Managing an Ileostomy in NYC - Tips for Finding Restrooms

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, specifically 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. It's ridiculous! 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!

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 

Hard Times,

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 sightseeing 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

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.

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!

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hard Times,

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 peace of mind, the restroom locator app as suggested by another here, is your best bet.

X_

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

Hi Bill. I'm in the UK and have an ileostomy. I had a card when I was a member of the Crohn's 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

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 restaurants....walk in as if you're registered there...the larger chains are a good bet...good luck.

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 

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 a while find that it does not really inhibit your life.

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 at night and the few that were open wouldn't let me in even if I bought something! It was ridiculous. 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 don't have normal functioning 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 accepting it, though, unfortunately.

Bathrooms are scarce. Plan ahead. If you're visiting tourist traps, they have facilities. Even delis 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. :)

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 because 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

Hello lavern.

I used to go to New Zealand every year when most of my family were living there. However, since most of them have died, my daughter has been visiting us in the UK. In March 2018 I'm going there again to visit her and all our friends, plus do a lot of nature watching. Not looking forward to the long haul flight but I know it will be worth it once we've landed .

Best wishes

Bill 

Hi Bill

I know what you mean about the "long haul flight," but once you are in NZ, it is well worth the time. Last year, the longest non-stop flight from Auckland now goes to Houston, Texas. In my mind, that means NY to NZ non-stop can't be too far away? Non-stop would make the flying experience much more tolerable... especially having an ileostomy!!

I wonder what kind of special prep you will be planning for the many hours in the air? I have flown now up to seven hours with no problems, but I'm very careful about food, etc.

What are you doing (if anything at all?)

I'm sure your trip to NZ will be fantastic!

My daughter has lived in Wellington for almost ten years, and she is a kiwi for life!!!

Take good care

Lavern

Sent from my iPhone

Hello Lavern.

Prior to my stoma, I used to fly to NZ almost every year to see my family and avoid the UK winter. Most of my family are now dead or moved so I now only have my daughter over there in Dunedin. As we are at the farthest point from our destination, the trip used to take me anywhere between 30 to 50 hours door to door. If I went on my own, I would fly direct, which meant two flights of about 10 -11 hours each plus all the faffing about at airports and the dreaded pause while they refuelled the plane. I used to fly via the USA but the airport staff were so horrible that I decided to fly the other way round - and what a contrast! Such friendly people in Hong Kong and Singapore.

This will be the first time I've flown since having the stoma, so who knows how I will get on. We felt that we are too old to make the long-haul flight in one go, so we are stopping over for a couple of nights in Hong Kong both there and back, which hopefully, will give us sufficient respite to enjoy the trip a bit more.

On previous trips, I always sat in an aisle seat near the toilets because of my incontinence. However, since those days I am now also reliant on a breathing machine, which will mean having to sit in whatever seat has the necessary electrical connection. Apparently, we can take all our medical equipment on the plane as hand luggage so it should not pose much of a problem and I am usually able to sleep sitting upright. Unfortunately, my wife has great difficulty with these flights and can hardly sleep at all so, if we sit together, it can result in her wishing to converse whilst I wish to sleep. I don't know how this will work out as, on previous occasions, she has travelled in business class, whilst I was in 'cattle' class and it worked out quite well for both of us.

Anyway! this trip is mainly to see family and friends, as well as doing some nature watching so once we are there, we expect to enjoy ourselves and make all the travelling seem worthwhile.

My daughter has been over there for more than 20 years and is a naturalised citizen, with no intentions of returning to the UK - except for holidays.

I would have loved to have emigrated there some years ago and I bought land to build houses on in preparation to make a living. Unfortunately, ( or fortunately- depending on your viewpoint) My other daughter in the UK had children and my wife did not want to miss out on being a grandmother, so the emmigration never materialised and I eventually sold the land and we remained in the UK.

As for preparation, I tend to take what I would have at home and sort out any problems as I go along. What I have found is that worrying about these things is often a major factor in triggering them to happen. I try not to worry and take everything in my stride as there is essentially no difference between it happening while I'm away or when I'm at home. It still has to be dealt with. So many of the things people worry about - never happen. so why spoil a trip with worry?

Best wishes

Bill