No mention of an Ileostomy as a disability to take into account

[metcalfe]

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I have an Ileostomy which is similar to a Colostomy but I have had all the colon removed so I have a bag attached to my stomach to collect waste form the small intestine. In hot weather I need to drink alot to not become quickly dehydrated, this causes a problem with the bag. I need to find toilets all the time to empty it as it will only hold a certain amount of liquid, the heat sometimes causes the bag not to stick to my skin therefore needing a toilet immediately or the contents will be leaking out onto me. If I need to change the bag this is time consuming and not guaranteed to last a long while before I need to attend to it again. I am travelling with my 3 children and am afraid that I will either not be able to queue for an hour at a time or indeed have to leave the line to find toilets. I feel I am at a dissadvantage as there does not seem to be any concessions for myself as Iam able to walk. The only place Iwill be walking to are the toilets! Please can somebody advice as what to do.

 

[roseprincess]

Hi and welcome to the disABILITIES boards!

I would say having an Ileostomy is a disability.
If you are traveling to WDW, ask for a GAC (Guest Assistance Card). You would ask for the GAC at Guest Services at any of the 4 Disney theme parks. You tell the CM at Guest Services you cannot wait in line that long because of the ileostomy, that you have to empty your contents into the bathroom frequently. The GAC serves the purpose of not waiting in line as long. You would need to show the CM at each attraction your GAC card. Then they will direct you to move up in line or go in thru the exit.

Also, make sure you pack enough of your supplies with on your trip and also to the parks.
I have worked with the elderly at nursing homes that have had colostomies/ileostomies. I have emptied them and changed their bags, etc. I am a nurse, but haven't worked in years. I know how messy it can be to empty and change bags.

As of the Disney parks, there are First Aid stations near the front of each park and lockers, also. I have read on these boards that there are nurses on staff at each of these First Aid stations.

Sue MN, the DIS board moderator on this board might be able to chime in if she has any other info to share.

I hope this helps. Best wishes to you.


Rosemarie

 

[SueM in MN]

The GAC is not meant to shorten or eliminate your wait in line (it says that on the GAC), but there will still be help for you. As roseprincess mentioned, go to Guest Services in any of the parks and explain your needs and they will try to come up with some accomidation for you. The GAC you get at one park is good at all the theme parks, so you don't have to get one at each park.
If you are able to go to the parks early in the day, you can get on a lot of rides with very little wait, so that is one helpful piece of advice. My DH has done this with my oldest DD, niece and nephew even at Easter and been able to get on most of the rides in Fantasyland without more than a 10 minute wait (Easter is very busy). DH and I have also done it in July (also a busy time).
I have to get to bed now, so I'll write more later.

 

[dandee00]

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have to leave the line to find toilets. I feel I am at a dissadvantage as there does not seem to be any concessions for myself as Iam able to walk. The only place Iwill be walking to are the toilets! Please can somebody advice as what to do.

Metcalfe: I feel for you. I have IBD and still have my "parts". When I am in a flare, I know where every bathroom is. However, I don't know when I am going to need one or how long I'll need it for. So, I have also been concerned with the lines and my need for a bathroom at an inconvenient time. I am hoping Guest Services will be able to help. I am also hoping I'll be able to get through this with the least amount of embarrassment. Many times in my life I have had people say to me "if you're in that bad of shape stay home." If I did that, I'd be living my entire life in my house!
I feel like we are at a disadvantage as well, but I am confident there will be a way for us to work around our "problem". I certainly will not be using my disease as a way to get to the front of a line. But if I have to leave a line, I am hoping when I come back I'll be able to go to the spot where I should have been, as if I hadn't left.
I hope we both have a wonderful trip to the most magical place in the world!!

 

[Schmeck]

Fastpass will help you too!

 

[taximomfor4]

I feel for you!



The GAC is not for shortening wait times, but will still be helpful to you I think. Definitely learn where the bathrooms are, on your map! Be aware of how long the attractions you are entering are. Some of them are very long. Go early in the mornings for sure, and use those fastpasses! With our fastpasses, we were through the fastpass lines within about 15 - 20 minutes and that was the week after Easter. We did a lot of nothing while we were at the parks... sat around, snacked, people watched, saw Cinderellabration and the parades many times! So enjoy yourself!!

 

[metcalfe]

Thanks very much for your understanding. I am still finding it hard living with this and this trip is causing a bit of concern for me, I will try what you suggested.

 

[dclfun]

I can imagine that it's very hard to live with your disability. I have no idea what it's like, of course, but did have a co-worker who prior to her surgery spent lots of time in the bathroom or having an immediate need to get there quickly. I wonder if your physician could help- perhaps there's a different type bag, adhesive, or protective covering "just in case". Also the First Aid stations are wonderful and would have gauze, tape, etc. or a way to even help launder your clothing. This is gross, but one time my PEG tube became disconnected, spilling my stomach contents all over my clothing and chair. I went straight to First Aid, mortified, and they had me cleaned up in no time, giving me a t-shirt and pants to wear while they washed mine. When I went back to retrieve my personal clothing they allowed me to keep what I was currently wearing and made me feel better about the whole misfortune. I think they are used to dealing with just about everything. Kathy

 

[Etoile]

I know very little about Disney or the GAC, and even less about ileostomies, but I would guess that the GAC might permit you to leave the line (or wherever you are waiting) and return to it. You could tell a CM you need to go, how long you will be gone, and possibly if you are there with someone they could hold your spot. Then you can take care of any needs you have and return back without being seen as jumping the queue or losing your place. The only downside I could see would be that if your turn comes while you are gone, you might miss it and have to wait a little longer. But being allowed to go and come back sounds like a perfectly reasonable GAC accommodation to me and I imagine Disney/CMs would agree.

 

[dandee00]

Talking about bathroom stuff can be a bit embarrassing. But you learn to live with it. Thanks to all of you for your kind words. I am looking forward to my trip to Disney. My DH and I are planning to have a wonderful time no matter what! I think the CM's at Disney will be understanding and helpful.

 

[dclfun]

Dee- I hope you have a wonderful trip and please post how things went when you get back. I'll be sprinkling pixie dust for you! Kathy

 

[ducklite]

A dear friend of mine has an ileostomy. Here are a few tips from her:

1. Use the first aid centers to change/empty your pouch. The rest rooms there have sinks along side the toilets, which is much more practical. (I'd add: Some of the handicapped stalls in the restrooms do as well. The baby care centers have companion restrooms with this same feature, and it seems that for your situation there's nothing wrong with utilizing these.)

2. If you have had problems with your pouch becoming seperated from your stoma, speak to your doctor or supply provider, there are new supplies entering the marketplace that have improved abilities to stay in place and not leak.

3. Get to the parks early and ride the rides which will have a long wait as the day progresses. She also suggests that even if you have to wait an hour in line, your bag should still be able to accomodate the output as long as you empty right before getting in line.

Anne

 

[SueM in MN]

1. Use the first aid centers to change/empty your pouch. The rest rooms there have sinks along side the toilets, which is much more practical. (I'd add: Some of the handicapped stalls in the restrooms do as well. The baby care centers have companion restrooms with this same feature, and it seems that for your situation there's nothing wrong with utilizing these.)

The handicapped stalls in the restrooms at AK and MGM are pretty much the type which have a toilet and sink in the stall, along with a large wastebasket.
Most of the handicapped stalls in MK and Epcot are small and don't have a sink.
There are Companion Restrooms in all the parks; where they are located is listed in the Guidebook for Guests with Disabilities for each park (there is a link in one of the posts in the disABILITIES FAQs thread).

 

[dandee00]

Dee- I hope you have a wonderful trip and please post how things went when you get back. I'll be sprinkling pixie dust for you! Kathy

Thanks Kathy. I appreciate the pixie dust. Our trip is in January 2006. I am already planning and packing for our one month magical adventure. We are taking one month because of my disease. IBD (Crohns and Ulcerative Colitis) is not always easy to travel with. Some people suffer more than others, regardless of medication. However, I am trying to make sure I take into consideration rest time, and bathroom time when I am planning fun time in the parks. I'll have every bathroom clearly marked on the park maps. My DH is very use to this and VERY understanding.
Like so many others on this board you learn to live with what you got and make the best of it.
Every day is a gift.

 

[metcalfe]

Thanks Ducklite I had not thought of using the first Aid posts facilities that would cover the embarressment side of having to change or empty the bag in the main toilets and I'm sure the First Aiders would understand my condition. I will talk to my nurse also as today in work I had 2 episodes of my bag leaking it's contents and the second time itdid it went through my skirt onto my white T-shirt. I just sat down and cried. Thanks for your help.

 

[SueM in MN]

The CMs at First Aid will be very nice to you!
I don't know if the nurse you are talking to is a Wound, Ostomy, Continence Nurse, but if not, it would probably be helpful to get a referral to a nurse with that speciality. I work with one and she can do wonders for some people because part of her specialty is knowing what products are out there and which one might work best in a particular situation.
Hope you get things worked out.

 

[ducklite]

Metcalfe-

My friend thought of something else for you--

She suggested that if you are not using an inverted flange that you might want to look into it. This pushes down on your skin to push you stoma out a bit further so you can create a better seal. (I think I've explained it right, she told me over the phone instead of in an e-mail, so I can't cut and paste.) She says it doesn't hurt and it's not at all uncomfortable, and in ten years since her ileostomy, by using an inverted flange she's had exactly two leakage incidents, one she attributed to waiting wayyyy too long to empty and the other she feels was a defective flange or seal.

She says that you can buy a small bottle of air freshener to spray in the stall before removing your bag to help cover any odor, she does this and it's a lot less embarrassing now.

She also says that if it's been some time since your surgery you should make an appointment with an ostomy/wound care nurse as your stoma might have changed in shape since the surgery, and that could be causing some of the leakage issues.

And finally, she says to call or visit the web sites of the manufacturers of ostomy supplies, as they will be happy to send you free samples of different types of supplies to try out.

Anne

 

[metcalfe]

comic sans
I posted a thread on here a few weeks ago asking about advice for travelling to Disney with an Ileostomy. I received some really helpful advice. Now I have had to cancel my holiday due in 5 days time as my 12 year old daughter has been really poorly for 4 weeks. She was admitted to hospital July 7th and after 7 days of tests her results show her to have the same bowel disease that I had to have my Ileostomy for! Thank you everybody for your advice but my attention has now got to be spent on looking after my daughter and hoping that she will not need the same horrible operation some time in the future.

 

[roseprincess]

Sorry to hear about your daughter and cancelling your trip to Disney.
Hope your daughter will get better and not have the surgery.

Prayers and PD to your daughter.


Rosemarie

 

[SueM in MN]

Thanks for letting us know. Sorry to hear about your bad news. Hope your DD is feeling better soon and can stay well.