Fear of Restrooms: Dealing with GI Symptoms in Strangers' Bathrooms! | Let's Talk IBD
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- Опубликовано: 6 июн 2024
- Crohn's disease caused me some severe GI symptoms and I used to spend A LOT of time in the restroom. It made me fearful when we'd leave the house, especially during the holidays for family parties. If you have some fears when using other people's or restaurants bathrooms, I share some tips in the video to make you feel more comfortable.
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Hi, I'm Maggie and I have Crohn's disease. I am thrilled to be here sharing my personal experiences with Inflammatory Bowel Disease as well as living with an ostomy. I'm proud to share a little bit from a clinical experience as well, having worked as a GI pediatric nurse and ostomy telehealth nurse. I am so glad you are here. ♥ #ibd #crohnsdisease #ostomy
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Girl I thank you so much for this. I have IBS and totally have a fear of any bathroom but my own. Wait! We need to go out. Oh my I have to take meds and wait a while. I am 64 and have had this since I was in my early 20’s. I will not eat prior to going out. No way. Once I’m home ok. I’m a retired RN and I knew better but still had fear.
Me too!!
The waiting to get home to eat after a trip no matter how many hours or how hungry!
Me too !
This is my life! 😳😳😳
Know exactly 💯
Years ago, my mom tried to discretely deal with an ibs episode by sneaking away to a master bathroom and didn’t realize the relatives’ pet monkey (yes ... that was a thing years ago) was hanging out in the closed bedroom. She got into the bathroom and was trapped by he angry monkey outside the bathroom door far enough away from the gathering that no one heard her screaming for a long time. It’s true when folks say “you will laugh about this later.”
Thank you for this Maggie. I suffer from IBS. My husband's boss invited us and a group of coworkers and their spouses to a lovely luncheon at his home. Of course, I need to know where the bathroom was. My heart sank. In this lovely huge home, the bathroom was basically in the kitchen! Of course it was the diarrhea day for me. I was so embarrassed, because I must have used the bathroom 7 times while I was there. They had spray, but I felt what I thought were all eyes on me. I couldn't wait to leave.
It's nothing what you go through, but in my home, I always have plenty of toilet paper in each bathroom, wipes, plastic bags, plenty of soap, alcohol and disposable hand towels.
Thank you for enlightening us on what you go through when you're out. ❤❤
Having the bathroom off of the livingroom in my apartment is such a nuisance! Why couldn't they have put it off the bedroom? But that' s how the apartment was planned and it's absolutely not a good idea but it is what it is.
I hate using public restrooms too but with IBS sometimes there is no choice and that little room is a Godsend! I've learned to just do it and get out as soon as I can, which is sometimes not soon at all. But the alternative is so much worse! I have purchased a lot of unwanted food so I could use a restaurant's restroom. I have the app that tells me where the closest restroom is. I never go anywhere without scoping out the restroom as soon as I arrive. It's just how I roll.
Hi, Maggie! I also have an ileostomy. One of my best friends thinks it’s hilarious that I LOVE outhouses. I even have black and white framed pictures of outhouses in my upstairs bathroom. I’ve told her “I have yet to plug an outdoor Sh*****r!!!😂 Thanks for keeping 💩 real! You rock!!!
I totally get this. I don’t have an ostomy, but I have severe dumping, nausea, and a fistula that puts out bile on everything. I have short gut and gastroparesis, my transit time is seven minutes. I can’t “hold it”, when my gut gurgles I have precious seconds to find the bathroom. I’m always so afraid that people are going to hear while I’m going because those gas bubbles make a lot of noise coming out. I refused to use a public bathroom for 💩 when I was little, but I’ve had to get over it now that my stomach doesn’t care if I don’t want to go to the bathroom right in. It’s not a common thing for me, but there are times that my intestines are being huge buttheads and I could have an incontinence issue. Most of the time that situation happens at night, and I’m terrified that I’ll have my bathroom over and my gut will turn against me. It can get so hard!
Hi Maggie so glad to hear todays Vlog …. I have had Crohns for 43 years and am totally phobic of using other peoples bathrooms very limiting on my social life you are a wonderful young thing and it warms my heart to hear your advice …... and I know your helping so many people with this disease by discussing things so freely ❤
Bless you Maggie xxx
I literally wanted to cry reading the title. I’m only halfway through the video and honestly I’m pretty sure that I have IBS and maybe even Crohn’s my grandmother has it and honestly I am so ashamed to say that I’ve literally had to use the bathroom outside because when I have a problem like diarrhea or severe constipation it literally hits me and I have minutes to go and cope with that situation, I mean I get so backed up and I will use the bathroom about twice a week but when it happens it’s so excruciatingly painful and embarrassing. Only my grandfather really knows about how bad it is because we’re super close and he’s been with me a lot of the times I’ve literally been on car rides where I have to literally hop from restroom to restroom until we get home to cope with how much pain I am in, so it’s honestly nice knowing that I’m not alone and that I’m not some animal because I literally can’t control it and I feel so embarrassed… And also so scared not knowing if I’m in public if where I’m at will let me use the bathroom area… Or not. They usually do but still .. and then also if it’s a single use bathroom I’m usually in there when I have an emergency for 30 minutes to an hour and the knocking just makes me strain more and more because I’m so nervous because I’m so embarrassed and humiliated. N people get angry bc I’m “hogging” the bathroom.The bloating, gas and diarrhea and constipation. Literally all at once I can have it all in a single bowel movement is very difficult…
I so value your talks & really appreciate this one. I wonder if on another one you can share a bit about public restrooms like airports or events with the pressure women waiting in lines for the stalls? Also, how to maneuver in the small stalls with all the supplies and clean up if leakage happens? Thank you for helping us not feel so alone or disgusting. 🩷
Maybe it is SIBO?
@@annashindyapin What is SIBO, please?
I’m exactly the same as you! I have a fissure also which makes going to toilet excruciating. It’s so hard!
Sibo with a c (cibo) is chronic intestinal bacteria overgrowth @@melodybollinger4747
I have had some form of bowel problem (still unsure of what it is despite loads of tests) for almost 20 years and I’ve had so many awful situations in public / other people’s bathrooms. Before I go to a party / know I’ll be out for more than a few hours I take Imodium. I always have my little pack of supplies and meds on me at all times (really discrete so it just looks like a small makeup bag) every time I leave the house. Ever since implementing that pack a year ago I feel so much more at ease socialising. My ‘episodes’ have even decreased because I’m not in a constant state of severe anxiety. I would really recommend anyone with bowel issues to have a little pack. It’s honestly life changing!
The absolute worst. For years before I ever had an ileostomy it was brutal. When I had the bag, ironically enough, it was the least embarrassing (but scarier in some ways.) the j-pouch is probably the most embarrassing, as your friends will think you’ve brought a machine gun in with you. Love you all. ❤
Thanks so much! I’ve had IBS for years , and just had a bout of c- diff. I’m also worried about noise. Anyone else?
I'm always grateful when the bathroom has a fan. It might not ventilate the odor entirely (darn), but the noise helps my nerves.
this is such compassionate and valuable post. thank you for doing these ❤️ And you have the best sense of humor! God bless!
A couple things I do as a newer patient 1 I keep a pack of baby wipes (non flushable are stronger) and I always put some tp in the water at the front of the bowl so I can hopefully drop it on that and then it doesn't stick to the toilet resulting in fewer multiple flushes. The place this doesn't work as well is public places where the water is probably a smaller amount so it has a short flush. Have a great holiday season everyone
I’m with you girlfriend. Xoxo omg you are actually speaking about the things no medical ppl in my life speak to me about & fears are number one.
I have IBD (no where near as advanced or severe as yours) and Ive always had the philosophy I can either use the space made for that purpose or I can try and hold it because of embarrassment and have a very good chance of ending up going somewhere not made for that purpose..I decided the latter was worse, lol.
Not that I’m happy for someone else’s pain, but I have also had emergencies where I’ve had to use the bathroom outside… It’s literally humiliating I just want you to know that you’re not alone because I literally felt like I was disgusting animal… When I have an emergency, I literally have minutes and I’m in so much pain I literally start to sweat and cry… It’s very difficult
This made me cry. I’ve always felt like I’m the only one like this but I knew there must be more with similar issues out there. I feel less weird and alone now.
I had a bad flare at an uncles 50th bday (it was many years ago). Thankfully someone had an infant and was able to give me some baby wipes. I don't spend any time away from home without my own wet wipes now.
I just found your channel I’ve had so many tests done but the doctors tell me ibs and they can’t treat it… I wish there was something to help but watching videos like these help💗
Keepin' it real! Once again, great information.
Thank you for sharing. I have Ulcerative Colitis and understand your struggles. Sometimes my family or friends have to be reminded, I need time to get my guts right before I can travel or when I got to go I GOT TO GO NOW! helpful tip, ALWAYS carry a small roll of TP you never know if the paper has run out where you are going. I keep a roll in a pants pocket, for the places that DON'T have Charmin.
I’m not diagnosed, but my grandmother has Crohn’s disease and I’ve literally had to use the bathroom outside. It’s super painful bowel movements can take anywhere from 30 minutes to an hour and if I’m in public the knocking on the door just makes it worse… And yes I experience that too. I literally have minutes of time between feeling fine and literally sweating profusely in so much pain from bloating, that I literally start breaking out in a cold sweat, and needing to use the bathroom literally now! And people get so angry because when I say, I have to use the bathroom, it’s literally a whole ordeal, but I can’t help it…
I have had to change my bag twice while at work and I get so paranoid over it one It is a single used bathroom which is great I have access to water and by myself but I am always worried that I am taking too long and there will be someone waiting to use it wondering why I am taking so long. Plus when you have to change your clothes, and I have a hernia which I wear a hernia belt and that gets messed up I have to get those items discretely to my car, plus having to change to different clothing feels embarrassing. Though I don't really have much to complain about having my ostomy just shy of 2 years and probably have only had my bag have a leak in public 3 times.. Mind you I have had my bag leak other times but God be Praised it happened at home.
I deal with these issues with suprapubic catheter and bags.
This really spoke to me. I know where every bathroom is, from Cape Cod to Vermont. Dealing with crohn’s and short bowel for too many years, I do try to be prepared but most times, I have to cancel because I’d be spending more time in someone’s bathroom than visiting them.
Hi Maggie, have an ileostomy since 17 yrs old., a week after high school graduation. Your videos are wonderful. I had nightmares for years. Terrified searching houses for bathrooms. Waking up in a cold sweat. I am now 69 with 2 grown daughters, life is challenging but with it. I am going to move next year , near Hellertown, Pa. Will need new docs. Especially GI. I believe you live in Pa. Would you be able to give me some names. Thankyou so much for your valuable work. Sincerely, Audrey Guillermety
I understand this my self. I do hate it my self. Thank you for sharing this. I’m still in the process of being diagnosed. This has been a very difficult process for me. Thanks again for the information and sharing
My big fear is toilets that either won't flush or refuse to flush fully. I've been stuck in public restrooms too afraid to come out because it wont flush and I know people are waiting 😢
LOL - I was invited to a friend's house for lunch just yesterday - when I was on my way out, I literally ran back inside to grab a small perfume bottle "just in case", smh......
I had an illeostomy for three months. It is hard to take care of because of the constant liquid. I am about a month away from a permanent colonoscopy. I love that you Maggie as well as others are so up front on how to take care of these problems.
I know that feeling as my IBS is of the less enjoyable type with very short warning before it all hits the fan. First thing when getting somewhere is to look for options and find the bathroom furthest away within the 1-2 minute sprint time from the event. Eating at someone's place is out of the question most of the time if there isn't a good "emergency exit" available.
You are simply amazing.
I have kit / supplies in the car, under the passage seat. In the workplace office. In my handbag. Have had to ask workplace to put a wastebasket in the disabled room.
I check the bathrooms forensically before i leave home.
Hi Maggie: I've admired you for so long. I don't share your illness. But have always been drawn to the way you present yourself and impart such important and personal information. I don't watch a lot. But every once in awhile I like to see how your life, marriage, medical is going. P.S. I have news for you. EVERYBODY is apprehensive about using bathrooms outside their own home. The only one I could call "fearless" is the one who exits your bathroom spraying their own deodorant behind them. :) I wish you and yours the very best over this holiday season and always. And another P.S. I have to come to the computer to leave a comment. But I watch your videos and others on my big screen TV. Have you any idea how wonderful you look even on super closeups?!? :) Best wishes to you and yours ALWAYS.
Thanks for the video, Maggie.
Sorry, this is tmi -I have a colostomy- I had emergency surgery a year & a half ago and although I don’t go out for long periods anymore, I’m grateful that I haven’t had an appliance completely malfunction in public… yet. That being said, no matter what I eat (or avoid) my output has THE worst, most potent smell. Years ago I worked in healthcare so I can deal with bad smells - this is 10x worse. Even after using spray, I can smell it in my apartment for at least an hour. It’s disgusting and there’s no way I would use a friend’s bathroom. That’s why I avoid all invitations to go to dinner or hey, come over & watch a movie. Nope. Luckily my office has a bathroom in the warehouse that no one uses. I don’t leave my home for anything that takes me away from my bathroom for more than an hour. It’s disruptive, yes, but I don’t want to subject others to my “smells”.
Oh and a side note, the odor neutralizer sprays from Hollister and store bought neutralizers I’ve tried do not get rid of the smell. So that’s a bummer.
Excellent topic. Thank you so much.
Hi, i have a small makeup bag and it fits a full set of supplies, black doggy bag, stoma bag, spray, powder, scissors, dry wipes, key for disabled loos but no make-up 😅. ❤ nobody is that interested in weather or not is going on in there except the smell 😮.
I never eat before any appointment. It’s sad.
I cath myself, so I don't have the GI stuff but I have bladder stuff and I'm going to a friend's for Thanksgiving tomorrow for the first time. This is helpful even for me. ❤
Maggie thank you so much for this video !
I know you don’t have this but, I was wondering if you could do a video on having Crohn’s and IBS. My DR thinks I might have it along with my Crohn’s disease. Maybe you know someone that has both that you could do a video with. Maybe you’ve cared for someone when you were a nurse in a hospital.
Thank you for all the useful advice and for being so open and honest.
Great advice as always 👍
Hello, and yes I have trouble with that as well .thanks for sharing and take care. You handle it well.
Thank you for this video!
Maggie you are the best. I hope you and Zach and the dogs all have a Happy Thanksgiving! 🦃🍁 😊
Thank you for the bag suggestion! Looks promising, Maggie!
Poopouri works wonders!!
Thank you for this video, Maggie! I have IBS and have learned so much from you and the other subscribers. I have learned to be prepared when I go out. This really helps with anxiety!
People are amazed when they come to my house and find out I have a tv in my bathroom on close family understand
First. Love these videos as someone who is getting one on Monday!!
I so totally get this. I have IBS with constipation, & it’s such a fear of having to be in anyone else’s bathroom for an extended period of time. I wish I could get the ostomy bag because it would make things a whole lot easier, in having to evacuate what needs to come out (sorry for being graphic).
So true Maggie, we can make life so difficult for ourselves hey? 😅😅 Thank you for got this video. ❤❤❤
Girl, I'm paranoid about using bathrooms near the gathering area and I'm not even colonically divergent!😅
Thank you so much for the helpful advice! With my medical issues I often have to take a break in the bathroom to deal with symptoms, or find a quiet place to lay down. I try to prepare the host for this so that they aren’t scrambling to accommodate me.
I couldn’t help but be a bit distracted by your beautiful eye shadow! What is it?
I am missing Thanksgiving because of this. I've only had my Ostomy since November 4th.
Hi Maggie thank you for your help.i don't have ostomy but suffer with medical problems ❤❤
Hun i really dont care what people think about me. I used to but now i am in my 50s. Most people don't care about most things we gotta do. Friends and family understand. XOXO
Thank you Maggie. I hate really hate having an ileostomy. I don’t go many places. Many people don’t know I have one, and it’s been 11 years. There are times I feel so disgusted I actually ask God why didn’t you just take me home. It was an emergency surgery due to Crohn’s disease. Crohn’s disease that was misdiagnosed.
I don't have nearly as serious of a situation as you, but my symptoms have limited what I'm able to do for a long time, both because of the physical impairments as well as the psychological isolation it causes. I've gotten over the disgust with my own self, but it's like I don't want to inflict unpleasantness - or display vulnerability - to anyone else. Best wishes to you.
New follower here, thanks for ur videos, Im gonna start watching ur videos just to get myself ready incase I really have to get a surgery.
Healing prayers to you and your health conditions.
I still have my colon and all the parts, but my IBS has made itself apparent FAR too many times! THANK YOU for these tips! I’m so scared of any bathroom that isn’t mine and everywhere I go my first thought is, where is the bathroom and what is the situation in there?!
I hate having to use the restroom at work. Even more when a bunch of colleagues are just talking there. Why would you do that? Talk somewhere nicer ! And when i have to use any toilet, i also have my check list: a door that closes, toilet paper, and a working flush 😅
I have IBD and I was at a massive centre lots of toilets so I avoid the first 30 toilets and go to the end the cleaner didn’t care …. Lucky for me I didn’t need the toilet it was gas as I struggle to pass it having IBD and visceral mylopathy so I started blowing I was like no no no someone use the dryer 😅the cleaner must of heard as soon as I left she dived in my toilet with toilet cleaner I give her the look of death like seriously woman I can barely leave the house and she was shocked when there was nothing to smell or see I always carry body spray wipes in my bag GI issues are ruining my life right now I have weekly dates and even then my GI plays up and is like not today you ain’t eating that 🙈it’s very uncomfortable and even if there’s 3 toilets spare I always feel people know I’ve been here forever as I also have bladder issues so either way if I can’t wee I try to avoid catheters as they give me UTI so I wish I had my own portable toilet 😂xx
I would like ideas for carrying supplies that a man with Crohn's can use to discreetly carry supplies into a bathroom at a party. It's really difficult. I cannot carry scent sprays in pockets with my keys and wallet. I don't have an ostomy but do have a need for odor control and wipes.
I don't have an ostomy, but I hate having to use the bathroom, I hate the odours afterwards, the time it takes etc, but the WORST thing for me is noises. Noises when passing wind, noises when stool hits the water, it terrifies me. Anyone got any tips?
To cut down on the noise of the splash lay some toilet tissue on the surface of the water.
Hold tissue against your anus as you are emptying. This muffles the sound a bit. Of course, some tissue in the toilet basin also helps.
I can't believe this is what I'm contributing to RUclips. 😂
Everybody does it.
It’s a part of life. Don’t forget that everyone makes noises when they go to the bathroom. Even your friends and coworkers. Family members, etc.
Great ideas. I’ve recently had to use catheters for the first time and I stupidly thought carrying a lunchbox looking medical bag was smart. Of course coworker noticed and said something to me. I laughed it off but so embarrassed 😞 do you have any suggestions? Love your videos
It is still a struggle and I have had an ostomy since 2016. I'm an actress in musical theater and I am terrified of having my stoma blow up and have my bag balloon while I am on stage without an opportunity to use the bathroom. I try so hard not to eat for hours before a show. It's a fear.
Omg I work with the elderly so I don't eat either!!
Hello, my friend in my head. Thank God my Crohn's isn't as severe as yours. I still have all my 'parts'! Happy Holidays to u as well🤗 And Zak, of course!!!❤
If you sprayed that lavender spray in my bathroom you would send me to the hospital. Think twice before using scented products around people who’s allergies you don’t know. Especially bringing them into someone’s home.
I never leave home without tissue packs, my hand soap that I am not allergic to, wet wipes, hand sanitizer, meds, and just a full purse of preparedness.
I have IBS-D and I stay in the bathroom as long as I need to. My friends all know by now, they can keep themselves amused while they wait for me. (I am mostly home bound in my small apartment so generally people come to me and are left sitting alone on the couch. )
WY do you have to use a clear body bag when you go to party's or home holidays I can see at a concert or some other kind of program but when you go to a family gathering why can't you just take a real cute one for family parties or holidays
Does it work better with more dishsoap or castille to work more like homemade poopurri?
What does the rubbing alcohol do? Thank you😊
I have Crohn’s
And I am very picky about a clean bathroom
Wet wipes are godsend. ❤❤XOXO
Going to the library or drs I Kringe if I need to go,,I’m such a germaphob
Totally OT: as a senior with ostomy and being an avid movie goer i have come to the conclusion that i am a Cyborg now:
definition from WP : the term cyborg applies to a living organism that has restored function (or enhanced abilities )due to the integration of some artificial component.
❤
🌼☀️
You cracked me up when you said something of a Georgia highway in the dark with crabs crawling on my feet.. It just sounds like something I would run into. I can just see that with tears in my eyes. 🤣🤣 ❤ Hope you're doing well ❤ (BTW, tell Zac I'm still jealous..)
The sprays are awful. They do not remove the smell, they just add another smell on top, so people like me with sharp nose will experience the plethora of unpleasantness.
I dont know what ur going through but don't be ashamed ur only human and also if want to be discerat about ur issue why would u bring a clear bag if u want to be discerat bring one that nobody can see inside 🤔
Well guess what? Almost All the fears and worries you discussed are not confined to ostomates! 'Regular' people have those issues/fears as well. And, until I got my ileostomy, I didn't understand there were worse things to come. Thank God my ostomy was reversible and I only had to deal with all that ickiness for 2 months and 3 weeks. I do believe I managed to dodge some serious depression issues because all my hopes hinged on the temporary nature of the stoma. I listen to your vlog to remind myself to be grateful for my blessing. Thanks, God.
❤