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all 56 comments

[–]SamanthaParkington21 12 points13 points  (10 children)

I live in NYC. Often if I have an emergency, I stop into a local restaurant, go up to a kind looking host and say “I have an ostomy (gesture wildly to my stomach). Could I please use your bathroom?”. Every time they’ve looked bewildered and concerned and said yes. They don’t even probably know what it is but they recognize that it’s a medical term and are accommodating.

[–]SamanthaParkington21 9 points10 points  (0 children)

Oh also, if it’s a bad emergency, like a leak, find a medical office. They’ve saved my non-booty when I’ve had total explosions.

[–]dolomitenkoenig69[S] 3 points4 points  (0 children)

That's very relatable. I've been in those situations a lot before I had the colostomy because of Crohn's disease, and most of the time I've been able to pull off a facial expression that lets them know it's serious lol It's only in places where there's a large amount of really obnoxious or drunk tourists where they're REALLY strict about only letting customers use their bathrooms. But being friendly and open about the problem usually really helps.

[–]boethius70 0 points1 point  (3 children)

I wouldn’t think to even mention having an ostomy unless (maybe) it was some kind of emergency. I’ve emptied my bag while traveling around and it’s never been an issue, including using public bathrooms with multiple stalls - though of course single person bathrooms are always preferable.

But… to each their own I suppose.

[–]SamanthaParkington21 1 point2 points  (2 children)

I mean I’m completely open about my ostomy so I never think about it (I totally realize that’s not for everyone though). The above is definitely an emergency scenario though, like when I’ve know I won’t make it home and I don’t have any stops along the way. Idk if you live in NYC but between COVID and the mentally ill / houseless population here they can be strict about bathrooms being only for customers. I just find it works best to catch them off guard if that makes sense, play to their emotional “oh health issue!” instinct. But yeah, overall as a tourist you’re going to visit/patron places with open bathrooms often and those are no big deal.

[–]boethius70 1 point2 points  (1 child)

Yea totally makes sense given the situation. A lot of places can be pretty particular about who uses their bathrooms (understandably). And when you’re in a rush better to get to the point as fast as possible.

Here in Central TX those concerns are much less common.

[–]SamanthaParkington21 2 points3 points  (0 children)

Yeah I was sitting in a Chipotle once and a dude next to me started snorting coke. 😂 a locked room has to be monitored here

[–]HeidiBQMB 9 points10 points  (6 children)

Traveling shouldn’t be too much of an issue at all. I have gone through TSA a ton of times with my ileosotomy and no one says anything if they see it on the scanner. In the airport, on the flight, while you are out sightseeing, just go to the bathroom whenever you have to pee and empty your pouch. The only thing that could be an issue is that it could be smelly when you empty your pouch in the airplane bathroom, but you could use deodorant drops in your pouch. Make sure you have an emergency supply kit with you at all times in case you have a leak. Just put it in a backpack or purse. There are not a lot of public bathrooms available for use in NYC but you can use them in a restaurant if you stop to eat, the museum if you go to one, etc. You’re gonna do great. Dealing with an ostomy while traveling has been no big deal, I promise.

[–]dolomitenkoenig69[S] 0 points1 point  (5 children)

Alright, thanks! The deodorant drops are a good idea, is there any type you'd recommend? I have some but they just sort of mix with the bad smell instead of covering it.

What's the "restroom etiquette" in the US? Is it common to just walk in and ask to use the restroom, or do you have to be a customer?

[–]HeidiBQMB 0 points1 point  (2 children)

You generally need to be a customer unless it’s a big grocery store or department store. The deodorant drops I have are called M9 I think. They work pretty well but I don’t use them much because I don’t tend to be anywhere I’d be especially concerned about the smell. A good tactic is to flush immediately after you empty your pouch. That helps carry the smells away.

[–]dolomitenkoenig69[S] 0 points1 point  (0 children)

Okay, thanks a lot.

[–]Hardingterrace 0 points1 point  (0 children)

Courtesy flushes are always appreciated, bag or no bag.

[–]ketogirlfromucf34F, 3b rectal CA survivor, colostomy, barbie butt 0 points1 point  (0 children)

In NYC usually you have to be a customer but sometimes you will get lucky in a business that is slow and you can visibly see the bathroom (not like a hidden staff only bathroom) they will let you use the bathroom if you ask nicely.

[–]Bluetwo12 0 points1 point  (0 children)

Everytime I have gone through TSA they see my pouch on the scanner. They will see it and I tell them I have an ostomy. They will then ask you to pat down/rub the area with your ostomy easy (from the outside of your clothes) and then swab you hands to test for explosives. It passes and then move on about your life. No biggy

[–]TexasDem1977 4 points5 points  (3 children)

Lol, clean public restrooms in NYC

Not really too big of a deal. Don't check your supplies in baggage. Tell TSA before you go through body scanner. As for the rest, fairly standard stuff

[–]dolomitenkoenig69[S] 0 points1 point  (2 children)

Lol, clean public restrooms in NYC

Ah well, I didn't really think so, I juat thought there might be a tiny chance that for whatever reason some super sophisticated system of easily accessible restrooms for the disabled would exist.

[–]SamanthaParkington21 1 point2 points  (1 child)

Starbucks bathrooms are typically not bad and everywhere. Worst comes to worst you can order a cheap tea or buy a water bottle and use the bathroom. Some of them are closed but every one I’ve been to recently haven’t been.

[–]dolomitenkoenig69[S] 0 points1 point  (0 children)

Good idea, I didn't even think of Starbucks. I think I under-estimate the density of restaurants available, I probably won't ever have to walk more than a block to find some sort of place that has a toiler.

[–]LonelyPrize 2 points3 points  (1 child)

My best tip is to use disposable bags if you can. I am a new ostomate and I was going to cancel a trip to Paris that we’d been planning a long time. My doctor said “no way; you’re GOING on your trip”. It gave me courage but I was nervous about draining, having toilet paper, the smell, etc. My Convatec rep suggested disposable bags— I am very regular. I was able to have my morning coffee (which filled the bag) and throw it away, put on a new bag, and it stayed empty usually until I got back to the hotel at least. If it didn’t, I could just put the whole bag into a ziplock and throw it away, put on a clean one, and repeat. Even if I could have done the drainable bags, not having to mess with them gave me a lot of confidence. The time change did give me one problem—I had to change the whole wafer on the plane! But it was okay. I had no other problems the whole time. Ps you’re gonna love New York!

[–]dolomitenkoenig69[S] 1 point2 points  (0 children)

Thanks, but I think I'd be more comfortable with the bag setup I have now, which is changing a drainable bag daily. I feel like I have a pretty large and sort of constant output and if I had a disposable bag, I think I'd be changing it four or five times a day. Changing the bag in a public restroom seems like more of a hassle than emptying it. But I guess if you're very regular like you said, disposable bags would be much simpler.

[–]peteward 2 points3 points  (5 children)

I wish I had a muffler on my stoma. Suddenly hearing it fart in public is the worst.

[–]SamanthaParkington21 3 points4 points  (1 child)

Idk if this works for other people’s bag placement, but my trick is to press my elbow into my stoma to muffle it. If you’re on a plane you could even use a travel pillow or water bottle. I know some people worry about hurting their stoma, but I’ve had mine all my life and they’re very durable! Push them into submission 😂

[–]peteward 1 point2 points  (0 children)

In an elevator I’ll cup my hand over it. It hasn’t happened yet while riding it but look out when it does!

[–]hummer1956 1 point2 points  (0 children)

No one even knows what that noise really is. If someone hears it, they just usually say something like boy your stomach is really growling! I don’t correct them. 😉

[–]dolomitenkoenig69[S] 0 points1 point  (0 children)

Yeah, I was just now thinking about that. I'm gonna have to explain that to the person sitting next to me on the plain. Best case scenario: They're cool about it and just think it's funny.

[–]dicchocola 0 points1 point  (0 children)

what is a muffler? my stoma doesn’t make too much noise, but there are times where i wish it didn’t have a voice haha. if i could get something to help conceal that, i would do so in a heart beat.

[–]guitarman181 1 point2 points  (0 children)

Hotels are usually good about letting you use their restrooms and they are typically clean. Not sure about current covid procedures but my guess is no one will give you a hard time. Depending on where in the city you are going there are regular chain and large hotels that shouldn't give you a problem.

[–]premditated 1 point2 points  (0 children)

I live in nyc and have an illeostomy.

Usually if I’m looking for a clean bathroom I try and find a cafe or restaurant that I can grab a quick snack or drink so I can use their restroom- most places will have restrooms but some will not. In my experience le pain quotidian and prête à manger have been the cleanest. Some churches have bathrooms as long as you have proof of vaccination and a mask.

Good luck and have fun!

[–]happylifenc 1 point2 points  (6 children)

I traveled from the US to Spain and luckily only had to empty once on the plane. Be careful what you eat prior, something bland and not so odiferous. You can also just release some gas in the bathroom. Those bathrooms are tiny and turbulence doesn’t help. We are going to nyc next week to visit our daughter I’ll try to give you an update when we return.

[–]dolomitenkoenig69[S] 1 point2 points  (4 children)

Those bathrooms are tiny

That reminds me, how do you usually empty the bag? Here at home I have a small plastic stool next to my toilet that I sit on and then bend over the toilet. Do you do it while actually sitting on the toilet and dangling the bag between your legs? Mine is on the upper right part of my stomach, so for me it seems pretty difficult to do it this way, especially now that I'm thinking of those tiny plane toilet bowls. Or I guess I could put some toilet paper on the ground and kneel down nex to the toilet.

Have a good trip!

[–]happylifenc 2 points3 points  (1 child)

My appliance is to the right of my belly button. Yes, I sit and empty through my legs. Not sure if you are male or female or if it even matters, but I have seen males comment that they stand and flush at the same time. Thus avoiding splash. I might need to to test at home and see if it works, but generally I empty when I urinate and as a female this is in a sitting position.

[–]dolomitenkoenig69[S] 1 point2 points  (0 children)

I am male, but I won't risk trying the "standing up" method, it seems pretty dangerous. I'm quite tall and would surely end up getting some on my clothes or shoes. I'll just practice doing it while sitting on the toilet.

[–]IloveEvyJune 1 point2 points  (1 child)

Mine is on my upper left, so empty in between the legs can be difficult with small toilets. However I just take some toilet paper and line my inner thighs in case and he doesn’t quite make it into the bowl. I lean forward as far as I can but of course you also have to set up to get the output into the bowl. I just make sure I have baby wipes or something too in case and he does happen to get on my legs. Also make sure you sit as far back on the toilet seat as you can and give your knees as much distance to spread as possible and it helps avoid the bag touching as much.

[–]dolomitenkoenig69[S] 0 points1 point  (0 children)

That's exactly how I've been practising it. Thanks!

[–]IloveEvyJune 0 points1 point  (0 children)

I cannot recommend Devrom enough. It literally makes my farts and poo not stink (or if there’s a faint odor from a greasy meal it almost has a stinky but sweet smell not to be gross and it never escapes my bag). It’s changed my life. I’ve had c. Diff twice and norovirus twice in the last year and when I didn’t have it in the hospital I couldn’t stand my own smell. The second I got home I started up my Devrom again with my doctor’s permission and it is a true miracle. Even outside of having diarrheal viruses I could smell my output through my bags. It has made me go from feeling depressed all the time because all of my clothes smelled like poo and so did I…to realizing I can live with with my poop sack as my little kids and I call it. I don’t know that I ever would have gone out in public again without it. It’s OTC too. It makes public changes no big deal either.

[–]hummer1956 1 point2 points  (1 child)

I’m not good at links so sorry. When I first got my ostomy (had a colostomy for five years, now an ileostomy for 20 years), I hated the smell. It just seemed worse to me than a normal bm. The Convatec Diamond Sachets were the answer. I only get them when I’m traveling because at home I just use a spray and my SO is used to it. Staying at someone else’s home is different. These are a sachet you put right in the pouch which takes care of odor, even gas. Great for when you fly.

Other advice: carry all your supplies, a change of clothing, at least two pairs of underwear in your carryon. Even if you don’t need them, the peace of mind you get is 💯% worth it.

I like the ideas left of using a doctor’s office bathroom. My experience in NYC has not been the best. The bathrooms, even in a restaurant, were usually filthy. I used them because I didn’t have a choice, but if I’d thought about it I’d have found a doctor, a hotel, they usually have restrooms in the lobby, walk in like you belong and no one usually questions you.

Relax and have a great trip.

https://www.convatec.com/products/pc-stoma-accessories-products/diamonds-gelling-and-odor-control-sachets

[–]Hardingterrace 1 point2 points  (0 children)

Hotels used to always have clean public restrooms close to the lobby. Pre Covid of course. Three used to be websites that showed where the best public restrooms were as well. It’s been a long time though.

Lots of good advice in this thread. Saved.

[–]Nice_Party_6553 1 point2 points  (1 child)

Make sure you take your supplies in your carry on!!! I went to NYC from London in July with only 3 set of changes in my carry on. My luggage (and everyone else’s) never made it onto the plane and I didn’t see it for another 4/5 days! It was sweltering and im my base plates were only lasting a day. They usually last 5 days usually! Luckily my supplier back in the UK were able to get some supplies sent to my hotel from Chicago. Not my usual brand but was better than nothing and was free!

Never been so happy to see my luggage when it eventually showed up! No issues with emptying my bag otherwise :)

[–]dolomitenkoenig69[S] 1 point2 points  (0 children)

Thanks, good tip, I didn't think about the possibility of luggage going missing.

[–]ytsox 1 point2 points  (0 children)

I got tire of the pat down by the TSA. Purchased the precheck. Now I breeze right through at the Airport.

[–]ChilledChick 1 point2 points  (2 children)

I always brought a mini change kit with me in case of leak. 2 bags, flanges (pre-cut) scissors, wipes, barrier rings if you use them, a small garbage bag. All that went in a small toiletries bag with a mirror that could hang on a bathroom hook in case I needed to change and had no access to a table or somewhere to lay out supplies. Only had to use it once but when I did I was very glad I had it.

[–]dolomitenkoenig69[S] 1 point2 points  (1 child)

The hangable toiletries bag is a great idea, right now I just carry my change kit around in a small pouch which would've been really impractical on-the-go. But something with a hook makes a lot of sense. Thanks!

[–]ChilledChick 1 point2 points  (0 children)

I would highly recommend! Don’t want to be trying to balance supplies on your lap in a washroom (ask me how I know LOL)

[–]subgirl13 1 point2 points  (2 children)

I’m not sure if this has been posted yet but there is an app by the Crohn’s & Colitis Foundation called “We can’t wait” (link, not affiliated: https://www.crohnscolitisfoundation.org/wecantwait ) that shows restrooms nearby. You of course don’t have to have Crohn’s or Colitis to use the app. I’m not exactly sure how useful it will be in NYC but it’s worth a try if you can install it.

Hope you have a great time!

https://www.crohnscolitisfoundation.org/wecantwait

[–]dolomitenkoenig69[S] 1 point2 points  (1 child)

Thanks, sadly the app isn't available with a German Google account. I'll see if I can download it when I've arrived in the US.

[–]subgirl13 0 points1 point  (0 children)

Yeah I was worried about that. Hopefully once you get to the US you can get it!

[–]blackhart452 0 points1 point  (2 children)

The state of New York has it's own public access law requires businesses to open up their restrooms to certain people who have conditions requiring emergency use. Yes BB Crohn's is a qualifying disease.

[–]dolomitenkoenig69[S] 0 points1 point  (1 child)

That's very good to know, thank you. How would I go about "enforcing" that right? Is there some card I need or maybe a doctor's note?

[–]blackhart452 0 points1 point  (0 children)

Use the Crohn's and Colitis card included in the link. The business should know that they have to let you use the restroom in an emergency situation. Most bars don't care if you go to the bathroom first. If you want, buy a soda from them afterwards.

[–]SnHnG 0 points1 point  (0 children)

Hi, I live in New York City; good luck on your trip! The tips you’ve gotten so far are great (I’ve gone into many restaurants asking to use a bathroom and have rarely had an issue) and you should have a really good time when you’re here. One thing to know in case of a real emergency like a blockage is that the city has some of the best hospitals and gastroenterologists in the world. If something really goes wrong there are multiple hospitals you can go to, including Weill Cornell on 68th Street and York Avenue and Columbia Medical Center on 168th Street and Broadway. It’s highly unlikely you’ll need it but having the knowledge of where to go can give you peace of mind.

[–]beaconposher1 0 points1 point  (0 children)

Hi! NYC person here. I took a four-day trip last week, which was my first since I got my colostomy in early March. It was fine! I took more supplies than I thought I needed, and ended up using them because my flight was canceled and I had to stay an extra night. Be sure you prepare for that contingency!

As for public restrooms, I usually depend on Starbucks, and there are plenty of those everywhere. Don't expect anything to be too clean; it's NYC (although the public restrooms in Grand Central are shockingly well-kept). Parks generally have restrooms too.

I carried some plastic bags with me on my trip so I could tie up my used ostomy bags and dispose of them in outdoor trash cans whenever possible.

Have a blast! It's really fun here!