Colostomy Concerns

[Christine]

One of the members of our group has a colostomy bag. She's had it for almost a year and has been extremely self-conscious about it. It kind of runs her life. She will be with us in the parks (using ECV due to mobility issues and tiredness from chemo). One of her concerns is having to empty/change her bag in a public restroom.

We've tried to tell her that this is really no different than just having to "go" normally, but I think the fact that she has to handle it and it's up closer to her face makes her believe that the smell is awful and everyone is bothered. This is not the case, but it is how she feels.

I was wondering if she would be able to use the First Aid or Baby Care stations to have a more private place to do this should it be required while we are in the park? I never been in either one of these places to know if there is a private bathroom.

 

[StitchesGr8Fan]

First aid - yes. Baby’s care - probably not.

 

[lanejudy]

Agree - definitely First Aid, but probably not the Baby Care Center. She could also use the “companion” restrooms which offer a little more privacy; just be aware there could be a wait for one.

Enjoy your vacation!

 

[Mrsjvb]

I suggest using the companion restrooms. private..and much larger so she won't be forced into trying to change it out in a teeny tiny confined space.

 

[Christine]

Thanks everyone. Not sure if I've ever even noticed these!

 

[mamabunny]

Thanks everyone. Not sure if I've ever even noticed these!

They are marked on all of the maps - in the My Disney Experience app, as well as on the paper maps you can grab at the front of the Parks!

 

[SueM in MN]

Just be aware that there might be a wait to use the Companion restrooms.
The people with special needs using them might have to do things that take a while, so there can be a line.
Families also use them - often with multiple children. Most people are nice, but be prepared for occasional rudeness from families who think the Companion restrooms are only for families. (They are called Companion Restrooms, not Family Restrooms for a reason).

Most of the newer or renovated restrooms have large handicapped stalls with a sink.

When using First Aid, she will need to check in at the desk. That sounds intimidating, but it really isn’t. The staff at a First Aid just need to know what you need so they can assign a room or what you need. All she needs to do is let them know she needs to use their private restroom and they will direct her where to go. We often use their restroom and get to see the same staff multiple times; they are great.
First Aid also asks you to sign their log book - it’s just so they have a count of people using First Aid.

 

[Christine]

Just be aware that there might be a wait to use the Companion restrooms.
The people with special needs using them might have to do things that take a while, so there can be a line.
Families also use them - often with multiple children. Most people are nice, but be prepared for occasional rudeness from families who think the Companion restrooms are only for families. (They are called Companion Restrooms, not Family Restrooms for a reason).

Most of the newer or renovated restrooms have large handicapped stalls with a sink.

When using First Aid, she will need to check in at the desk. That sounds intimidating, but it really isn’t. The staff at a First Aid just need to know what you need so they can assign a room or what you need. All she needs to do is let them know she needs to use their private restroom and they will direct her where to go. We often use their restroom and get to see the same staff multiple times; they are great.
First Aid also asks you to sign their log book - it’s just so they have a count of people using First Aid.

Thanks for the info. She doesn't need to use a private restroom each time, thankfully, but at least once a day (and she doesn't know when that will be), nature calls and her bag gets full. This is where she needs some privacy and a sink and some room to move around, empty the bag, clean it, and reapply to her waist. The First Aid place sounds like a good place.

 

[CoolDisneyCat]

As far as odor is concerned... my ex had a bag and got little bottle of drops that you put in the toilet and the odor is then trapped. He got them from the company where he got his supplies. I’ve seen similar products on Amazon.

 

[lookame]

Hi there! I have an ileostomy (it’s different in that I have output more frequently and it’s typically “looser”) but it’s the same in that I have a bag that needs changed and emptied and such. I haven’t done Disney with mine but I have emptied in public.

I carry a pouch full of supplies-three complete bag changes, a small mirror, small scissors, measure guide, flange extenders, stoma powder and barrier wipes. It also has plastic ziplock baggies, dog poop baggies and some paper towels as well as wet ones. The bags I can put the used bags in and seal and dispose of which helps trap the orders.

There’s lubricating and deodorizer drops which she can use in her bags to help drain the contents and lessen the “stink.”

She can find travel sized bottles of pooporri which 3 sprays in the toliet bowl before emptying helps with the stink as well.

The other tips about companion and first aid and handicap bathrooms are all great. She also doesn’t need to be embarrassed about her colostomy.

 

[lookame]

Oh someone also said that first aid has ostomy supplies should she have a particularly bad day with leaks and have gone through all her changes. Someone else also told me that first aid will also hold supplies should she rather pack a bag with supplies and would rather keep it in a safe place instead of carrying it around.

 

[Christine]

@lookame, thanks for your input. I did find your other thread a few days ago and it was very helpful. Our trip is in just under 3 weeks. I think my aunt is most nervous now about flying/TSA etc. She hasn't flown in SO long and the stress of the health issues has her nervous. We have an extremely early flight so I hope that helps with crowds and TSA when we head out.

 

[SueM in MN]

Oh someone also said that first aid has ostomy supplies should she have a particularly bad day with leaks and have gone through all her changes. Someone else also told me that first aid will also hold supplies should she rather pack a bag with supplies and would rather keep it in a safe place instead of carrying it around.

Many people have reported having First Aid store medical supplies for them. Worst case scenario is that they say it’s not possible and you need to carry the supplies.
If you plan to store some supplies, I would suggest keeping one set of supplies with you and storing the rest in First Aid.
I have not heard of First Aid having An emergency supply of ostomy supplies, but it would not totally surprise me if they did. If they do, be prepared that they are probably pretty ‘generic’ to be of use to the most people.

@lookame, thanks for your input. I did find your other thread a few days ago and it was very helpful. Our trip is in just under 3 weeks. I think my aunt is most nervous now about flying/TSA etc. She hasn't flown in SO long and the stress of the health issues has her nervous. We have an extremely early flight so I hope that helps with crowds and TSA when we head out.

TSA has a fairly new program called TSA Cares that I think would be useful to her.
This website talks more about it.
https://www.tsa.gov/travel/passenger-support

 

[gap2368]

Oh someone also said that first aid has ostomy supplies should she have a particularly bad day with leaks and have gone through all her changes. Someone else also told me that first aid will also hold supplies should she rather pack a bag with supplies and would rather keep it in a safe place instead of carrying it around.

I do not think they have any extra surpluses but they will hold your things. You will have to fill out an extra form on basics what it is and who can pick it up you have to sign the form each time you bring it in and take it out also one of the nurses has to sign it too. Dose not take long as long as you keep the paper from the first day.

 

[lookame]

I do not think they have any extra surpluses but they will hold your things. You will have to fill out an extra form on basics what it is and who can pick it up you have to sign the form each time you bring it in and take it out also one of the nurses has to sign it too. Dose not take long as long as you keep the paper from the first day.

Oh I’m not sure if they have extra supplies or not, someone mentioned it to me but idk if they really do or not. It’d be cool if they did have some though, but everyone has different needs and supplies that work for them. I wouldn’t count on first aid having supplies (so don’t come with nothing) but it wouldn’t hurt to ask should she have a bad day which all her backup supplies fail her. If push comes to shove, she and another person could go back to the room.

Don’t leave spare supplies in the car. If she uses a 2 piece system the bags may be ok in the car and maybe stoma powder, however, anything which has an adhesive with it (wafers, flange extenders, barrier sprays, ect) could heat up and cause them to fail when she goes to use them.

 

[seashoreCM]

Does a bag have a reliable resealable vent to let out air and flatulence without having to change the whole thing?

(You probably already know this) Powder or a powdered surface will ruin the adhesive.

(You might or might not know this) (copied from another forum) Some rides have restraints or cushions that might hit or squash the bag (Flight of Passage comes to my mind; there is a narrow cushion that touches you from your groin to your breastbone). You might have to chicken out from a ride because of this.

 

[Louise Potts]

Hi all, i know this is a very late reply to this thread but i just wanted to say hi, i have had an ilesotomy since i was 9 years old, i have been to WDW loads of times, my top tip is going to guest services to get the disability access enabled on your park tickets to get you an extra fast pass per day, waiting in lines with a full bag is not fun, i use the regular toilet unless i need to change my bag which then becomes awkward as a sink is needed, i also need a locker when i go to the water parks as my spare supplies just melt in the sun in my beach bag, ride belts can be a bit uncomfortable too but other than this i have had no problem, p.s a product called na'scent that is a liquid dropped into the bag eliminates odour, i only discovered it a few years ago after having my ileostomy 25 years!