Fear of Using Public Restrooms with an Ostomy

Does anyone else have a phobia of using public restrooms, now that they have an ostomy? I find myself staying home in the morning until I'm pretty sure I can go out without having to empty my bag. I feel comfortable with my bag, but just don't see myself going through all of this in a public restroom. Of course, this limits me, and hopefully, I will get over this and be able to leave the house at any time of the day, and not feel like I need to stay close to home, just in case. I'll meet you for dinner and a possible lunch...just don't ask me for breakfast...LOL!

I'm sorry that I did not go back and research your situation, but, to the best of my memory, you have an ileostomy. I don't have a problem with public restrooms when it comes to the "bag" changing. I also have a perineal urethrostomy (so I pee like a woman) and the condition of most public toilet seats is revolting. r/ron

Oh Grammybec, I went back and reviewed your profile, and am so sorry about your multiple losses! I can understand why you don't want to go out more. I don't have an issue so much now with public restrooms because I irrigate my colostomy, but if you can't irrigate, I suggest using the flushable liners available through Colomajic. I used them with my previous ostomy, and they made using public facilities so much easier. You can order them directly online or through Edgepark (and maybe other suppliers).
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Hi, when I first got my ileostomy, I was very worried about going out, but over time I have got it down to a fine art. My ileostomy is quiet in the morning, so I work as a caregiver and always have my little bag with bits and pieces in the car. To everybody, it's a canvas bag.

Thanks, Pinky, I'll look into the flushable liners. Sounds like something that might help me feel more comfortable about going out in public and using not only public restrooms but restrooms in private homes. I appreciate your understanding of my situation...it's still hard to believe how everything happened at once
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...but life goes on and I know my husband would want me to enjoy what time I have left with our daughters and grandchildren.
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Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

That's more like how I felt with Crohn's. Yeah, it's weird, but the hell with it! You are alive, and the heck with what anybody else thinks. I go to a lot of sporting and concert events. When I go to NASCAR events, I feel more comfortable in a port-a-john because of this. More privacy. But the hell with it. I don't know your situation, but I was diagnosed with cancer almost two years ago after 21+ years of Crohn's. So I say, piss on it! I don't care what others think; I'm alive and kicking!

Sorry grammybec, didn't read all the post. You are in a bit of a different situation than me. But that's cool, will continue to pray.

You're doing great just being aware of this right now Grammybec, with all you've been through.

What I did in the beginning was go to public washrooms that I knew were usually in good shape ... had TP, were fairly clean, bigger cubicles. And kind of practiced.

I got my routine down -- and now I go when I have to, where I have to. Sometimes there's no place to put down stuff, no hanger for the purse containing extra supplies (where do guys keep their stuff?) -- but I find if I just take a deep breath and relax, it all works out.

When we go hiking, I have an empty jar with me for emptying. And I always have a jar/receptacle in the car just in case there's a need and no place to go.

Hope you're meeting friends for breakfast soon
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Hi Grammybec, I have a totally different problem when it comes to using any restroom. My problem is I'm confined to a powerchair, plus I am unable to stand for more than 2 to 3 seconds, thus making it hard to use any bathroom except my own. So, if I need to go out to appointments, I don't eat until I get home. Good luck and God bless, my friend.

Marines1967

Yes, the design of most public restrooms does leave a lot to be desired. I have never understood why the door doesn't go to the floor. I inevitably end up in one where the next stall is occupied by a mother with a young child who is ever so curious about what's happening next door!

I often use the handicapped/disabled toilets just because there is so much more room to move, and some even have a wash basin inside. For this same reason, gas station bathrooms are usually just one cubicle with their own wash basin, perfect for ostomates (even if the cleanliness in the latter isn't so great!).

I am a fan of the automatic flush toilets at most large airports; it's like everything disappears before you even go! I was fortunate enough recently to have access to the business class lounge at the airport on a recent flight, and whaddya know, doors to the floor in the bathroom!

Hope you venture out for breakfast or brunch/morning coffee real soon, Grammybec!

I just use the disabled toilets and carry some odor neutralizer in my handbag for emptying, etc. - much more room to maneuver and usually have a mirror at just the right height so I can readjust my damned corset and check for leakages. I do find, though, if there is a leak, that the best thing to do is to sit it out and go home! Starting to peel clothes off and trying to deal with it while out just makes things worse and spreads it all out more! Very rarely have I actually had to change bags while out.

I really hope that you manage to overcome this and get out a bit more; I know I tend to fester indoors on my own at times but do feel much better for some fresh air and a chat with people. Take care, Rach xxx

I did at first. Felt like everyone knows my problem. But I got over it... Hope you all do too. I have had an ostomy for about 1.5 years now. I don't like it, but do any of us have a choice? It's better to be here than somewhere else... hugs

Thanks, everyone... your comments really helped. I ordered closed-end disposable bags today, thinking that might be easier than emptying in public restrooms... just change the bag and bag up and throw the used one away like a baby diaper...
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I will let you all know how I do when I finally venture out for a whole day! Just to think of all the traveling and things I could do to keep myself busy, if I could feel comfortable in public restrooms, is exciting. I could actually get back to my favorite thing... golf. Thanks again for all your encouragement and friendship... it means more to me than I can possibly express. Breakfast here I come!

I love going out and using the public restrooms. I've had my ileo for just over 2 years. I like sitting in the median between lanes and dumping or changing my bag while sitting on my Harley. I invite anyone to pull over and watch. You never know. What would be really nice is if there was a sink in the handicap stall. But I make do and put a butt gasket in the bowl and dump. I never even think about going out if I need to dump; there's always a weed in the bushes that I can dump on. lol, lol. I don't let my stoma control my life. I travel twice as much as before, overseas and here in the states. But that's what floats my boat. Hopefully, you will find joy in your stoma; it's all good.
bikerboy greg

How are you today? It has been a while since I have written anything, but here it goes. At first, I was embarrassed to use the public restroom because I thought that people would look at me differently because at first, I would have to stand in front of a mirror to change my appliance. I have found that some people can be quite rude with their comments and looks. I have had my ostomy for quite some time now, and now I don't care what anyone thinks! It is a part of life, and when you have to change, you have to do it. After a while, it just becomes easier as time goes by. If someone wants to be rude to you, then screw them! Most of the time, I use a stall, but occasionally I forget my little handbag, so I change at the sink. Just remember that you are not alone, and there are some people who do understand and who are sympathetic to your needs. Don't worry; it will become easier as time goes on. Chris
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No problems here. It's not me sitting on the seat anymore since I don't have to pull my pants down to crap. The only problem is where they place the paper or build it for a twig to fit in the stall.

I change the bag and/or wafer while out all the time.  Love those Walmart bathrooms.  And they are 24 hours.  Those greeters probably wonder what I carry in my 'camera bag'?  And, as previously mentioned, no one really cares about my problems.  They have their own to deal with.

Loren

Hi Grammy Bec and friends

I've had my ostomy since I was 15, so that's about 48 years ago. I've never had an issue with using public bathrooms, unless there's no door. When I first had my surgery, I encountered that problem at the public restrooms at the beach in Coney Island. After not being allowed to go to the beach for the 4 years I was sick, I wasn't going to let a little thing like privacy ruin my return to summer fun. And so I just learned to empty standing up facing the bowl. I'd throw extra paper in so that I didn't splash and make a mess. I grew up, had kids, and frankly found it more difficult to change my baby's diaper than it was to empty. I've never had to change my appliance or faceplate in a public restroom. In fact, I never carried a spare appliance with me, and only once in all the years did I have a split pouch while I was away from home. That was a challenge, but since I always carry tape, I was able to find a temporary solution. The years I worked as a teacher, I would eat breakfast before I left home, so by the time I arrived at school, I could use the bathroom. My system was never predictable, but I rarely needed to use a restroom again until lunch. These days, I'm having a bit more of a problem with excess gas, and so I find myself needing to find a restroom more frequently. But I have friends who have to "pee" every hour...so it never embarrasses me when I NEED a restroom in a hurry. I literally give it no thought. I've dug pits & emptied in the woods, changed in stalls (at camp) using a flashlight and a container of water. But my most memorable experience was using the "bucket" on a motorized "junk" on the lower gorges in China. We were told to avoid the experience if possible, but nature called and I had to go. My friend stood by the door... (locked on the outside) and then forgot about me. So there I was locked in a stinky closet in the dark with a bucket of shit. The motor noise drowned out my banging on the door. Oh well...I lived through it to travel some more and encounter more adventures. I've found that no one really pays attention to what others do in the privacy of their public "stall".

I find that if I empty the bag more often, it is less likely that the bag or flange will break. My problem usually occurs after I eat dinner; for 2 hours, my bag fills up every 10 minutes, so I am in and out of the bathroom emptying it, and I don't dare go anywhere. I am still experimenting with foods and still haven't figured out what will slow it down. What I miss are long showers or baths. If anyone can recommend foods, I would appreciate it. This is a tough road, but every day I take on as a challenge. Good luck, Butterfly48.

PEGMARSTOM

Your reply was one of the best ones I have read on this site in 3 years.

Keep up the good work and thoughts.

Rick.....

Ever since crohns disease has tried to turn me inside out I have always used disabled toilets and I don't mind saying I have copped my fair share of abuse because i do not look disabled(which I don't feel i am more enhanced). Now I still use disabled toilets when someone decides to unlock them and as far a leaving a smell behind I don't care how bad it stinks. now a a security guard i still get my fair share of narky people who seem to think they have the monopoly on disabled toilets because they are in wheel chairs especially some of the oldies. I just tell them to get over themselves and enjoy the smell. Lately after a couple of mishaps at night I feel like ripping the whole farkin bag off and dissappearing somewhere. I know it wont help but I can't help how I feel. I,m over it
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GUS

I can't say "I know how you feel." Simply put, I am not you; how could I possibly know?

I have read many of your posts. There is no question in my mind that you have had more than your share of medical problems. Not to mention what emotional issues digestive problems bring to the table.

When I get to feeling a bit down, I simply think of the fellows and ladies at the local V.A. Hospital, where I volunteer. The price they paid for serving this country: missing limbs, all kinds of cancer, and problems from different chemicals used in war.

My problems cease to be problems after seeing these people.

Many of the people on this site are in terrible situations: cancer, TPN, multiple ostomies. The list, unfortunately, is endless. My heart goes out to all.

As far as I am concerned, anyone, ostomy or not, who is in distress and simply wants to communicate is welcome. Those who do not agree with me, as far as I am concerned, have an atrophied mind. Not to mention a short memory.

Always good to hear from you.

Rick.....

Butterfly.

If you want to lessen your output, you must reduce your intake of fiber; it's that easy.

If you like meat and things high in protein, your output will be halved.

Sorry to say, things most of us like such as bread, potatoes, pastries, and vegetables are all off limits if you want to lessen your output.

For the most part, proteins are absorbed very well in the small intestine. The small intestine cannot digest fiber, so it just passes it along.

If you are not prone to blockages and do not have them, simply tell your doctor the ostomy is controlling your life cycle. There are drugs that will slow down your intestine. How much you take will determine how slow you want to be. Slowing also will thicken the end result.

I want to caution you. If you are at all prone to blockages, don't go for the medications that slow you down.

Good luck

Rick.....

Junopete,

Thanks for the wisdom and good info.  This web site is quite productive.  
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Loren

For emergencies I keep a couple of large freezer bags and a box of Kleenex in my car. In a real pinch I can put the tail of the pouch in the freezer bag, drain it, then wipe with the kleenex, put the Kleenex in the bag and seal the bag,  Bob's your uncle. I put the freezer bag in a plastic grocery bag, leave the car unlocked and wait for someone to steal it. (LOL) It has got me out of a couple of tight spots. Hope this helps someone.

Hahahaha... might help a few people here... and might even get a few people to change "careers"... I think the "lucky" person that takes those groceries home might decide it's time to try something different.
Have a great weekend! Shelia
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Thanks, everyone, for all your great suggestions...this site always is so informative.

Hi Grammybec - Well, you got a lot of useful answers - except maybe Bikerboy Greg's, but as usual, his made my day
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. I think you will find using closed-end bags better for when you are out and about. The Colomajic liners work perfectly in the closed-end bags.

Also, I agree with all who say they use the disabled toilets - those toilets are not "reserved" for people in wheelchairs. I get those dirty looks too when I use my disabled placard for parking - usually from the elderly - but they don't know what's going on inside my horribly scar-tissue-infested abdomen - I don't either, but it can feel like a scene from the movie "ALIEN" - so tough titty!

I salute you guys brave enough to fly the flag in public! What better way to educate the ignoramuses of the world that we have a prosthesis just as necessary as those for an amputated limb! You rock, Panhead, Bikerboy, and Baddancer! Plus, you make us all laugh!
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Wearing the bag, I don't have a problem with public restrooms. I do, however, buy bottled water at the supermarket and take that in with me when I need to drain the bag. One reason is that buying water in the convenience mart gets expensive just to use their restroom, and second, I don't like filling up a reusable bottle in their sink.

All of the posts and suggestions have been wonderful.  I have had my ostomy for 2 1/2 years and had to get over my fear of public restrooms because I work full time and also enjoy going out and travelling.  One thing that still bothers me is port a potties.  I hate them.  I will have a real test this coming weekend as my husband and I are travelling to DC by train to go to the "Rally to Restore Sanity" and I will have no choice but to use a port a potty.  

I had my first real leak at work about 2 weeks ago and had to change completely.  I am a teacher so leaving is not an option for me.  Fortunately, another teacher watched my class for me while I changed.  It wasn't as bad as I thought it would be but I did lock everyone else out of the ladies room for about 15 minutes.  Once they realized it was me and what had happened, my co-workers were really good about it.  Hopefully this won't happen too often at work.