Public Ostomy Mishaps | Let's Talk IBD
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- Опубліковано 18 вер 2024
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Major ostomy leaks that don't happen in the privacy of your own home are DIFFICULT. It causes embarrassment and may even lead you to leaving. In this video, I share some of my own stories and some tips so ease these situations.
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*This video is not meant to diagnose or treat any illness or condition. This is for entertainment purposes and to get you thinking! Please ALWAYS refer to your physician for medical care.
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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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My manager shared with me that one time in her younger years a woman she didn’t know came up to her in a public place and politely got the point across that she has her period… She handed her a sweater to wrap around her waist and told her to keep it. My boss, of course was horrified and went to the restroom, etc. We can all help each other by showing caring and understanding gestures like this for all types of embarrassing situations. She will always be grateful to that stranger.
In my purse I have what I call my MacGyver Kit. It contains a fresh bag, flange, ring, tattoo tape, packets of adhesive remover, packet of spray adhesive, small bottle of M9 deodorizer, small spray bottle, packet of wipes and hand sanitizer.
Thank you, thank you, thank you! 💗💗💗 …I have only had my colostomy since June 23’rd of this year, and your videos have made a WORLD of difference in the way I perceive and deal with my newly acquired little friend! 😅 I SO appreciate your inspiring demeanor and all of the information you share! You are such a blessing! 💗
I’ve had mines since July 10th. Hope you’re doing well! 🤍
I have a 4 year old grandson and he has seen me change my bag from being very young. When I have a problem he comes to the bathroom with me to help out and make sure I am ok. He is such a little trooper 😊
What a blessing he is.
I took my first plane ride post-surgery earlier this month and I had to empty my bag. I'm a wheelchair user and couldn't get to the bathroom. I had my supplies in my carryon and all I needed was a vomit bag which was provided. My best friend stood in the aisle while I dealt with the situation and no one knew what was happening. Now I know I can deal with surprises.
Dear Maggie, thanks very much for advertising the LMNT video. My e-mix powder ran out since the past two months and I have not had it since then. Like yourself, I have Crohn's Disease and had my Total Completion Proctocolectomy (Barbie Butt) Surgery on 21.09.23, in the morning. I got discharged and back home, om 2.9.23 after 12 days only to find myself acting as a carer to my elderly parents. I have two pet chihuahuas. It was a lonely recovery as I had little time for myself and looking after my elderly parents. Mum is in her early 80s and Dad in his mid-ninetees. He's had several falls and was in a carehome last xmas. I'm single so feel insecure with a 'what if?' feeling all the time. I get anxious that my stoma supplies will run out. I just feel very lonely as I am single and with a disability. I'm also looking after my small baby pet chihuahuas.. Life with a stoma is hard. Coming to one year now, I am still struggling with a new lifestyle that includes, leekages, spillages, soiling to name a few. Currently, I am trying to get hold of a stoma belt. My Ibd nurse is helping me to order one. Thank you for your advice for always being there. I am considering joining your shop. I have liked and subscribed to your channel. I would like to wish you, your husband and your pet dogs all the happiness and love. You are all lovely souls. GOD BLESS YOU ALL. xxRajeev.
From the UK.
I had my ileostomy in 1976. 48 years ago, 14th May 1976. I went down to theatre at 2,00 pm came back to the ward at 5.30 ! (I kept the page from my diary) I am 75 next month . I had severe crohn's for six years. My life was dreadful. I am 6ft my weight at that time was around 98 pounds (In the UK 7stone) The surgery, like yours took everything away. (My small intestine is fine . No disease at all.) I have never ever regretted my decision to have the op. I got my life back. Everyone who has gone through this procedure will say the same "I got my life back !" and it's not an exaggeration. Living with Crohn's is dreadful. Diarrhea up to 10 times a day and other complications. The list is endless. It really is a miserable existence.
I will try to explain simply to people who have not gone through this, and maybe facing surgery and probably couldn't imagine living with an ostomy.
An Ileostomy is not as good as a healthy, fully functioning large bowel.
But, its a MILLION times better than a crohn's diseased large bowel.
Thanks to my brilliant surgeons, I got my life back
BTW, do you have to buy all of your medication in the US ? Here in the UK everything i need is free. (thanks to the NHS)
I'll chip in my voice. I'm 61 and have now lived more than half my life with an ileostomy. I've had numerous offers to to convert it to a j-pouch over the years and wouldn't do it. I use a two-piece system with disposable, closed end pouches, and the life I live is the closest thing to a "normal" existence I can imagine. After UC for a dozen years, this is paradise. Do leaks or the threat of leaks affect my behavior? Probably, at least to an extent. I don't fly much, but don't like flying anyway. If I'm traveling away from home, I have all my supplies and a change of clothes. Mostly, I avoid leaks by changing everything at the first sign of a leak (Itch under the wafer). Most important of all, I take medication and eat things to slow down my bowels. I avoid food that is even slightly questionable. I don't make my ileostomy public knowledge, but that's just me. It's all about stopping the problem before it starts.
@@andywindes4968 HI, i agree entirely with you. My ostomy is not public either, I have been married for close on 50 years, My wife has never seen my stoma or procedure for maintaining it. I am not ashamed, but it is intensely private to me.
I have had mine for, as i said close on fifty years. (65% my life) One has to deal with problems that arise. And i have never ever regretted the surgery, Crohn's is truly dreadful.
To answer your question on health insurance. However, it's dependent on what health insurance you go with. If they will pay or won't pay for medications and medical items.
If insurance doesn't pay for our medications, then sometimes the company will allow free medications or medical items. Sometimes, insurance will pay half of most of the medications. Depending on if someone has disability your medical/ medications are free, and some disability benefits/ insurance only allows 3 medications per month. You pay out of pocket for medications and medical item. Hopefully, this answers your question.
@@an-alechianeathery770 Thanks. I was just curious how your system works.
Im 5 weeks into having an ostomy and a public accident is my fear! Hearing your experience makes me see how i can be prepared and that even if everything goes wrong i'll be fine. Thank you! Your videos have helped me so much!.
I’m 7 weeks in! I hope you’re doing well! 🤍
Hope you are both oksy. Im almost 3 weeks in! Now trying dairy for the first time in 6 years @@HopeofGlory-qx4lk
If it happens it happens. It isn’t your fault and you shouldn’t be ashamed. I always carried extra supplies and clothes with me.
❤❤ The worst leak i had was in church. Since I'm a wheelchair user nobody can see my clothing buy I worried about the smell. Fortunately I was able to get to the accessible bathroom to rectify the situation and change my pull-up. The ushers in my church always help me.
❤❤ I've had ostomy leaks while in bed. Fortunately the VA supplies me with chucks for the bed and pull-ups.
Once i had a leak in the library but my friend helped me. She has been a real blessing in my life. Being a wheelchair user sometimes I need help.
Yes, I'm thankful for the VA providing my supplies!
@@DorothyDNelson
I love these videos, I don't have an ostomy so I have no idea what goes on but I would be that friend you could go to if you needed help, I always try to be understanding to any situation, we all deal with our own struggles and should be able to turn to a friend when we need help ❤
Great video! I'm a huge believer in having Plan B, C & D for my urostomy. I keep 2 sets of stoma supplies in a cosmetic bag in my purse, AND I have a tote bag in the car with stoma supplies, paper towels, bottle of water, a pair of black leggings, a t-shirt, a pair of flip-flops, and underpants. IF the worst happens (total let go of the bag) I just send hubby to the car for my emergency tote bag, and change everything from the skin out and keep on truckin' 😊
Fortunately with a urostomy, it's just urine. So... if I'm somewhere like a restaurant, I'll knock over my water (great excuse) and then dash to the bathroom to do a change. If I'm with people who are 'in the know' I'll just be honest and let them know what happened.
What a great idea knocking over the water. I will remember this if this ever happens to me, Thanks!
I’m very open about having a colostomy too! I would rather have friends know and ask questions rather than to be in shock if I have to get suddenly.
I think you are brilliant. I have a Urostomy. The day i was in college i had three leaks. I changed three times and then there was a 4th leak.
Travelling home by public transport was the longest 45 minutes. I got to car and sobbed. I was safe. There was cloths, kit and nobody sniffing around me. Your video was inspiring.
Collette from the UK
I really wish I said things on your videos more often because you know who I am and now I’ve been watching you since I got an ostomy I was an emergency. It was emergency life-saving surgery and it has nothing to do with the disease. Mine is in neurological disease that paralyzed my back and leg, especially but it also paralyzed my inner tube so that includes your colon and your stomach. I got to the point where nothing was going in and nothing could come out, and I almost died, but I have told you several times that I still have to listen to your voice or watch you do a bag change every time I change mine still and it’s been almost 2 years but I’m also disabled & medically homebound so luckily I haven’t had anything like that happen and because I’m so fearful of changing my bag even, that I always bring a bag with me that has all my supplies in it. This video is definitely something that I needed to hear. I think a lot of other people do also!! It’s like your a friend on the other end for me & Zach also 😉 I’m grateful for all you share & am going to try that electrolyte that you suggested because I’ve tried them all and I like you we have a lot in common. I also have a Iliostomy and watery output most of the time…. Sucks🤭 I’m also the one who asked you recently to do another bag change with the new product because it’s a one piece and I’ve always done two pieces and I actually got this product but I haven’t tried it yet because I don’t know how to get it on and make sure I hit the right place and all that stuff, soooo show us PLEASE😇❣️ Thanks Maggie❌❤️❌❤️❣️❣️❣️
Maybe because I've been through the diaper years four times, and I've had girls who need menstrual supplies, I never leave the house without extra supplies and clothes. Your tip about putting ostomy supplies in a cooler is such a great tip, I never would have thought of that
Its a good idea to keep ostomy supplies in the car. The trunk, the glove compartment etc. that way you always have it no matter where you are. Great advices Maggie.
Preparation is essential also it's nowhere near as bad as the situations I was in before surgery. My emergency kit is always with me
Try keeping an individually wrapped sanitary towel in your bag . It has a multitude of uses and takes no space to carry
I keep individually wrapped compressed towels by BigOetter. I got 100 pk on Amazon for $8.95. You simply put a dab of water on it and it expands into a washcloth sized towel. Very handy.
I had my Ileostomy a year ago this week, I have only had one leak in public so far and got to change my bag and all my cloths in a gas station bathroom, lucky I was on my way to an ostomy nurse appointment and had all my supplies and a change of cloth with me. Walking in with a small trash bag stuck in my pants was not a lot of fun but at my age (66) I really didn't care, told the lady at the counter I had a ostomy leak and I would be back in a few min. Most of my leaks happen when I am in bed and I have learned to sleep with a large towel wrapped around me, it has saved having to get my wife up and changing the sheets several times in the last year. Love your Chanel and keep on teaching me as I learn more about my ostomy.
Red Lobster - a new definition of going commando!
As an incontinent person I couldn't agree with you more.there's nothing more embarrassing than being in public and have a diaper/pull up leak. I keep my supplies in a back pack that hikers use ( a pack of baby wipes, extra diapers/pull-ups, extra pair of pants and socks (just incase)and a couple of plastic bags for those times for when I can't throw it away right then and there)
Thank you, Maggie! Helpful and appreciated. ❤️
I'm old so I don't get out much anyway and have gone off a couple of times with my backups nicely packed in their handy case, still hanging by the door.
Not quite 2 yrs into having my colostomy, 'ma stomy', and I haven't had a public 'failure' so far.
My stuff is like peanut butter so leaks are not typically very extended beyond the wafer and I usually wear a hernia belt about 8" wide with a hole for my appliance which helps to prevent the wafer from complete failure. Maggie McGyver! Love your sharing about learning on the fly how to manage life with LeRoy!
My output too is much like peanut butter. It’s annoying at times but I much rather have solid than liquid which would cause leaks.
I had surgery July 10th.
I’ve learned to take a backpack with everything my son needs to do a complete change if necessary. We’ve dealt with leaks and changing clothing in the bathroom stalls in the past too.
My embarrassing moment: the clerk in the grocery store thinking the bulge under my shirt is a concealed carry..
I am going to be 57 in November, so I will start at the beginning. About two years ago all of a sudden I started to get chronic diarrhea. I thought I might have the flu or I ate something bad. I waited a few weeks and it was not stopping. I was also getting a pain in my right side but it was too high to be my appendix so I finally went to the doctor. Of course she ran blood tests, x-rays to rule out kidney stones and my favorite a fecal test to see if I had a parasite, infection or anything else. It ended up being salmonella. I took two weeks of antibiotics that should have cleared it up. I did another fecal test and the salmonella was gone but I still had diarrhea and stomach cramps. I had a colonoscopy and everything was fine. No crohns or anything. So, I was diagnosed with IBS-D. I have been on so much medication that either didn't work or caused horrible constipation. We are talking seven days with no bowel movements. Now I currently only take Imodium when it gets really bad and I was taking a probiotic. I have now stopped taking the probiotic because it causes really bad gas..My most embarrassing moment was after church we were going to the grocery store. I had gone to the bathroom before we left church, but at the time I was still on the probiotics and had gas. In the parking lot of grocery store I let some gas out, and yes a pooped my pants a little. Thankfully this store has a restroom in the vestibule. At the time I did not carry any spare underwear or anything to clean myself up. I did the best with toilet paper and promptly went and sat in the car. I now have extra clothes in my car and wipes and spare underwear and body spray in my purse. I have now found out that the Salmonella caused the IBS -D and damage to my stomach and intestines. I also have Dumping Syndrome along with the IBS. I am currently on a elimination diet which has been very tricky since I have Type 2 diabetes and had my gallbladder removed in 2000.
I ordered the LMNT samples not thinking it was any different than what I’m using. I was shocked at the difference. Thank you, I have a urostomy so obviously fluid is super important for me.
After having an ileostomy for 39 years, I had an unexpected leak/mess-fortunately, I had an extra pouch in my purse. That did not take care of my wet clothing, but I was wearing black and no one could tell. My husband of 60 years thought I was heroic the way I handled my problem. So instead of feeling sorry for myself, I felt loved…so much a better feeling. 😊
Only just found your page. I’m 9 weeks in on having a stoma. Thank you so much for all your help . I really appreciate finding you 👍
Thank you. I get so much from your ostomy experiences. It's comforting to hear what others have gone through. Lavender! Great idea.
Being an ostomate. These are moments you highly possible you might come across. It is a sharp learning curve and again it take courage to overcome. It is best understood passing the scenario realistically. 😊 it is what it is. It takes experience to overcome this oppression 😊
I always carry spares of everything in my man bag I've had leaks in public I'm only 15 months post Op things will get easier great channel maggie
One of your best videos. Thanks precious Maggie!
I was enjoying a birthday dinner in lanzarote when i felt a warm gush down my leg and all over the floor and in my shoe (holy shit!). I was mortified but was luckily sitting outside. I ran to the toilet holding the bag against my stoma while my sister was left explaining to the waitress...omg. luckily i had black loose trousers which dudnt show the carnage too much. I had to walk home on the beach in the dark...dripping all tge way even though i had cleaned up as best i could. Not over it yet!!!! Cant go back there...
😢
Have had similar experiences. It's really tough and I wish I could get over it as well as others do.
I ordered some LMNT based on your last video. It’s arriving Saturday. Looking forward to trying it. 😊 Your reviews and other reviews are almost all good.
I carry a double-sided case I purchased from Amazon for my pouches and flanges on one side and on the other zip side, I carry all my liquids.
My on the go items are M9 drops, M9 odor elim spray, mini poopouri (beach bum scent), adhesive remover spray, stoma powder, scissors, several mini compressed towels, a red biohazard bag w/seal closure, clear biohazard bag to discard my used pouch, packets of hand sanitizer wipes, 1 pair of latex gloves, 2 adapt lub packets, Huggies to go pack, sink suds mini detergent pack.
I think that’s all 😂. I rather have and not need than to need and not have.
I had my colostomy surgery July 10, 2024. My stoma name is Shiloh.
The hospital stoma nurse gave me a sort of handbag to carry emergency supplies, spare bags , anti adhesive spray,and stoma powder and a special pair of scissors when I got out of surgery, I've since added a packet of baby wipes,spare underwear, small rubbish bags and a strap with clips at each end togo around my neck to hold clothing out of the way, very handy but older men like me don't really feel comfortable carrying a handbag so it lives in my car
Thank you for this video Maggie !
Also if you're at a restaurant that has the plastic to go bags, get someone's attention to see if they could get a bag for you to use over your stoma to get you home.
Thanks
Thank you so much!!
I have packs everywhere.
In the car. In my handbag. In my office at work. And i check my bag every time i empty out.
I have a travel bag with everything I need when I travel. It’s saved me a few times.
When I first got my stoma I took stuff every time I went out but now it depends on if I am close to home then I don't take stuff but I will if I am going to be far away and can't make it home quickly. I keep a backpack with things in it and have not had to do emergency repairs other than a couple times (minor leakage). My worst malfunction was out camping and I slipped and got hung up on a tree branch which made things different but nobody was at camp so I just dealt with it in the sunshine at camp. I have a pouch from Stealth Belt that holds all the things and it unzips and can hang on a coat hook so that is pretty small and just goes in the top of my pack when I go on an adventure
I was fortunate enough never to have a leak in public the two years I had an ostomy for UC and celiac, mine happened at night, in bed, horrible horrible
I sleep with a chuck pad under me even though I have thick output. I don’t want to take any chances.
I have the bag that Convatec sent me with supplies. Since it has the handle and a hook, I can hang it up in a stall if needed. It has everything I need for an ostomy emergency: A piddle pad to tuck into my pants for an emergency change, "squishy gauze" (gauze roll, cut, folded in 1/4s, and in a ziploc bag), a small bottle of saline solution (to wet the gauze), adhesive remover, , stoma paste, stoma powder, skin protectant spray, hydrocolloid skin barrier, flange, ostomy bag, silicone tape, q-tips, scissors, hand sanitizer, allergy meds, pain meds, and disposal bags. I keep that bag inside a drawstring bag that has a change of clothes (or 2) and a full first-aid kit.
I have had to use it in a YMCA locker room at a gymnastics meet before. DIdn't know I had leaked until I was in a stall and stood up and saw output on the floor. I texted my brother to go to the car and get my bag and give it to a friend (who I had texted to make sure she would get it from him and bring it to me :) She actually stopped in the locker room first to check on me, then went and got it from him. I had only had my ostomy for 8 months at the time, and this was my first "big" outting since being fully self-sufficient ... and I was still tweaking my routine regularly.
I had my bag fall off in the Doctors office. They got me into an exam room really fast.
God Bless You!
You have taught me so much. Thank you!!!
Can you please do a video on how you and if you deal with noisey Ostomies?? Iv had my ileostomy for almost 3 weeks now and it gets sooo noisey its embarrassing. I've heard you can get a little thing you put in your bag that helps.. not sure how good they are though. Thank you for your videos. They help so much❤
Hi ,you are perfectly right ,accidents always happen when you wear white ,fortunately for me I haven’t got a stoma but normal bowel accidents still happen believe me I’ve been there recently and like you say you think everyone is looking but in fact no one one is .The public toilets weren’t the best but at least I had plenty of tissues and hand sanitizer and managed to clean up and get home .my underwear I flushed down the toilet.😅
God bless you always ma'am,,and and a complete healing for you ❤️
I had that happen In a restaurant bathroom. I had an illeostomy to save my life due to cancer. Yes, it was embarrassing! My friend was in the dining room waiting for me. I now have a permanent colostomy and hope that never happens again!
I add tagaderm tape to the edges of the flange, works great
Half way up a mountain in Greece my bag fell off 😢, so embarrassing, turns out it was too hot and the glue melted. But i survived and we had a lovely holiday, i carry a little makeup bag with my supplies in and it's saved me. ❤
Since my pan proctocolectomy surgery in February I have learned that there is no dignity, there is only deal with it as best I can. By the way LMNT is excellent, can I drink more than once a day?
I would definitely check with your doctor, particularly if you have any issues with sodium! That being said, I've been drinking 2 a day :)
I have friend in Preston mn she has same thing both us was working together one night her bag burst at work she called up front asked me get her bag peroid pads until her daughter could get too store help her feel better now I really understand the story ❤❤
I had my worst fear come true the second day after my proctocolectomy and permanent ileostomy placement surgery. I had to get up from my recovery room bed for physical therapy and my Hollister bag completely failed, dousing my gown in green colored, liquid waste (I had a small can of grape juice with breakfast). I had a complete and total breakdown with tears streaming down my face. I was so distraught and mortified that I wanted to die right there. Needless to say, I am a loyal customer of Coloplast ostomy products to this day.
I had my surgery July 10th for colostomy. Thankfully, I haven’t had any issues whatsoever with my ostomy. I’m still learning and still new to this all.
How much do you feel looking back Zac's reaction that first night staying over has helped you gain confidence as you moved forward?
I know sharing with folk I am close to what my emergency plans are for 2 life threatening conditions are make me feel more relaxed when out and about as I know, someone else can help if I need ergo I am more comfortable sharing if out on my own.
Folex instant carpet spot remover works well on fabric stains
Thank you for the video..wish more people were understanding of any medical concern. Be glad it's not you!!!
You mentioned a stoma quilt. What is it where can I get one? I have had my stomach since Nov 2019. It has been the best thing I ever did
Thank you for sharing
I’m 7 weeks into having a colostomy. One thing I do in addition to carrying emergency supplies is carry 2 individual mini packets of “sink suds” laundry detergent to hand wash any part of my garments on the go should I ever get a leak.
Hi Maggie.. you are so pretty. You look like a movie star that comes out on one of the shows I watch. GOD bless.. I wish you the best.🎉❤❤
I don’t go very far from home. I hate having an ileostomy. I wish God would have taken me home instead of living with this thing. 😢
MY OPINION (PENULTIMATE VIDEO) AS AN APOLOGY FOR MAGGIE, TREATS HER WITH CARE, VERY SORRY, RECOGNIZE MAGGIE'S ANNOYANCE, AGREE TO RESPECT AND CARE
❤
I wish they could sell world wide
Your forgetting the stench is horrible
It really isn't if the person uses ostomy deodorizers. I use them with every empty and it completely neutralizes odor, but some are not aware of this product or they don't have access.
☀️🌼
❤🎉❤🎉🎉❤🎉❤🎉❤
🙏❤️🙂😎🌞✨👍
Can’t you just take an anti diarrheal before you go out
I’ve sat next to people with that bad and I’m telling you it stinks even if it’s not liking