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Not sure if anyone finds this as an issue, but thought I'd ask.  I'll start by saying that I had colitis at 15 with removal and ileostomy. Then a year later, I had the next 2 surgeries to create JPouch and close ileostomy.  I am now in my mid to late 40s.  I am so grateful for these surgeries.  I've had a few cases of pouchitis over the years but overall doing ok.

My biggest issue living with JPouch is that every time we go to someone else's house, I sit and worry if I can hold it in, or when can I go to the washroom and is it located near where we are hanging out (e.g. need lots of background noise so no one hears) .  It's so embarrassing.  I try and not eat too much and try to calculate when we are leaving (if I can hold it...but usually I can't).  I much prefer when friends or family come to us so I can use the washroom upstairs (or a restaurant but then have to hope no one comes with me when I leave to use the washroom).

Anyone else find this an issue?  Or is it just me?

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It’s definitely not just you - plenty of folks here have expressed the same concern. I hope you can find your way to embracing your reality, though, since pooping and tooting are universal experiences. There are plenty of constructive paths - ignoring it, discussing it privately in advance, joking about it, being earnest about it. The only problematic path is being embarrassed or horrified by it. Good luck!

Hi, Lu31.

It's an issue for many, and I'm sure for people with a normal colon too!  But trying to hold on can cause gas problems and cramps. Try carrying a tiny spray bottle of air freshener. There is one called NokOut that is good, it eliminates odour immediately. And it doesn't add its own fragrance like apricot strawberry passionflower to the air. That could be worse.  You can find NokOut online, or possibly in a pet store. I bought a 32ounce bottle of it. I decanted a bit into a small 1 ounce spray bottle that I bought at a dollar store and carry it in my purse. I've also seen commercials for a spray called VIP or something like that. The "P" stands for poop, that's all I remember. And it is a tiny size to carry in your pocket or bag. Google it and see.

Oh my, I have a zillion stories and I totally empathize with you!!! I have gone in public restrooms where I have been dancing and had people comment on the noises I have made while in the stall!! Crazy!! Sometimes I recognize who said it and I wish I could take them aside and tell them my situation but I don't. I sometimes will ask a host/hostess if they have a more private bathroom. I worry that I will take too long in a bathroom and others will want to use it. I worry, like you, if the bathroom is too close to where everyone is sitting and they are going to hear me as well as notice I have been in there too long. I carry a plastic bag in my purse with extra toilet paper, paper towels, hand sanitizer and soap! (it amazes me that people sometimes don't have soap in their bathroom!) I have actually learned to go outside sometimes.. yes, even pooping!! I haven't done that to avoid going in people's home, but due to covid, I have been spending more time outdoors and rather than going in outhouses, I'd rather just go in the woods.  I used to travel a lot to dances in other states and share rooms with a friend, sometimes a suite with more than one and I would time my showers and bathroom use for times when I knew they were out and about/sleeping/done with the bathroom. Sometimes I tell people.. "I have some medical issues and tend to have to use the bathroom more often than most.. and sometimes I am in there awhile.. so let's communicate about your needs so I can anticipate." I guess that kind of honesty can be used when you go to someone's house.. either ahead of time in a phone conversation or email or facebook message. Sometimes, again, pre covid, if I knew I was going to someone's house and there were going to be a lot of people there, I would stop BEFORE I got there and use the bathroom elsewhere!  I know our systems don't always cooperate but sometimes that helped me out a lot. If I think of any other advice to give you, I'll come back. But yeah, I have found that many people have medical issues.. IE my cousin is diabetic and must plan snacks or meals when we get together. If she doesn't figure that out and stick to it, she can get really sick. I think we just have to try and not be embarrassed but tell people so we can feel more at ease. And  then there's the problem of running out of toilet paper at someone's house or restaurant or seeing there won't be enough for you when you enter and then asking someone for more and they are incredulous that you need more!! And figuring out how much to put in the toilet before flushing and being at someone's house that has a slow slow refill and you are in there for like a half hour cause you need to flush like 20 times! AHHHHH! You are not alone.

WOW! You are resilient! Having surgeries like that in high school are definitely hard, but you overcame that and still kept it moving, you are a strong person

My advice: be honest and share you story about your journey of having a disease that lead to your J-pouch. We cannot help the noise that we make or how often we go. If they are your true friends, they will be happy of the fact that you are okay. I say be yourself and use the restroom whenever you need to

Do not hide yourself, embrace your true self

Dr. Suess: Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind

I have a K pouch so I must have water and a sink as well as a toilet (outhouse are out of the question although I have used them on occasion...horrors!) and the catheter can often accentuate the noise factor: think trumpet.

Where I live, apartments are very small, the toilet is either in the entrance or beside the kitchen (did I say, NO sink!) and within whispering distance to the dining room table...there is no such thing as discretion or privacy.

Here they have a much more 'sane' attitude towards gas, farts, noises and smells...they just accept it all, laugh about it or ignore it.

I feel self-conscious about the time it takes but most people are used to me and my 'problem'...in restaurants, it is another story...I tend to plan my meals around my outings to make sure that I will not have any problems.

When traveling with my boss...also one of my best friends, I warned her...she didn't care, shared the room with me anyway. She also made sure that there was a handicapped toilet just for me at work, out of earshot of most of the other staff and teachers...

I suggest trying the opposite of what you usually do...do Not wait, go immediately, as soon as you feel the urge or even before you feel it...it means that there will be less gas buildup and less noise...and less potential embarrassment.

We fart, we burp, we do what all humans and animals do...we evacuate our bowels...anyone who is disturbed by your noise or smell is a hypocrite or a snob...or both. (even the queen sit, sh-ts and farts...think about that for a moment!)

Sharon

Thank you all for your responses.  It shows that I am not alone and there are others who understand and go through the same thing.  For me, it is more the noise than the smell and sometimes having to flush multiple times.  I'm not the type that is comfortable explaining my situation but definitely good advice.  So...I try and eat little and if I can, stick to non-gassy foods (but when at other people's houses, they serve the food so depends on what they are serving).  I avoid appetizers to try and keep dinner closer to when we are leaving (in the chance I can hold it...but I also find if I hold it and then go, then it's worse). 

And at work (well before this pandemic when going to the office), i'd often flush the toilet when I went....or tried to exit the stall when no one was there. 

It's been so long i almost forget what it's like to be normal.

Thank you all for your words and for sharing.

  There are people I tell my  J pouch story to, but I also find it's too much information for the average person who I meet dancing or at work and such. I don't need/want to tell everyone such personal things plus who has time?? I think just saying something more vauge, like "I have digestive issues" or.. what I often say is "I have a medical situation where I go to the bathroom more than the average" sort of says it all, without getting into specifics. When I first had my surgeries, I would tell anyone .. everything.. but I found  it was TOO MUCH INFORMATION for many to take in. I also found that people I didn't really know, then backed off from me because they thought it was weird and strange and perhaps thought I was over sharing or maybe would be a burden to them or what not. I also don't think it's wise to tell people in your work situation too much information. It can boomerang when people are up for promotions or there are other situations. I have had such information thrown back in my face in a very nasty way and  in one case, one woman was chosen to go on a cool travel work event while I was not considered and I can't help but think my boss chose her because he thought.. well, it could be a liability to choose Midnight Lady since she has "that medical issue of a j pouch." I disagree with Emerald City to tell everyone everything. Most people don't need to know all my personal issues!!!!

  There are people I tell my  J pouch story to, but I also find it's too much information for the average person who I meet dancing or at work and such. I don't need/want to tell everyone such personal things plus who has time?? I think just saying something more vauge, like "I have digestive issues" or.. what I often say is "I have a medical situation where I go to the bathroom more than the average" sort of says it all, without getting into specifics. When I first had my surgeries, I would tell anyone .. everything.. but I found  it was TOO MUCH INFORMATION for many to take in. I also found that people I didn't really know, then backed off from me because they thought it was weird and strange and perhaps thought I was over sharing or maybe would be a burden to them or what not. I also don't think it's wise to tell people in your work situation too much information. It can boomerang when people are up for promotions or there are other situations. I have had such information thrown back in my face in a very nasty way and  in one case, one woman was chosen to go on a cool travel work event while I was not considered and I can't help but think my boss chose her because he thought.. well, it could be a liability to choose Midnight Lady since she has "that medical issue of a j pouch." I disagree with Emerald City to tell everyone everything. Most people don't need to know all my personal issues!!!!

I agree with everything you have said. Most people have no interest in hearing about crapping or toilet issues, and apart from that it's personal information and none of anyone else's business. If you are asked about bathroom issues that's another matter, but you can handle it with vague answers like you have suggested because the particulars are nobody else's business.

Furthermore I think it's very dangerous to handle your dealings as a guest in someone else's house with judgmental mottos like "those who mind don't matter and those who don't mind matter". Such mottos are perceived to be espoused by those who do not have nuanced people skills, can't reason through and negotiate conflicts with others, and/or are too emotionally immature to adapt. There will be plenty of people in your life who mind that DO MATTER, whether they are superiors at work, clients or potential business clients or contacts, or social acquaintances who can become valuable colleagues or friends or the source of business referrals. I would never handle ANY social situation with a judgmental motto. People are all different and basing your handling of any social situation on "us vs. them" type mentalities eventually alienates people you really should not be alienating. It's definitely not something you will read in Dale Carnegie's book "How To Win Friends and Influence People."

Last edited by CTBarrister

Yeah my friend just renovated his house and I don't won't to use the shiney new bathrooms.Ive had a person walk in a public toilets I was in and start heaving and I'm worried when I return to work if staff wont want to use the toilet after me incase they catch my disease or blame me when others leave a mess.

@Lu31 posted:

Thank you all for your responses.  It shows that I am not alone and there are others who understand and go through the same thing.  For me, it is more the noise than the smell and sometimes having to flush multiple times.  I'm not the type that is comfortable explaining my situation but definitely good advice.  So...I try and eat little and if I can, stick to non-gassy foods (but when at other people's houses, they serve the food so depends on what they are serving).  I avoid appetizers to try and keep dinner closer to when we are leaving (in the chance I can hold it...but I also find if I hold it and then go, then it's worse).

And at work (well before this pandemic when going to the office), i'd often flush the toilet when I went....or tried to exit the stall when no one was there.

It's been so long i almost forget what it's like to be normal.

Thank you all for your words and for sharing.

You are welcome, thank-you for liking my comment I love that quote, it is true despite what people want to say about it

Everything will be okay, just have faith in yourself and rock who you are

Last edited by Lauren Of Emerald City

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