, you may be asked to open these pouches as well, so again placing things in clear bags will save you time and hassle.

    3. If you do qualify for DAS, you are free to do anything while waiting, including other rides, obtaining FPs, or seeing shows. There is no time limit to return to the ride, so you can come back anytime after your return time, even hours later. I have at times needed to leave the park, because I wasn't feeling well. After resting, I would return to the park at night, and use my DAS return time.

    4. I don't have any experience with swimming, but I would imagine you'd want to secure the bags to your person as much as possible. There are probably newer and better products since my grandma was around, but aside from just floating, a bag with gas may pull at the adhesives. Also, I'd be concerned about preventing rashes if her adhesives had gotten wet, or the skin had gotten damp. Rashes were always our worst nightmare, because they were painful for her. Anytime that area got wet, we would do a full air dry and change of bags. I googled the base plates you mentioned and they seem similar to what I recall, so I would plan to do a full change out after swimming.

    5&6. When flying, I'd probably pull any questionable items out and place them in a clear bag in the trays (powders, liquids, creams, sharp objects). I do this anyway without medical supplies, because it just makes the process smoother and faster, and lessens the likelihood of them searching my entire bag. Regarding pat downs, this will most likely be required, but if you are shy or would just prefer privacy, just tell the TSA agent you would prefer a private pat down, and they will take you to a separate room where people will not be watching. The body scanner was before my grandma's time, but I know a TSA agent, and she said the pat down is usually as non-invasive as possible, but they could possibly ask to see the bags if they are full, and the external pat down isn't enough to determine that there is no danger. It doesn't happen often, but I just wanted to mention it so you're mentally/emotionally prepared in case it does. I'm not familiar with the difference between a 2 piece and a one piece, so I'm not sure if there would be additional factors in that respect.

    While you're speaking with Guest Services about a DAS, ask them at the same time to circle all the available companion restroom locations on a map. The sink access will probably make it easier to do what you need to do quickly and in privacy.

    I do sympathize with your dilemma. My grandma sometimes needed to empty every 15 min if she was eating different foods she wasn't used to, or she was just stressed out. She was going through chemo during the time I was with her, which made things even more unpredictable. Feel free to ask any DL specific questions you may have, and I'll be happy to contribute what I can.
     

    walle735

    Earning My Ears
    Joined
    Aug 8, 2017
    Hi, I had a colostomy last year and did trips to both Disneyland and Disney World with it before it was reversed.

    1. I had mine and it was never an issue. A few security guards opened my case of supplies and I just explained that they were medical supplies and they were fine.

    2. I think one time a security guard was very thorough and rummaged through everything, but other than that, they looked at my case and put it back.

    3. I don't know the exact DAS rules - all you can do is explain your situation to the cast members and see what they say. I will say that I felt that all the cast members were very helpful and understanding. I was even told that they have ostomy supplies at first aid. That was another good tip - there are more private/larger rest rooms at first aid and the baby care centers. Definitely easier to empty/deal with things.

    4. My nephew convinced me to go swimming with him, something I thought I would never do! I had a two piece system, and for my own piece of mind I used these Brava elastic Barrier Strips, curved that I had received as part of the many samples from my ostomy nurse. I had no issues, and definitely would recommend not switching out the base plate as much as possible because that caused a lot of irritation for me. I really loved the Adapt adhesive remover spray to help with changing the whole system.

    5. I have pre check, so I didn't have to go through the body scanners - I feel like I've read that more people have issues after that. One time (out of eight flights I went on) TSA questioned my mini scissors, and I just explained I needed them to cut my ostomy barriers and they let me through.

    Please let me know if you have any other questions I can help with.
     
    Last edited:

    lookame

    DIS Veteran
    Joined
    Aug 21, 2011
    While you're speaking with Guest Services about a DAS, ask them at the same time to circle all the available companion restroom locations on a map. The sink access will probably make it easier to do what you need to do quickly and in privacy.
    3. I don't know the exact DAS rules - all you can do is explain your situation to the cast members and see what they say. I will say that I felt that all the cast members were very helpful and understanding. I was even told that they have ostomy supplies at first aid. That was another good tip - there are more private/larger rest rooms at first aid and the baby care centers. Definitely easier to empty/deal with things.
    Thank you both for these tips! That is really cool that first aid has some ostomy supplies for those moments which you don’t have everything you need!

    When you’d go to the parks, hoe many bag changes would you take and how many “just in case” changes of clothes?
     

    tsumgirl

    Mouseketeer
    Joined
    Jul 27, 2019
    Thank you both for these tips! That is really cool that first aid has some ostomy supplies for those moments which you don’t have everything you need!

    When you’d go to the parks, hoe many bag changes would you take and how many “just in case” changes of clothes?
    I think we only ever carried 1 set of bag change supplies and 1 set of clothes when we took my grandma out. If you plan to do park open to close, you could bring more for piece of mind, but it may not be necessary.
     

    seashoreCM

    All around nice guy.
    Joined
    Aug 25, 2001
    Would it be fair to be required to experiment in advance with different diets and food items to see how much in what quantities you can take without filling the bag too rapidly?

    I experimented a little, notably on how much water I drank and when, to maximize the time between rest room visits for "number one." Disney made me much more hot and sweaty this past August compared with back at home and I was pleasantly surprised I could drink a little more water and go a little longer between rest room visits at Disney than I first thought.
     

    tsumgirl

    Mouseketeer
    Joined
    Jul 27, 2019
    Would it be fair to be required to experiment in advance with different diets and food items to see how much in what quantities you can take without filling the bag too rapidly?

    I experimented a little, notably on how much water I drank and when, to maximize the time between rest room visits for "number one." Disney made me much more hot and sweaty this past August compared with back at home and I was pleasantly surprised I could drink a little more water and go a little longer between rest room visits at Disney than I first thought.
    My grandma had it for #1 & #2. #1 is definitely much easier to manage and empty. It doesn't quite work that way for #2. I don't want to go into too much detail, but if we use chicken nuggets as an example, my grandma could eat them from Wendy's. We found out the hard way that the McDonald's ones did not agree with her. (Before people jump on this, she didn't normally have a fast food diet. Her doctor was 2 hrs away and the rest of us always wanted a snack break on the way to or from there. It'd be mean not to let her have something too.)

    So experimenting ahead of time wouldn't necessarily help the OP, especially if this is is a recent lifestyle change. There's no way for the OP to know in advance what combination of ingredients Disney might use in their food that might trigger him/her. Even a food that just made a normal person gassy could be an emergency situation for the OP to need the facilities.
     

    lookame

    DIS Veteran
    Joined
    Aug 21, 2011
    Would it be fair to be required to experiment in advance with different diets and food items to see how much in what quantities you can take without filling the bag too rapidly?

    I experimented a little, notably on how much water I drank and when, to maximize the time between rest room visits for "number one." Disney made me much more hot and sweaty this past August compared with back at home and I was pleasantly surprised I could drink a little more water and go a little longer between rest room visits at Disney than I first thought.
    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. :)
     

    gap2368

    DIS Veteran
    Joined
    Feb 27, 2015
    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. :)
    Not sure if anyone has said this or not but first aid will hold extra medical stuff for you. Incase you want to bring extra and leave a bag at first aid
     


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