Seeking Understanding for My Unique Needs

Jul 27, 2022 9:34 pm

Just need to vent a little: Going to hear some music down by a river town, which I love. Earlier, at home getting ready, I was just kind of thinking out loud, something along the lines of, "I hope our friends are staking a spot near the bathrooms." My husband said, "Well, I don't know, ask them to move. What's the big deal?" It really is so NOT a big deal, just one of those times when I realize my needs are different from the average person who brings food and drink, walks afterwards, all without a thought. I sometimes wish there was ONE other person in my social circle who simply said, "Me, too." ;Ok, thanks for listening everyone. I feel better.

Jul 27, 2022 10:02 pm

Just remember, they're the oddballs, you're the cool one.

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Jul 27, 2022 10:03 pm

Over the years, one gets accustomed to it.  My spouse knows, of course, and that helps maintain a certain level of sanity when I begin to worry about such things.  You get resigned, philosophical, and you move beyond the sort of frustration that you rightfully express.  Reality dictates, and so you flex with it.  The times that bother me the most are when I am forced to utilize a Porta-Potty, always disgusting, because I know I won't make it home otherwise.  Anyway, don't worry; we all suffer these same episodes and come out the other side okay.

Jul 27, 2022 10:16 pm

I love using a porta potty. Lean over and let it go, about the fastest way to empty. Carry a travel-size thing of wet wipes and you don't even have to touch that disgusting toilet paper either. The bathroom on train engines is just about the same. I also always just kneel to empty, never sit down.

Jul 27, 2022 10:19 pm
Reply to AlexT

I just used one!

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
Jul 27, 2022 10:19 pm
Reply to AlexT

Thanks for the laugh, I needed that!

Jul 27, 2022 10:21 pm
Reply to HenryM

Y'know, it usually is not a big deal at all. Just today for some reason. The music will start and I'll be over it. Thanks for the words of wisdom.

Mabsie Moll
Jul 27, 2022 11:17 pm

I'm new to the ostomy circle, but I'm required to measure my liquid output for the moment. I do feel it's easier to just empty into the w.c. rather than a measuring jug! I was out to lunch the other day and quickly realized even more so than I had thought about how important the proximity to toilets is for us ostomates. And the cleanliness issue of such areas is even more important. God, we take so much for granted in our lives until change is forced on us and we have to rethink our daily self-care routines! I feel your pain, hun!

Mabsie Moll ‍

Jul 27, 2022 11:54 pm
Reply to eefyjig

Hi Eefy ....I hope everything came out all right!! ...Magoo

Jul 28, 2022 12:18 am

On any kind of public transport, I am very happy to use the bathroom.

I don't have to sit down!

I don't have to touch anything!

I just dump and run... Two minutes so I don't have to breathe the air for very long!

Always keep some sheets of paper towel, just 3 or 4 sheets, as well as toilet paper.

I always have a backpack and keep a roll of 2-inch Micropore paper tape. A strip of that at the right time can give you 15 minutes lead time, roughly.

Any fast food restaurant or pub has a decent bathroom except for the old timey pubs (a technical term) where the old dudes have a bad aim!

I recently lost a ten-year-old extended family member and had an "interesting" day! I will write something about that in the forum.

In huge crowds, I just drink very little but just enough and eat a banana during the day. I might drink a coke very slowly for the caffeine but let some of the gas escape. Usually, I get away with only some gas in the bag. You can open the end (if it's just gas!) of the bag in a tight crowd and let the gas out if you absolutely have to. I went to a 4th of July fireworks show in Manhattan once with my camera (will post some) where there were at least 2 million people on the Hudson River side. I was terrified of a disaster! But I had a change of clothes... Don't forget underwear and socks!... Shit flows downhill! I never needed the porta potty all day! It was a total success and I was alone, so nobody to watch my "stuff" if I had to run for the potty! New York City people are the best! Not even a candy wrapper left behind! A few years ago.

Sorry, rambling again... Magoo

Past Member
Jul 28, 2022 12:21 am

Hence why I have no friends. Although I'm fine with it - I actually have huge social anxiety anyways, so I'm comfortable doing my own thing. But I hear you - most don't "get it".

Homie With A Stomie NS
Jul 28, 2022 12:41 am

Hello girl, I'm in your club... I focus on everything we do with bathroom locations.... I was never happier to see a portapotty at our remote fishing location....

Some don't think like we think, and because we look and act "normal," they forget about our extra baggage.....

Do you, boo, always.


Jul 28, 2022 1:04 am
Reply to Mayoman

Fine as wine!

Jul 28, 2022 1:10 am

Thanks, all. I have to say, my husband is actually one of the most supportive people in my life. He understands when I have to burp my bag, when I need to empty before we go and empty before we leave. He has even volunteered to go into a bathroom after I do when I forget my odor drops so people will think he was the one who "dealt it". That is true love......I'm so used to this life of mine and have accepted my differences. It just hit me a little differently today, the unique challenges we face that no one else could really understand, except for people who have those same challenges. Thank you, stoma soulmates.

Jul 28, 2022 1:14 am
Reply to eefyjig

...Good!! There are many advantages to our plastic appendage... For the male of the species, we happily never have to sit!! Aren't you jealous, Magoo?

Jul 28, 2022 5:37 am
Reply to eefyjig

Happy wife, happy life so they say.

Jul 28, 2022 5:48 am
Reply to Anonymous

Did you find that having a stoma caused all your pre-stoma friends to disassociate themselves from you once you got your stoma?

Jul 28, 2022 6:21 am
Reply to Homie With A Stomie NS

The best part about me getting my ostomy is not having to have the GPS coordinates of every bathroom wherever I'm at. Well, that and I haven't stained any underwear in about 18 months.

ron in mich
Jul 28, 2022 12:54 pm

Hi all, I agree with Alex. Now that I got an ostomy, I don't have to worry about finding a restroom. I dump before I leave the house and I plan my eating before, depending on how long I will be gone, whether it's shopping or music in the park or ATV riding.

Jul 28, 2022 7:50 pm
Reply to Mabsie Moll

Mabsie, we do take things for granted. Like pooping once a day in the normal manner!

Jul 28, 2022 7:51 pm
Reply to AlexT


Jul 28, 2022 7:53 pm
Reply to ron in mich

I am usually in that boat, too, but my output has changed with my gallstones and I'm unusually liquidy and heavy. Hopefully it's just situational and I go back to normal after my surgery.

Jul 28, 2022 10:15 pm
Reply to Mayoman

Haha! I have been known to "hover" over the toilet in unsavory places - it's a good workout!

Aug 01, 2022 8:23 am

Hi Eefyjig and all my other ostomy pals... I have had my ileostomy for over 60 years....since I was 15..... All I wanted was to get out of the hospital (with my stoma) and get back to school and teenage life (after 4 years of being sick).. I did anything I wanted to do.... swam in the ocean, used disgusting bathrooms with no doors (at beaches and public parks)....When I went to China, my girlfriend got sick....and the bus had to stop for her to find a bathroom (she soiled her pants), I filled my pouch.... I swam in the Dead Sea, in Israel, and my whole pouch popped off, due to the high salinity of the water.. That was a mess......but the showers were private, and I always have tape... I flew all around the country, Mexico, and the Caribbean, in a single-engine bathroom, and only once did we have to land on a dirt airstrip in a cornfield, for me to find a bathroom... On road trips......just pulled off the road and dug a hole in the woods....and left it to the wildlife to figure out.. At 74..... I'm not as anxious to be that adventurous....more so because it's not so easy to bend...... but I didn't let things hold me back. either... I guess the most disgusting is when my girlfriend forgot about me.....locked in a closet, with a bucket on a sightseeing water taxi in China.. She started talking to someone else..... Definitely not fun! But I survived it and regret nothing... Best of luck to all of you... and most of all, enjoy life..... Marsha...

Aug 01, 2022 1:34 pm
Reply to Immarsh

Marsha, what a great attitude and what life experiences. You made my day!

Aug 02, 2022 12:34 am
Reply to eefyjig

It's hard to gauge what you'll need when you go out. I went to a park concert a couple of weeks ago with 2 friends. All was fine till we left and my pouch filled up like a helium balloon. I tried walking 10 feet ahead of them and quickly 'burped'. My friend walks up and says "Man, it stinks here."

Aug 02, 2022 6:35 pm
Reply to Mabsie Moll

Yep, when people don't have health issues, they take life for granted. Cancer changed my life in the way of what I eat, drink, and live life. Not to complain, but to give God thanks for every little thing that I accomplish. It's a privilege.

Rose Bud 🌹
Dec 20, 2022 2:35 am

Reading this post pretty late, but I know exactly how you feel. Add diabetes to the mix and it makes it hard to plan things with anyone. Like you can show up late to a movie and you need to eat... There goes part of the movie I just missed out on... BUT hey, we're all still here to vent to when we need to, because what I've found is all us front butts get it... lol

Jan 14, 2023 6:39 pm
Reply to eefyjig

I love that "stoma soulmates".

Mar 21, 2023 1:57 am

I cried the other week when a new pair of yet another size down pair of jeans came in the mail and they were still a little big. My husband and I got in a big argument about it because he couldn't understand why I was upset. If I was trying to lose weight that would be one thing, but I'm not. My doctor was talking to me before my endoscopy the other day asking if I'd lost more weight (still not sure why they didn't just put me on the scale) and I don't have a scale at home because I don't want my tween daughter to become obsessed with weight (I don't know if a scale would really be a big issue or not but I never make weight a focus with her in conversations) so I told him I dropped another jean size... so back to food aversion therapy I go. I was able to shrink the new jeans so they fit okay now, but I was talking to a girl at the store I was returning another pair of jeans to and she thought with my height (5'2") and current issues I should stick to jeggings for now. I never would've thought I'd be in tears over jeans being too big. I think for me at least it comes to loss of control over what's happening to my own body if that makes sense. On another note, my mother-in-law texted me that the bathrooms reopen at the local park soon because I told her I wasn't comfortable since my reversal going there dog walking with her until the restrooms reopened.