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Welcome to MeetAnOstoMate
The best place to meet and talk to other OstoMates with 17,427 Members.

Getting around NYC w/ an ileostomy...

Posted: Wed Nov 15, 2017 4:06 pm

Hello!

This is my first post on this site. One of the things I was curious about, and am hoping people have real experience and tips for, is how to manage with an ileostomy and traveling, specificaly in New York City? I fear this ileostomy will be permanent for me, and am struggling with a lot of the things this means for me as a young adult woman. As I am figuring things out and trying to stay positive, one of the things I am at a loss for especially is the practical side of it: if you have been to NYC, and know about it, then you know how unbelievably hard it is to find a restroom. Its rediculous! I remember the last time I was there before I had this surgery and it was hard enough just finding one to go for normal reasons. Now that I have an ileostomy, it is even harder because of the frequency I will need to go (there's only so much additional fiber, imodium and changes in diet can do to reduce the input amount, after all.) I'd like to hear from others how they get around this very irritating issue, or if they don't, how they stay sane and manage to still have fun and go out. Tell me your thoughts! 

Posted: Thu Nov 16, 2017 2:50 am

Hello HardTimes. 

 Thanks for your post as it highlights a problem that many people have throughout the world. Here in the UK they issue a key to enable people to get access to loos for the disabled. The problem is - finding those facilities when you need them most. Nowadays I irrigate so I don't have that problem anymore. However, when I had the bag,  I found that most large stores and filling stations have toilets that are easily accessible, even if they are not entirely suitable. I have reconnoitered most of them in my area and now know where the best of them are so that if I ever needed them I would not need to be in a last-minute panic. I also carry a travel card which indicates that I have a condition that warrants needing to access a tiolet in an emergency. This can be very useful if someone (like security officers) question why you are using the facilities for disabled people, when you don't show the outward signs of being disabled.

PS: my comments are born out of some bitter personal experiences.

Best wishes

Bill 

Posted: Thu Nov 16, 2017 11:10 am

HardTimes,

 

  Welcome to the site!  I work in NYC all the time and yes, bathrooms in the city are few and far between.  But having an ileostomy doesn't prevent me from finding one.  Most of the sites I work at in NYC have facilities so I don't worry too much.

  But if you're site seeing and all that, finding a restroom can be a pain as you've stated.  There is an app called "Got to Go" that you can download, but there are several apps you can use.  Just go to the app store and do a search for "restroom" locator.

  Hope this helps.

 

Bain

Posted: Thu Nov 16, 2017 11:51 am

NJ Bain,

 

Thanks so much for the suggestion, I will definitely download that! I will probably be moving there temporarily if not indefinitely, and so I was posing this question in the instances I am outside of work and where I live, but just walking around downtown and such. This makes me feel more hopeful I can get around this issue.

Posted: Thu Nov 16, 2017 11:52 am

Bill,

 

Good to know I'm not alone here -- the travel card seems like a great idea. I will look into what is involved to get one, thanks!

Posted: Sun Nov 19, 2017 12:11 am

HardTimes,

 

I have lived in NYC my whole life, 38 years with an ileostomy. As you have indicated, it's not an "ostomy friendly" place. For a visitor, it is a bit more friendly as bathrooms are readily available in museums, concert halls and even parks, but since you indicate that you would be here on a more permanent basis, it does pose a greater inconvenience. I have found that pretty much all department stores and supermarkets have restrooms and on the occasion that I become desperate, I have made use of the various fast food places where you often don't have to buy something in order to use the facilities. In the end, and for your piece of mind, the restroom locator app as suggested by another here, is your best bet.

 

X_

Posted: Mon Nov 20, 2017 12:43 pm

One thing you might consider are the charcoal packets you can put in your bag (Diamonds) that will absorb the liquid output into a somewhat gel like substance which will extend the time between empties.  (They also absorb gas).  There are also disposable liners you can use for your bag that will allow you to take that out and reattach your bag and that will facilitate a "quicker" method when in more of a hurry than usual.  

These are just a couple of things and the app NJ Bain indicated is great ... I am definitely going to find one and download it as I travel quite a bit for leisure and am always out sightseeing.  

Paula

Posted: Mon Nov 20, 2017 1:23 pm

Hi Bill. I'm in the UK and have an ileostomy. I had a card when I was a member of the Crohns and Colitis Association which informed people of an urgency. Do you have a card that is different that I can get to show people why I am using the radar key!

 

Thanks

Posted: Mon Nov 20, 2017 3:20 pm

I hate using public toilets....your best bet is to use the facilities that you can find in the lobbies of hotels...far better than resturants....walk in as if you’re registered there...the larger chains are a good bet...good luck.

Posted: Mon Nov 20, 2017 5:07 pm
eiZeffo wrote:

Hi Bill. I'm in the UK and have an ileostomy. I had a card when I was a member of the Crohns and Colitis Association which informed people of an urgency. Do you have a card that is different that I can get to show people why I am using the radar key!

 

Thanks


Hello Zeffo.

Yes! I use one that I got from DANSAC. It is the same size and design as a credit card and was concieved for travelling but it is just as relevant for everyday use as well. There are other ones, from different manufacturers and suppliers but I like the Dansac version because it is bright orange and the message  seems somehow more urgent. I'm sure if you were to contact them they would be obliging and send you one.

Best wishes

Bill 

Posted: Mon Nov 20, 2017 8:04 pm

I go to NYC all the time and have never had a problem.

 

A hotel lobby is the best bet.  The larger (and therefore more anonymous) the better, and high end means really nice bathrooms.  If the hotel has a conference room area, there are extra bathrooms there designed for public use (conference attendees), so it is no problem to use those.

 

Next would be museums, which have generally improved their bathroom facilities and dining areas lately.  Over time you can figure out which ones are easily accessed without having to pay to get into the actual museum.

 

Large eating establishments with multiple outlets, like Whole Foods Columbus Circle or Eataly are usually very clean with easily accessed and anonymous bathrooms.

 

Department stores are good, but they often make them a little hard to find.

 

McDonald's and Starbucks are all over, but because of crowds and maybe wanting you to buy something, aren't always great.

 

Also, if you use the empty when 1/3 full rule, you'll avoid any critical situations.

 

Over time it seems like my output, while not necessarily predictable, doesn't give me any surprises.  Don't worry if your ostomy becomes permanent.  Typically issues are mostly expressed by newbies, and those of us who have had an ostomy for awhile find that it does not really inhibit your life.

Posted: Tue Nov 21, 2017 9:49 am

Thanks for the long comment, BiGal. I had some experiences in NYC the last time I visited in the downtown area which were awful bathroom-wise because there were virtually none around because it was later in at night and the few that were open wouldn't let me in even if I bought something! It was rediculous. It wasn't a super touristy area so there weren't any museums/departments there and they wouldn't be open then anyhow. I know some of the issues are "newbie", but some will persist, as we dont have normal funtioning like others do in able to wait and control the ability to go. Also, going out later (as I want to do when I'm young) is virtually impossible because of the issue I just explained. If it becomes permanent I will have to modify my life in myriad other ways too, which sucks. I don't have any choice in acepting it, though, unfortunately. 

Posted: Tue Nov 21, 2017 1:56 pm

Bathrooms are scarce. Plan ahead.  If your visiting tourist traps.  They have a facility. Even deli's have B-rooms.  You just need to buy a coffee to get the access code for the b-room. Do not be discouraged.  Go to NYC. Enjoy yourself. Smile 

Posted: Sat Dec 16, 2017 7:44 am

You already got some great suggestions. 

I just want to make sure that you never let your ileostomy prevent you from living your life to the fullest!

i visit NYC regularly bc I love seeing Broadway plays and Ranger hockey games.  Saw Andrea Bocelli and a play on the same day last week! (And out for dinner too).  That took planning but I knew I could do it!! 👍

i have a permanent ileostomy since May 2014 and I did not stop living!!   I take Vacations (airplane and cruises etc).   My next goal is to visit my daughter in New Zealand again.  I’ve been there several times and going back

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