Why Wasn't I Warned About This? | Things Healthcare Won't Tell You About Stomas | Let's Talk IBD
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- čas přidán 18. 06. 2024
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I wasn't warned that a stoma could fart. Can be rather embarrassing in public lol. There is just no disguising that sound !
This was the first thing that came to my mind!
I think people are confused sometimes because they here the sound but don't understand why it would be in front and not smell
@@zanneb6854 And speaking of smell, how about the "enhanced" smell that comes out of a shortened bowel. Wow, that smell can be pretty intense.
Lol! Mine is pretty quiet most of the time, but used to make a lot of froggy noises in the beginning, which is why he is called Kermit! If he does make a noise when I'm in company, I just say, "Don't worry, it's just Kermit, my stoma, wanting to join in the conversation" and laugh, and they laugh too! The most essential item to add to your kit as a new ostomate is a sense of humour (or in my case, a sense of TUMOUR) lol!
@@Its_me--Boo_Radley I found that since going whole-food plant-based about three years ago, the smell has got very much less. When I still ate meat and dairy it was truly awful.
Hey Maggie, I developed UC in 1989, and had surgery in 1992 in order to build a J-pouch. Wore an appliance for 12 weeks until it was reversed. Attended Paramedic school and one day a patient in the Parkland Memorial Hospital ER on the medicine side needed an appliance change. None of the nurses did not know what to do so I told them "I got this" and changed the appliance and earned the nurses respect.
Every time in hospital have to teach a few nurses on changing Ostomy.
@@moleybear yes! I have to as well. And no hospital or medical facility has the ostomy supplies and the floor nurses seem to think any size will do. Well no, too big and my skin will break down and will hurt. That’s why I dread being in hospitals. I can bring supplies from home for a planned stay, but what is one to do if supplies run out or the stay is unexpected. Up a creek unless someone can bring supplies from home.
Does the BM smell the same? I was wondering because when your ostomy explodes or leaks
I have some pretty bad intestinal problems and your channel has taught me that an ostomy is not the end of the world. Thank you sweetie. xo
Mine was a red velvet cookie. This was like a couple of months after surgery. I freaked out. And because my output was so red it made my stoma look much paler than its usual color and I was a panic. I immediately went to google and started googling all this stuff, because it was the middle of the night at this point and I wanted to figure out if I needed to rush to the ER. It took about 10 minutes, but it clicked. I had a red velvet cookie. My fiancé and I had a good laugh about it.
Me, Stage 4 Cancer and have had my ileostomy, for 3 years now, When I take Iron it passes in an hour and is Black, A Cherry Coke will make you think and remember it was Red Vines or a Cherry Coke that can scare you!
I watched your Videos when i got home from 8 months in hospital and learned a lot. Thank you !
As my wife was watching this (she has an ileostomy) she agreed with EVERYTHING that you said because she has experienced everything that was mentioned, and more. She got hers in 2020. Please keep up the great work!
Hey Maggie… my colostomy, Stella learned a new trick the other day. Let’s call it the Old Faithful during my change. It must have shot 12-14 inches straight up! I had to lmao cause it was shocking! Stella is funny! She’s been a blessing. So, if she wants to act up every now and then, it’s a small price to pay.
I’ve had crohnes for 17years. I was so sick throughout my twenties and thirties and I thought having an ostomy was the worst case scenario . I had a couple of weeks this past winter to mentally prepare and come to the realization that I don’t have a choice anymore and needed to get ileostomy surgery. No one ever told me that I could get Peristomal pyoderma gangrenosum. It has been a battle in itself. Other than the Ppg I feel great and wish I had gotten the ileostomy sooner.
No ostomy here, but I have worked with the supplies as I’m a former medical warehouse worker. And can confirm, ostomy bags from different brands or even different models from the same brand can be more or less noisy. I handled a fair few different kinds at work and not just full boxes but also individual bags as we also sent out samples to customers and those samples would usually be hand picked out of a regular box (that was of course marked so it wouldn’t be sent out to a customer and not have the correct amount in it) and put into a ziplock bag, and it was with the samples that I of course would notice the different feel and sound of the bags. Some bags would sound like a bag of chips and others would both sound and feel like just fabric. It was a significant difference between them. May have noticed it more as well, as I found out recently (almost 3 weeks ago) at age 36 (almost 37) that hey, I’m actually autistic! Think my autism helped a lot at that job though, that autistic eye for details came in very handy when handling medical supplies where even a small mistake could have a massive impact for the customer
I laughed at the seeing meds in your output. Makes me think of non ostomy people with corn in their poo or the whole mystery of how vomit always seems to magically contains diced carrot.
Yeah I wondered about sweetcorn too 🤣
Lol! Corn is the only thing I avoid with Kermit (my ileostomy). I did eat some by mistake recently and it didn't cause any problems so I'd probably be OK with it. The secret with any food is to chew it really well. My theme tune is the Chattanooga Chew Chew lol!
@@ShoshiPlatypus Chewing is so important, I agree with you. I made a mistake with eating too fast in a rush once and ended up swallowing a piece of broccoli whole. It was horrifying at the time, but is a bit comical now looking back at my predicament I made for myself. The 'trunk' of the broccoli had protruded out the stoma but the 'head' was too wide to pass. Had to remove the appliance and get in a hot shower and manually remove it.
I had a friend who had a ostomy and we used to laugh at some of the stuff that used to happen and everybody thought I was being cruel because we laugh about it but the problem is it just worked he didn't need to feel embarrassed about having one and he would tell me some crazy zany stories which was great like he used to say I have to go burp and I just laugh but thank you for doing the videos it's very information to a lot of people
You are inspirational for people who are living their lives with Ostomy bag……My BEAUTIFUL Sister In law had Stage 4 Colon cancer and had to live with Ostomy Bag and she was NEVER the Same….That was the first time I ever seen anything like this and in the Hospital I was Taught to help her with this…..She was so devastated and was never the same again…..Her cancer had Spread and she didn’t live long after that……This was Devastating to me I love this woman with all my heart and to this day I still miss her she was one beautiful woman…..
Watching from Virginia 🌹
I'm very sorry for your loss. It's amazing how wonderful people enter our lives.
Some know before going into surgery an others wake up with it.
The moment can be difficult to accept or manage. You don't have time for either process just trying to live it.
I do wish that every hospital had staff like Maggie to simplify the facts and cover so many aspects.
It's helpful before and after and just not available to us.
Please take care and thank you for sharing with us.
Maggie, I was never told how noisy this thing could be... I named her Mona! 7mos in and she's only misbehaved at home. Awaiting that embarrassing moment in public, where I'm going to have to explain.
So grateful for your posts. You were the one that prepared me for this journey. Will never be able to truly express how thankful I am.
If you put your hand over your stoma it should help to muffle the noise. At least it works for me.
@@miriambarnett2782 I wish. A thick stuffed pillow often wouldn't muffle it! Sometimes it's most like a repetitious cannon and many times I don't even know it's about to happen. Guess. IM GOOD FOR A LAUGH.
I was laughing Maggie because I relate to every single issue you covered in this video🤣🤣
I basically spent months just about hugging my stoma this past winter as I developed a cough from using too much bleach while cleaning .. it caused such an irritation which resulted in a cough. Since I do have quite a large parastomal hernia every time I coughed I tried so hard to support that area that I spent many hours with my arms actually trying to keep everything in place.. I no longer use bleach!!!! The ballooning.. yes!! And my dog has jumped on me in the morning.. luckily missed that area!!! Lol.. Discoloration of output.. yup!!! Ready to go to ER.. then remembered I had eaten cherry jello!! You are so right when you say unless you have an ostomy you cannot quite understand all this. Even the GI doctors, surgeons, etc.. thank you for this video.. I’m sure many of your viewers can relate!!
You are looking great!! Love to both you and Zak.. and the “pups”
❤️
I too got a hernia from coughing when I had covid. I hate it. I have to wear a belt when I go out so it don’t stick out. Yes I hold it every time I sneeze or cough.
Thanks for sharing such good info. While I no longer have a stoma when I did get it I think I was in shock and panicking. I had emergency surgery for severe abdominal pain. So when I had the surgery I was clueless that I had had my intestines cut and a stoma formed right next to the 9” incision. And, the stoma was concave. They basically told me what they did and said a nurse would show me how to take care of it and gave me supplies. I was in the hospital 9 days and no one came to talk to me about what it was all about. I was very sick, going through wound care and felt totally alone. What I needed I did not even know how to ask for it. I wanted someone who also wore a bag to talk with me. Not the nurse who handled teaching patients and not answering questions intelligently. I was lucky because it was reversed 3 months later. I suffered a lot of personal trauma those three months. - Diana
Love your videos, 18 months with my Illeostomy, haven’t felt this good in twenty plus years. Keep smiling.
🎬📽🎥xxHello Maggie I dont know anyone else with a colostomy bag .so am so happy l have your channel because sometimes l feel very lonely l know this sounds silly but l do .I know the shimmying out of the bed hahaha l dont have dogs but have 2 cats that paddy paw me right on my bag while am asleep it can be a nightmare. See am laughing just listening to you because you do understand .Thank you maggie for bareing all because you are helpping thousands of .people all over the world 💖😁💖👏🏼👏🏼👏🏼👏🏼👏🏼👏🏼
I drink peppermint tea and this seems to prevent wind sounds and ballooning.
I've had an ileostomy for close to 9 years now and I can soooo relate! I have so many comments and stories of my own I could share but I'll limit myself to the following observation: Hollister bags got a lot noisier when they changed the plastic a few years back (and they don't last as long as they used to too). Do you agree? I love your videos because I appreciate how informative, relevant, and honest they are! Keep 'em coming! 😊
Hi gorgeous Maggie!!
I am from Australia and have had my Ileostomy for 2 years now.
I found your CZcams channel when I was first advised that I would need to get an ileostomy. My Ileostomy was due to a motility issue from a redundant megacolon, so I didn’t really have a history of being really sick so to speak, but I had a long long history of chronic constipation and abdominal pain.
I knew nothing whatsoever about stomas when I was told this. It was overwhelming to say the least.
There was no information about Ileostomies due to immobility, they were all about IBD or UC etc. even now, it’s hard to find info on redundant megacolons and I was starting to think I was the only one. Obviously that is not the case at all and I have met so many Ostomates that had had the same condition as me!
Before my first surgery I armed myself with as much info as I could. It’s just the type of person I am!
And that was when I found you!!! Your channel and the information you have shared has certainly helped me gain the confidence and information I needed to be comfortable with my now permanent ileostomy. I have even returned to university and am studying to become a nurse. I can completely relate to your comment about the balloon in the morning. I can’t count how many times I have woken up shocked that it hasn’t exploded all over my bed. And then there has been the times that it has exploded all over me and the bed and my wonderfully understanding husband.
I think the biggest challenge I have is having to empty my bag in public toilets where the toilet paper is super thin, making cleaning the inside of the bag very difficult. Also having a very full bag in public and it being very very noticeable.
I am like you and am very tiny particularly since becoming very unwell, so when my bag is full it takes up a lot of room in my abdominal area and down towards my crotch.
I am sure I am more self-conscious about it than other people. They probably don’t even notice . I also love that you have named your Stoma, we have dubbed mine Bilbo Baggins.
Again, thank you for sharing your journey and all things Stoma related. While our stories se different, it really does help us as a community do you know we are not alone in this.
When I first got my ileostomy I didn’t know anyone that had one nor did I know anything about them, so finding people like yourself and the beautiful Amber from ostomy diaries, has really helped me understand more about living with an ileostomy and it becoming a normal part of my life.
Without my ileostomy I would’ve died l, so I am truly thankful that modern medicine has given me the opportunity to grow old and see my children have babies … Well hopefully anyway.
Thank you, from the bottom of my heart, Mel.
A brilliant comment. Although my history is very different from yours (UC followed by colon cancer) I can identify with a lot! I am like you in that I always want to find out everything I can. It really helps to be informed. I was only thinking again today how grateful I am to be living in modern times and getting Kermit (my ileostomy) without whom I would have died, too. I think I must be tough as old boots, despite my hubby always fussing and saying I'm "not strong" - I have had ME (CFS) since 2007, UC (misdiagnosed as IBS) all my adult life, colon cancer in 2015 and breast cancer last year - I am still here, still smiling, and doing pretty well really.
What I wasn't prepared for was that after having an ostomy for a year, my weight and abdomen shape changed and the supplies I had used no longer worked. After leaking several times, I had to contact a wound care nurse who told me I would probably need to change barrier type (to convex). And then everything was fine
My exact experience too. I tried all sorts of things - rings and seals and so on and nothing worked - they just made it worse. Going onto convex bags solved the problem immediately. I am getting a lot of pancaking these days though, because I am waiting for my third parastomal hernia repair. I lost a lot of weight over several years (intentionally) and my abdomen is very floppy with excess skin and the whole area is very unstable. They are going to do a tummy tuck when they repair the hernia. I've been waiting nearly 3 years for this - UK waiting lists are absolutely off the scale and I have pretty much resigned myself to it never happening now!
The skin barrier actually works great if you have adhesive allergy! When I, wearing bandaids for more than 2 -3 day I get a rash around where the adhesive was. Sometimes it can can red and itchy. By watching the channel out of couriosity you brought it up! Works great and it’s now on my medical charts.
I recommended you to a carer of mine For a young family member. I said you were infinitely more useful than any Stoma Nurse I have ever encountered. You’ve given better advice over the years and helped me with my problems without even realising.
Thank you so much for making this video. I don't have my stoma yet but will be getting it this fall. My colon is extremely slow moving so the best thing is to remove it. All your video have helped me so much and my anxiety has been better knowing what I'm in for. 💜
Wishing you all the best for your upcoming surgery. Read my comment for my story - I got mine in 2015. Give your stoma a name - it really helps! He (or she) will be your little friend for life and it's good to learn to work together and not fight it. There's a really good stoma forum on the Inspire site - I am no longer active on there but there is loads of fabulous advice, friendship and a huge amount of fun as well. It helped me no end in the early days - I joined some time before I got Kermit so I was a lot more prepared when the time came.
@@ShoshiPlatypus I used the Inspire support site too. It was a huge help!
I had colorectal surgery in February this year. You have helped me more than anyone who has helped Ethel’s few weeks. Thank you
Blueberries ... no matter how well I chew them, come out looking the same as they went into my mouth, lol.
Among so many great videos, this one is a beauty. It addresses a great understanding of basic human nature in the specific context of having an ostomy. Second to hardcore technical stuff, this is just so important. To know that your safe just walking around living your life, there is just no big neon sign following you. Solid gold! Thank you!! - Tom
Loved this video, so on point with everything xx
So good to see you again! Totally can relate!
All of these are sooooo relatable thanks for sharing Maggie 👌
Nice to see your vlog pop up to watch. Glad you are doing reasonably well.
Grateful beyond words for your videos and inspiration❤
Thank you, Maggie! You’re baking the journey toward surgery easier.
Thanks for this informative video. I sure appreciate it. Still waiting for Zak to share his experiences too.
😀👍
I have a temporary stoma due to rectal cancer. One day I was changing my bag and saw something about to come out of my stoma. It was a piece of french fry. I watched my stoma push out a french fry. Lol
LoL I laughed at this and had to hold my belly!
Thank you for sharing. Very informative and encouraging to others. 💗
Hello Maggie, Thank you for sharing this video I can really relate to some of the your experiences with an ostomy it made me smile because I thought I was the only one dealing with that. Continue to share your knowledge it will help someone out there.
My mom had cancer of the bladder and had it removed in in 1980 . There was 1 Rn at the hospital that knew how to change it and train me on the care of it. After that any time she was admitted I’d have to explain how to care for her. Then she was in a nursing home because I just couldn’t take care of her by myself. But they have a very good nurse and she had care for 1 patient she did ask me some questions but I could count on her. I was there everyday
Hi Maggie 😁
I don’t have an osteomy but I really like your videos because you’re so friendly and dynamic…. And I’ve learned so many things thanks to your videos!
You are not the only one to newly notice the bag ‘crinkling’ I found a thred somewhere recently where several brought it up as an issue!
Maggie, I can so relate to this video. I learned a couple new things but most I have definitely experienced. Thanks for the laughs. Love your videos. Take care and God bless you.
This is a great blog and I’m sure you have helped many. My husband has one and everything you have talked about he has experienced. Thank you.
Maggie I have learned most everything I know about my Ostomy from you. Thank you!
Everything you said about the stoma is so true! It amazes how far my stoma will shoot out if I sneeze 😆 makes it a challenge when I’m changing the bag because I’m waiting for it to slow the output to apply to dry skin.
Maggie thanks for doing these videos your best sweets!!!
Thank you for sharing your experience and knowledge Maggie. I also have Crohn's, diagnosed about a year ago, but was first thought to be severe Ulcerative Colitis. I started out with what was planned to be a temporary colostomy, while receiving Remicade infusions, in the hopes of shrinking 5 fistula. I ended up having to have my colon and rectum removed, and have had an Ileostomy since March of this year. It's been a struggle, to say the least, however finding you and your videos here are helping me to move toward becoming more positive and hopeful again. Sincerely, thank you and please keep up your great work.❤️🙂
Ballooning oh yes. I found a product on Amazon. Ez vent. I open the plug and put a washcloths over it at night. No more Ballooning. Love the product. Love your videos Maggie glad to see your having a great summer. ❤
THE SHIMMY! YES! 😂 That moment of realisation is definitely an oh sh!t moment lol my cats love to sleep on my stomach and I'm like pleeeasseeee noooooooo 😅
Another thing to help with the crinkle (with sensura mio at least) is to fold the bag and use the top velcro. That's what I do for uhh.. certain times.
I also get capsules with powdered paracetamol because I found the pressed tabs were not working out so well!
I use Sensura Mio bags too (convex ones) and always tuck the tail of the bag to the top velcro - it's a lot more comfortable as it doesn't scratch the top of my leg. Those bags are awesome, but they can be a bit crinkly at times. I don't worry too much though - being nearly 70 and having been through so much in my life I hardly worry what people think any more and I always joke with the nurses when they protect my "modesty," that it went out the window years ago haha! We also have 2 cats and they like being on the bag because it's warm. The worst for me, though, is when they stampede all over my left breast which is always tender since my cancer last year! Always something, isn't there...
I wish there had been information like this when I was going through stage 4 colon cancer. They took a section of my colon out and had an osteomy for almost a year. Then I got reconstruction surgery. Boy, that was and is bad. I definitely can relate to a lot of your videos. Thank you for all the information. ❤
Thank you Maggie these vlogs are helping me so much I've been waiting two years for a ileostomy after a failed sacral nerve stimulator but should be having in next few months you are really helping me prepare my mind so thank you from the uk
Thank you for the information
Over the many years of having an ostomy I’ve had a few overnight explosions for sure messy. But not the end of the world.
I’ve learned to eat for what suits my system and when to eat my final meal of the day.
Finding chucks of food in bag guessing what it is. With my stuffed insides, the chunks come with teeth marks. You body will ch Ange the products will change. Every so often I have to retrial all brand products as products stop working. You empty bag is emptied and at times need emptying minutes later. Never let your stock too low before orderingmore stock. When flying put supplies in carry on, to avoid lost check in luggage. It’s ok to use disabled toilet to bag change.
Thank you Maggie. I can so relate to EVERYTHING. It made me giggle. xxx
Been 4.5 yrs since ileostomy , my life is to the better. Have had 3 parastomal hernia surgeries. Had to move stoma from right to left side. Rare skin issues. Have watched you a long time. Thanks for your honesty
i would love more videos like this !
The main thing I identify with is what you call the Balloon, and which I call "Having a Hindenburg Moment" lol! I am often amazed that I am not floating somewhere near the ceiling when I wake up in the mornings. What usually wakes me is a feeling of pulling around the flange of my bag, and it's so full of gas that the sides of the bag have little wrinkles! I make a dash for it and hope I get there before a major explosion haha!
I have never held my belly when I sneeze! Never heard of that one before! I have a recurrent parastomal hernia that has already been repaired twice and I'm now waiting (interminably - NHS waiting lists being so horrendous here in the UK) for it to be repaired for a third time plus a tummy tuck to tighten everything up. I wear support garments.
I don't think I've ever sneezed while the bag was off. I did have a funny experience once though - I'd been really poorly (poss just after coming out of hospital one time) and my hubby was dong the cooking. He hadn't cooked the peas properly and they were really hard (he's NO cook lol!). There were some whole peas in the bag. I was changing the bag and I felt some discomfort and tightness around Kermit (my ileostomy) and suddenly a pea shot out and hit the bathroom mirror, followed by a big explosion that had been building up behind the pea!!! I was tempted to tick Kermit off and hit him on the head with a dry wipe but couldn't really be cross with the little fellow as he was only doing his best, and it was all my hubby's fault anyway!
I had ulcerative colitis all my adult life (misdiagnosed as IBS so pretty much untreated). I had my first bowel cancer screening test when I was 60 and it showed blood. I had a colonoscopy and the UC was diagnosed. They told me I would have to have regular colonoscopies after that as I was more at risk of developing colon cancer. 18 months later (2015) I had the next one, and they found a large very aggressive stage 3 tumour that had appeared in less than 18 months which "shocked" my gastroenterologist (his words). They removed my whole colon, and I had 6 months of really aggressive chemo (awful), and apart from all the trouble from the hernias (the first one caused an obstruction and after the 2nd repair surgery I got sepsis), getting Kermit has changed my life 100 percent for the better. It's been liberating, as I know you will understand, having Crohn's.
I got breast cancer (totally unrelated to the colon cancer) a year ago and after a lumpectomy and radiotherapy I am fine. Just Mrs. Lopsided now lol!
Wow, you have been through a lot. Can I ask you what a Kermit is is?
Wishing you all the best!
@@thunder32 Thanks - yes, been through a lot, but still smiling and carrying on! Kermit is my stoma. I chose the name because he used to make little noises like a frog when I first got him. Named after Kermit the frog in the Muppets.
Oh, I am so sorry for you. My heart breaks when I watch your videos. You hide it well how much you really suffer every day of your life. You have a good outlook and you are very beautiful.
The Stealth Belt comercial in this video was sooooo interesting! I have a very curious mind on everything 😆 It really was sooooo interesting! 👍🏻
I love your hairstyle in this video! 💕
I was diagnosed with Crohn’s 20 years ago! I took Pentasa for years, when I moved and got to see a new Gastro Dr, he took me off that right away! He said that drug was a total waste of time and doesn’t do anything to treat Crohn’s! 🤦♀️ Now I get monthly Stelara injections and they are working great for me!
Always love to see your videos drop in my feed ❤️
Thanks for sharing and educating! Do you have any info / tips / channel recommendations on an urostomy care?
The crinkling drives me nuts. My skin is always sore. Thanks for the video it was great.
Oh yes. To all this. My experience. Orange juice in, orange juice out. And if you eat fruit loops, whoa be prepared for a rainbow explosion. And veggies I can’t digest well, no matter what, when I eat veggies, I always have bits of undigested veggies in my bag. (It’s fascinating the size of things that can actually make it’s way out into the bag) And the morning balloon. Whoo boy. And the smell when I’ve made it to the toilet to empty my bag. It stinks something fierce and I have to turn on the bathroom fan thing to dissipate the smell. Having an ileostomy is not for the feint of heart. And the amount of times Regina (that’s what I named my stoma-after the character from once Upon a Time, because she can be just as temperamental) has exploded during a change. And sometimes a bag change is like a bomb went off and I’ve had to clean up a mess.
You totally should do more videos like this! I don't have a stoma but you have some very interesting little nuances 🤩😘
Seeing medications undigested in your output is so funny. I don't have an ostomy but I have severe Crohn's with dumping syndrome. When I need a steroid I have to take prednisone for a few days to calm me down then switch to Entocort because the Entocort wouldn't open until they hit the toilet (if you get my drift). And Entocort is much too extensive to be, literally, flushing down the drain. I still take the liquid form of things like Clarithromycin, a huge, apparently undigestable pill for someone that gets maayybbee an hour before it comes out the other end.
Hi I'm just over 2 months post Op weight for me I've lost 3 stone in 12 months since diagnosis of bowel cancer I can gain 4 pounds in a week then only to lose it in a couple of days . I tend to pee a lot more now . Also I eat most things apart from sweet corn and mushrooms keep making the video so informative 👌
Awesome vid 👌
I do know what you mean about the morning balloon, it's like the Goodyear Blimp. What I do is set my alarm for 3:30 am so I can get up and empty my ostomy bag the when I get up at 7:30 AM it is not that bad and I empty it again. Live and learn.
I didn’t realize what an expense supplies are even when my insurance pays 80%. Looking over my first statement (40)
1 piece pouches were $500 billed to my insurance. Sometimes I shop around for supplies and find a better price than going through my insurance
Here in Australia I just got my order the account was $396.43 I had to pay $5.00 Medicare pays the rest
I have to laugh at your saying how we don't know an experience unless we live it. Not medical, but my husband died suddenly. Just yesterday I had a woman, married to her living husband, telling me she knew exactly what the experience of going through your husband's funeral and living with him gone suddenly, children grieving, was like. Not knowing her situation, I said I was sorry for her loss, assuming she knew. No, she read a book last spring where the main character's sister's husband died so she knows what it's like to live it now. My friend said the look on my face was something she's never seen before....a combo of complete confusion, anger and being about to burst out laughing all at once.
COUGHING too! Its like an instinct for me to always grab/hold stoma during any cough or deep clearing of throat as well as a sneeze! I just laughed at that part! And during bag changes im grabbing a towel/tissue to cover it when i have to cough too!
Maggs!!
Still a Fan, but I haven’t had time to comment in a while. Just wanna say, (although you’re talking about some very serious and practical things from your own personal experience) THAT YOU LOOK GREAT !, 🤩😍
you’ve gained back some weight and your color so much better, bravo for you !
Love you Both (but mostly you)
God Bless💐💐💐🌼🌸🌺🌷
An idea to keep in mind. I ALWAYS wear tank tops that have a bit of compression (lots of color choices) to keep the bag snug and can help with lowering the bag profile. It has helped with that feeling of wanting to keep hands on the belly, and it doesn't cut into or dent the bag which i did find that the bike shorts can do. I do like the bike type shorts also but found over time i transitioned over to the tank tops 90% of the time. There are actual compression tank tops but i found them limiting in color choices so even though i do have some of those, i don't use compression tank tops exclusively Basically I just kept an eye out for tank tops that look a bit small for the size they say and i checked how stretchy they were and if they would fit snugly. When i found a brand that worked nicely i stocked up on the available colors and a few extra in the basic white and black.
This is a great tip and that is what I did when I first got my ostomy (and often still do)! I got aeropostale camis in every color (long but thinner camis) and they smoothed it out well!
I have a very active stoma and it's affected by saccharine. And i put my hand over my bag as soon as you mentioned sneezing 😅
There are times that I will drink water and my ostomy will decide that I should go from an empty pouch to a completely full pouch in less than 2 minutes ... and it is NOT liquidy. BTW, my pouch can only hold 2 pounds if it's pretty solid and less if it is looser.
Hello, I've had my ostomy for 8 years now, and my weight fluctuates sometimes from day to day like a pound or 2.
I too got extremely afraid the first time I saw red in my bag. Called and was asked if I ate anything red, but funny thing that happens like if I have to go the er for some reason the nurses get alarmed when they see red lol... I'm like it's fine I just drank a red drink or even red sauces will cause it. Ballooning is definitely frustrating, luckily that doesn't happen often.
Where I got my stoma I had been in a coma for 2 months, however subconsciously I guess I knew about it because it didn't bother me, however no one ever showed me how to change it, in the hospital the nurses apparently didn't either because I had so many messes and they'd not be too happy with me ugh
Lucky for me , when I went home, my sister in law had worked as a cna, which I didn't know until I called saying help! So she showed me exactly what to do.
My wcn only came in to take care of my incision and would change the bag that was it.
I have experienced pretty much everything you have but doesn't bother me much anymore except I am still like omg hopefully nobody can see my stoma and bag lol.
But I really do appreciate these videos because even though I've had mine so long there are still things you learn from others, so thank you so much 💖
There's chewable birth control that absorbs mostly in your mouth and esophagus if you end up having issues with absorption of typical oral contraceptives! Birth low loestrin and progesterone only have chewable versions!!! Just a hack I've figured out in tubie/ gastroparesis world of things!
I don’t have an ostomy but I have a g-tube that is a drain for my stomach, it’s 99% paralyzed and the g-tube drains stomach acid and I can have liquids because they drain into the bag. I use a Coloplast Conveen urine bag. I can relate to the waking up with a mess in bed, the balloon from air, and many other things. I also have a j-tube which is used for all my nutrition, medications, and hydration. And I use ostomy skin barriers and diaper rash cream because I get pure acid around my j-tube it’s been so bad I’ve been hospitalized from the burns
I took 16 Pentasa pills a day for years when I was younger. Just the thought brings back trauma lol. It definitely didn’t work and I later found out at the Cleveland Clinic that it only worked for like 3% off people. Ugh 😩
I don't have the ostomy yet, appears it's going to be an ileostomy. I can already relate to the rapid elimination/food and certain meds coming out just as they went in, etc. It takes just over one hour for whatever goes in to start coming out. For whatever reason, neither the doctors nor the pharmacy can get it through their thick skulls that I cannot take extended release meds (not just for this reason) and they keep giving them to me.
Mags hey,
Hey everything you mention...I will agree with you!!!
Especially balloning...I do a slide walk out of bed!!!
Thanks for sharing! I cared for my brother for two years with his ileostomy when he lived with me. I've seen the rainbow. The hot cheetos did scare me. I was not ready and he had a field day that day
Yes….the famous sneeze! 😂 So true.
quite right on the sneezing my friends think its funny as i do hold my stoma but i also let my leg fly out (the reaction to the action) once had a discussion on the pills going right through into the bag with a doctor as he was adamant that your stomach acid would dissolve them! very flued output see if eating bananas will work as a thickener
I heard that one before. Brought a sample. Lol
The amount of bile we produce and the spasms our gut have when food is introduced, can "push" quickly.
In my case, my pancreatic condition caused. The meds provided help but getting that diagnosis was a struggle.
Dixie gets sooo excited in the mornings that Maggie had to mention that part twice in the vid... hehehe
Eleanor Roosevelt once said you shouldn't worry about what most people think because most people don't think. I have found like you said most people do not notice you have an ostomy. You bring such great joy to your journey and the journey I started almost 4 years ago - Thank you
Hi and as for that pentasa I am on it now for chron's and I see the beed as well in my stool is that a bad thing???please let me know if I am to tell the doctor. Thank you for sharing with us. The the help and advice..
I was having x-rays the other day and I do not thank the technician know what a ostomy was and they where trying to make take it off the only thang I find weird and my docs don’t know is that I have know out put when I sleep I can basically wear no bag when I sleep but it can fill up instantly when I wake up
I probably shouldn't be laughing so hard at what an exploding ostomy bag full of "farts" might look like either. I guess if I had one I would know it isn't as funny as the image in my head.
It's actually kind of funny sometimes! Unless you're in a situation where you can't release the air quickly because it's very uncomfortable and can cause your seal to break or lift.
Actually the very best way of dealing with these situations is to laugh. I always say that a sense of humour is an essential piece of kit for every ostomate. That little red fellow is going to show you pretty early on just who's boss and you have to learn to keep him happy and not insult him or he's sure to get his revenge at the next most inopportune moment. Kermit and I get on pretty well these days - he behaves himself very well most of the time. I tell him he's a good boy and thank him for saving my life, and that seems to keep him happy!
The crinkling would bother me a lot. I remember being a toddler and disliking the crinkly sound of diapers. Then sometimes you have it with pads, which feels mortifying. I worry about it with my son’s pull-ups, because most five year olds are fully potty trained, and I don’t want anyone to realize that he’s different in that way. I have found that Huggies diapers and pull-ups are quieter, are are Kotex pads.
Joliet er is the worst for crinkle. Their bags have had a change to them in recent months that have made it worst. I hate it now. I just had my third parastoma hernia repair and had a new ileostomy done on the opposite side of my body and want to switch brands because of the crinkle.
Thanks
❤ I am so sorry I missed this! Thank you!!
Fantastic
I have alot of same output issues without ostomy just missing my illiam section.
I have 3 dogs and a cat. They also wake up when I go potty
Every night I have to hook up a foley bag to the ostomy bag because if I don't, the bag will leak all over me and the bed. Is there a bigger pouch out there? Or why does this happen?
Can you get gas in your urostomy bag if you are drinking lots of pop and energy drinks? Because I get air pockets in my urostomy pouch.
Carbonation has to go somewhere. I stopped drinking years ago stressing kidney function.
Parastomal hernia. No one even mentioned I would absolutely get one. Now that I'm reversed this suckered hurts and I look pregnant.
If it's that painful, your surgeon should repair to stop the suffering.
Have you told them?
Hope you find help
@@pjk1714 they claimed to have fixed the parastomal hernia and another large one in another area without mesh, when i was reversed. But it has never really gone away. It protrudes and pulls. I do where a wrap but that makes my stomach hurt. Always screwed with crohns with or without am ostomy. I had it for 3 years which my surgeon said I shouldn't have had that long. Oof. I do have an upcoming appointment
At our local ileostomy group once, we had a colorectal surgeon as our visiting speaker and he asked for a show of hands for who had a parastomal hernia and most of the hands went up. I got my first one only about 18 months after my surgery. It caused an obstruction and I was very poorly in hospital for 3 weeks. The repair was an emergency and failed within a few months. My second repair they put mesh in. I was in hospital for nearly 3 weeks again, and then a couple of weeks later I was back in for another 3 weeks with sepsis - a huge infected haematoma in my abdomen. Nearly died. Of course, that repair also failed. I was referred to another hospital for 2nd opinion and should have had my surgery back in 2019 but got lost in their system for months, then Covid hit and I'm now stuck in a horrendous NHS waiting list and pretty much resigned to it never happening. Most ostomates will get a hernia because the stoma makes a weak spot by penetrating the abdominal wall. It's a bit rough to still have one after a reversal, though! I do hope they will be able to help you.