Things My Stoma Nurse Never Told Me
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- เผยแพร่เมื่อ 12 มิ.ย. 2024
- Hey GutSquad! Today’s video is full of answers I’ve found to those pesky questions for which my stoma nurse didn’t have an answer. I’ve had a few stoma nurses and they’ve all be amazing, but experience is the best teacher and learning how to cope with specific ostomy issues from ostomates themselves is a great way to go. Discussion forums, Reddit posts, Facebook groups, and just living daily life with my stoma have taught me more than anything else. Please leave your own “Things My Stoma Nurse Didn’t Tell Me” below, I’d love to hear them!
Hi everyone. It is best to get involved with people that have an ostomy - ostomy groups and videos and chats. There are thousands of us out there who have colostomy ileostomy urostomy.
We are all here to help.
how old r you?
I would love to make ostomy friends. I'm new at this. Friday will be a month I've had my ostomy.
Very helpful. As a nurse (not an ostomate), I’d recommend this video to my patients.
Thank you so much Mary--that means a lot to me.
Also if you drink a cup of hot coffee about a half hour before changing or cleaning it helps your stoma have a movement and reduces the possibility of movement as you are messing with cleaning it or changing it. Hope this helps someone
Marshmellows sloooow it all down.
@@sidhudal
So do fluffernutter sandwiches.
On white bread only, spread smooth peanut butter on one piece and marshmallow fluff on the other piece.
Works great.
Well, unless I'm on antibiotics.
Not even a fluffernutter sandwich helps that much.
I'm allergic to coffee so what I will do is change it in the morning and since I haven't eaten in a few hours nothing will come out (unless I ate late or overate)
@@gimygaming8655 you can drink warm water or hot tea. Anything hot
@@pamelamayeaux7458 oh good to know!!
As a home health nurse, I appreciate all of your tips, and experience! Thank you so much!
You are so welcome. I had zero info or help afterwards. I had to learn everything on my own. Knowledge of maintaining isn't really out there, especially from the medical field. But it's not something they can do really, it's a hands on thing , from those who have been there
I am 8 weeks into my ostomy. I had a great ostomy nurse in the hospital. But like you mentioned she hadn't had an ostomy. So for some of the practical day-to-day stuff she would respond "You'll figure it out, everyone does". This is the first video I've found (I'm sure there are others that I haven't found) that did not only explain the TP splash back remedy, but showed it! Not only to help with splash back, but also just showing your positioning, etc. Seeing it done by someone else has been the single most helpful thing for me to this point! Thank You!! No colon, keep rollin'!
Right I have had mine since May 2nd and the Dr just released me to go back to work this week on the 28th but I'm not on any restrictions because it's been 8 weeks but I do maintenance at work. I really think I should have restrictions. They don't have a bag so they don't know. Thank God my mom n other family members have it so I can call on them if I need help. They told me to be careful because it could mess up on me at work. How embarrassing would that be smh
Seeing her emptying in to the toilet by straddling across the toilet seat was new to me. I have been an Ostomate since August 1994 -.almost 30 years now. I find it much easier to kneel in front of the toilet and hold the bag over the rim. I always add toilet paper to the bowl first. Before emptying I tip some water via a jug into the bag opening, give it a swish, then empty into the bowl. I then give the bag another swish with the water jug until the contents of the bag are clear. Hope it helps 🎉
I om 8 year
To help with pancaking with my Ostomy, I use a little baby oil in my bag before applying it’s great! 😮
Hope you are doing well, a year on from your comment. I'm 8 years in, and so grateful for it. Changed my life for the better! Getting help and advice from fellow ostomates is the best thing - stoma nurses are great especially at the beginnning to get you started, but for day to day stuff there's nothing like experience.
Super great info. I am 64, had iliostomy on march 2021, super great health condition, motorcycle adventurer. Found colon cancer, and know with iliostomy, my life has changed 180 degrees. I am very thankful of the information you post on your videos, it is so helpful. And congratulation for your breveness of making this videos. Thank you very much. Regards from Mexico
And, so you know, after 8 months of my surgery, today I continue with my adventures, this past weekend made a 6 hour off road ride, I felt great, but before ending my ride, my wafer came off and I felt how lots of stool was coming out on my body armor, pants etc. But I was so happy thinking that that was just uncomfortable, my health is perfect, and I accomplished a great adventure.
What are the prices like to purchase your supplies in Mexico?
Well done! Having an ileostomy shouldn't change your life and it's great to hear about your motorcycle adventures. Getting Kermit (my ileostomy) 8 years ago was liberating for me, releasing me from being tied to the toilet with an inflammatory bowel disease! It sounds odd to be thankful for colon cancer, but I am, because it sorted the problem! My life was also changed 180 degrees - for the better!
Brava skin protective pads are a LIFESAVER to prevent pancaking, especially severe pancaking as the wafer adheres to the pads MUCH better than your skin, so even VERY firm stools wont typically be able to cause separation. This is very helpful info, thank you!
Oh my goodness you are a God send! I am 1 week into this and wow! It was an emergency surgery we were trying other avenues in 2 weeks + hospital stay. 😮 I recd 3 , 30 minute lessons as a prize! So I am not sleeping yet maybe 2 hrs a night, when I accidentally found YOU! Thank you thank you thank you
Hi Brenda, I’m so glad you found the channel. An emergency surgery is so hard on the body and mind; I sincerely hope that your recovery gets easier. With time, I’m sure it will. Sleep will also come with time. At first, ostomies output a lot because your bowel hasn’t adapted to re-absorbing enough fluid in the small intestine to make up for the loss of the colon (or, in some cases, parts of it). Adding that nearly constant output to the immense pain of abdominal surgery, sleeplessness is usually the hardest part of being post-op. I promise that things will get better. Please let me know if you need more advice. I’ll do my best to help! 💜
@@CecilyLivingBeyondtheBag I thank you again for the advice. Still haven’t a nurse promised me ended up back in the hospital with straight blood no mix and the hospital where I had it done is 25 min away when going over speed limit! All regular doctors were in shock. No one had ever seen such b4 . They couldn’t after 3 days of observation figure it out. I am supposed to see the surgeon who did the surgery in the morning at 9:00 now my ride says they can’t take me after a weeks notice. They told me 20 minutes ago! And he was to determine if another surgery is necessary or medicine or home nursing. Geese.
Yes you are a Godsend! I'm hoping to see a change with these new tips!
thanks for sharing. I have had my ileostomy for 9 years now. I have it under control, but new people need your insight....
Changing the bag first thing in the morning is the best time, before you eat anything.
I’m not sure you can put a blanket over it . Wind it In
Brand new osomate, about to do my first solo bag change... THANK YOU for this invaluable information!
Since i am new to this club, I found your helpful hints to be the best I have seen so far. Than you!
there have been times when I had nowhere to go but behind a dumpster and empty out the bag. It helps to have some wipes or paper towels in your car to keep from shitting on your shoes. This is real.
I'd heard that Marshmallows could be used to thicken output but hadn't thought of using them before a pouch change. I think it could also be used beforehand if you wanted to take a 'naked' shower as it could lower the output while the barrier and pouch are removed (I try to take showers first thing in the morning when I planned to change the barrier anyway and last ate a few hours before bed)
Thank you so much for the tips your sharing. I became an ostomate a month ago and I'm learning so much from co ostomates and their experiences that have proven so valuable. I'm learning something new from every video that I've been watching that only come from experience not theory. Looking forward to more posts from you !
Hi Angel! You are so very welcome, I am really happy that some of my tips could be of use to you. I am a firm believer that when it comes to ostomies, the best teacher is experience. I remember when having a stoma was new to me and everything felt so foreign, but I promise that everything from bag changes to eating right to sleeping soundly and leak-free will become second-nature with time. If you're not already following Ostomy Buddies and The Real Ostomy Support Group on Facebook, I would highly recommend joining those groups. They are full of encouragement, advice, and are also just a great place to vent. Wishing you the best of luck; please let me know if you ever have questions. I'll be happy to answer them as best as I can. ❤️
So glad I just found you by accident. Thanks so much for doing this. I am one month in on this unexpected life changing experience. So nice to know I am not alone. My Ostomy Nurse told me about the marshmellows yesterday and also introduced me to "crusting" to help with my skin issues.
Thank you for this video. I’m just over 2 months into living with a colostomy, so things are still new for me.
Thank you I am in the hospital and was just given an ostomy.This is great information.
Wish you better very soon, take it very slowly , I am 82 , and 27/years in front of you.🌹🌹🌹🌹
Thank you for these tips. I've just begun encountering colostomies as a nurse and knowing of your experiences is going to be so helpful with educating patients! Appreciate the content!
My experience the doctors and nurse no one tell you anything you have to figure it out on your own it should have somewhere to go where you could dicuuss these differences many people would like to know
I also lay paper in my toilet and it doesn't splash back. I used to have to clean the toilet and floor around the toilet after I empty my bag. I too have a short stoma so I pancake issue with my colostomy. I use the adapt oil and 1 drop of blue dawn in my bag and it helps with my pancakes but you have to also put it in the bag after emptying it, between changing appliance. Coconut oil isn't abrasive as olive oil is. And it also helps kill bacteria and the lubricating oils and olive oil doesn't. This also helps the smell.
Thanks so much for your info! I watched your video while still in the hospital and now 2 weeks with my new friend, it makes more sense. With swelling changing daily, it's been hard to keep up with leaks. A lightweight elastic "girdle" helps support the bag while the new stoma stitches are tender. Also learned that cutting the wafer offset from the center hole, or turning it sideways makes the stiff backing shorter between the stoma and belly button. Less pinch and no more leak! Best discovery is the lubricant & deodorant. I'm super self conscious about being stinky. Had a little necrosis on edge of stoma and EXTRA bad smell! The lube- -deod helps the smell, but makes emptying a quick slide then the bag looks new. It's a weird life change, but cutting pain is so worth it! Thanks for all the help and advice- you are so strong and so inspiring!
I have just had a stoma made because of spinal cord injury. Thanks so much for your really useful tips 😊
My husband had emergency surgery and ended up with a colostomy. The small local hospital didn't have an ostomy nurse and 1 hour before discharge a nurse came in to show us how to change bag and a print out of directions (!) Needless to say the internet became our best friend for information.
Wow. It amazes me that we have such a huge gaping hole in health care with this issue. My hospital had a nurse and she tried to help but there are so much they dont know. I surely hope you are adjusting. I am 9 wks with a stoma and have challenges but try to stay positive. I learned so much more from these sights than from the hospital.
The dietian was lousy, the case Manger was non-existent. This was bas guys!!!
Fourteen months from surgery and still struggling with leaking. 😢
@ediereay7507 Oh my goodness. Why? I'm so sorry! I'm a month and a half into my colostomy and still learning. I hope you are doing ok. ❤
One week post placement of my colostomy here in the UK.
Can’t believe yours is the first US video and only second overall.
Excellent, thanks 👏🏿👏🏿👏🏿🙏🏿🇬🇧
Great video, I have had my colonoscopy for about 20 years, Definitely have experienced all of those type of incidents. This is the first time, I’ve learned some correcting measures to take. Thanks to you, this really helped. Thanks again.😊
Thank you! It took me a year to figure all this stuff out, but all good to know.
almost 32 years with an ostomy and i learned something new 😊 marshmallows!!!! ps the toilet paper in the bowl technique works for keeping the bowl clean too.
Very brave and this is most appreciated
Fantastic tips. I just had a reversal on January 20th. I wish I saw your video sooner. God bless you.
Thank you so much for your video. I learned alot. I had my olostomy surgery march of 2018 and the only time i ever saw an ostomy nurse was the day after surgery. All of this is really hard to figure out on your own. I have subscribed to your channel and this definitely won't be the last one of your videos that I will be watching.
When I wore the adhesive/tape ostomies, I showered in the morning. So, I've been fasting 8+ hours.
Since I'm severely allergic to tapes and adhesives, I wear a Perm-type appliance with semi-permanent vinyl bags. No worries with when to shower because you have no prep work, no measuring and no worrying if your skin is dry enough. Take it off. Wipe it if it needs it, shower, dry off and put it back on.
Or if you prefer to use adhesive, you can shower with it on.
Just dry it off or use a blow dryer.
The face plate won't break down whether your skin is irritated and/or feverish.
You can use lotions, scented wipes and body wash on that part of your skin, too.
The face plate is hard rubber. No tape or adhesives necessary.
But that means I have to wear a belt for security. I also use bits of a Karaya washer. It's like those Eakin Seals, only softer and a dark brown color.
It heals any broken skin under your appliance.
The con: if you don't have insurance, they can be pricey.
But, for people with severe allergies to tapes and adhesives, it's totally worth it.
Now, my dark purple skin that would weep is now almost the color of my normal skin.
Also, I sleep on those pink hospital pads.
It definitely saves me from washing all my bed covers whenever I leak. I just have to wash the hospital pad.
Get a few of them.
Did you have to have surgery for a perm-type appliance? Thank you.
When I had my first surgery and had a Colostomy I only had it for a few months then my life changed when whey took all of my large intestines and most of my small, I was left with only 4ft of small intestines, my still is all watery, I had a nurse in the hospital but when I went home I was left to fend for my self, to make the story short, I use a urine bag for my iliostomy, my poo is watery so I found that urine bag is best for me and soooooo much easier to use and less messy. I hope that helps for those who have water stools. God bless you all 🙏🙏
What is a urine bag?
@@dewarsbramangus A urine bag is usually for those with urostomies. It has a spout which, when opened, releases the liquid.
m@@thewisepowerchair2369
I wasn't aware you can use a urinology bag for an ileostomy. Aren't the stoma's different and in different locations? I lost my entire bowel and half of the small intestine, of which gave me Shortbowel Syndrome which is basically constant diarrhea. I live in a constant state of dehydration and malnutrition which requires 3 days every week in the infusion unit for electrolyte replacements, fluids replacements,, venifer and B-12 injections for the rest of my life in order to hopefully keep me alive!
How is the urine bag better than ileostomy bag? People don't understand how debilitating it is. I can't leave the house unless I fast for fear of bag leak or bursting! It has happened too many times that I am desperate for an answer to get some part of my normal life back! This other bag sounds intriguing and I will definitely look into this. Thank you for giving me some hope! All the best to you!💕
Try to avoid watery stools. Eat foods that thicken and take medication for thickening it as our bodies can't absorb the goodness from our food if it passes too quickly thru our intestines. Just learnt this.
Thank you for your video. I'm dealing with colon cancer and was told I will have a permanent ostomy. My cancer has affected my self esteem and I feel really down about what's going on. Your video was informative and refreshing.
Thank you so much for sharing, Richard. I’m deeply sorry about your diagnosis. Ostomies are intimidating, but I believe a better life awaits you on the other side. Please stay strong! 💪🏻
I get it bub. .I've had mine for 18 years in February. Sometimes it bothers me too. My ex gf has had my back for a few years now. She's gotten me out of some dark scary places. You gotta keep your sense of humor, it helps
Richard, someone told me that folks who name their ostomies take better care of them. My colostomy's name is Rosebud Poopybutt and she is a real cutie! Rosebud has become like her own 'person' and I celebrate her birthday every year (April 1st). She will be 8 years old on April 1, 2022. One of the things you can do that will help you the most is not to be ashamed of your ostomy. No need to take special pains to cover up or disguise your ostomy under your clothes. Wear what you want, when you want. I had Rosebud put up on my midriff because I usse her as a teaching tool when talking with people and encouraging them to get that colonoscopy, lest they end up with their own colostomy. Rosebud came about because I had Stage 3-C Rectal Cancer that was growing out my butt. (I thought it was just hemorrhoids - but what did I know?) The longer I have my stoma, the more I love it because it lets me live my best life. No more racing for a bathroom. No more messes. No more anxiety. Life is way better with Rosebud and I wouldn't trade her for anything!!!! I sure do hope you're doing well and feeling much better about life in general. Over time, things definitely will get much, much more comfortable. You and I have both beaten cancer!!!! Your colostomy has given you years more of living!!!!! Enjoy them!!!!!
Hi Richard, I've had an ileostomy for 14 years and I feel like yourself, my problem is I'm too conscious of needing to use the toilet when I visit anyone or have to go out socially so I've kind off stopped. It's not that I'm glad you have self esteem problems it's just that videos I've watched seem to be from people who don't seem to mind and are confident. I so envy them and wish I could be like that as well. Maybe we'll improve I really really hope so. I wish you all the very very best.
I got the same diagnosis about a year ago too but I thought I was gonna keep the use of my rectum. Well that changed and Ive adapted well to my stoma after 2 months. Richard, how are you doing brotha. Let us know.
I have found in the 2+ years with my ostomy, if I drink up to 1/2 gallon of fluids a day, my output is liquids. If I fail to drink this amount, I am constipated. Mine is a cross between an ostomy and an ileostomy.
Thank you so much for this helpful information. Many blessings
Great video and thank u for showing actual pouvh emptying it's appreciated as I may be getting this surge.. thank u 🙋
Thank you so much and I will share this with my patients ❤❤❤
Thank you for your tips. I'm just one week into having had operation for bowel cancer and now have an ileostomy.
Thanks for the great information on the splash of sadness.
Hi Cecily thank you for your help. I have just become an Ostomate after having my J-Pouch removed and also my rectum & anus. One tip I use is that after emptying my pouch I add a 1/2 cup of water and close the bag to be able to swish the water around the inside and clean out the bag, then release it and close the pouch.
Hi there, Iggy! Thanks so much for your comment--I think many ostomates will benefit from this tip. In my experience, washing out the bag helps to prevent pancaking and keeps the odor to a minimum. Do you just keep some water handy or do you have another method? I used to have a hose bidet on the side of my toilet at my old apartment and it was soooo useful for emptying/rinsing out the bag. Great advice 👏
I do this as well.
I just ordered a travel bidet to use for cleaning my pouch.
Thank you for sharing! Side note: I love your makeup!
Hey there, have had an ostomy (ili) for 20 years and I have learned more from your videos than anyone else... especially "pancaking" thank you for being so brave! Did not have an ostomy nurse or anything but experience! I am a 71 y/o Veteran and my birthday is tomorrow.. So thanks for the B/day present!
Aw, happy belated birthday 🎂 I've just had my Stoma 3 weeks. I had Sepsis and woke up in Intensive Care with it. I had to have extensive surgery down below, 3 times. I have a Wound Vacuum which I'll leave Hospital with and a Catheter. I'm blessed to be here. I was very ill. I've had a lot of issues due to the Stoma bag not sticking. My skin is broken and bleeding, it's causing the issue. Hopefully it will settle down. Best wishes from Northern Ireland 🇬🇧 🙂
Happy Birthday!
Thank you for being so explaining.. its good to know that I'm not the only one... trying to come to terms with this change of Life...
God bless you, xx
You’re so welcome, Simone! You’re definitely not alone…please don’t forget that. Ostomies are difficult to manage and care for. It takes a lot of time and patience to cope, but it does get better. Just take a few breaths every now and then and remind yourself that it really will be okay 💜
I am due to have a Colostomy soon. I am scared but know that I will have a better quality of life albeit problems from a bag of my own waste at my side and intestines through my abdomen. I do not think there is such a thing as 'problem free'.
@@CecilyLivingBeyondtheBag Cecily, I have my ostomy just over 25 and half years. For splashback, if I kneel and empty it then, no splashback .
Did have to stand up to empty it a few days this last 2 weeks, due to having a total hip replacement, while waiting for a raised toilet seat and it took me a wee while too get used to emptying it siting down. I now aim for the side of the toilet bowl, no splashback. Happy days 😅
Changing the bag. I find if I change it in the morning immediately after I eat, 5 mins I have the bag changed. It doesn't get time to act.
My ostomy nurse is no great help to me, so I just figure out things for myself. I had more surgery last year and the surgeon and his team didn't tell me everything last year as I was told by a nurse.
just a day before I had the total hip replacement, that I had a pulmonary embolism in my lung, last year, imagine the shock I got. We do need a sense of humour.
Sorry for the long comment.
I hope this finds you doing well.
I'm only 54 years old and when I got the ostomy I was 28, I had polyposis in my colon and the surgeon in my local hospital thought it might have been cancerous, so by the time I had the surgery, I found out it wasn't cancerous.
You are such an inspiration!
Thank you so much! This comment just made my day. Unfortunately, there is no magic guide for learning how to cope with devastating medical issues. My best advice to new ostomates is that whatever you're going through, don't lose hope. Sorrow, frustration, anger, disappointment--they're all part of the process. My mom always reminds me that it's okay to be sad but it's not okay to give up. That's something I'm still trying to master every day. Wishing you all the best. 💖
Thanks for all your videos. I really do appreciate them. I know they’re from years back and you may not see this, but I just thought I’d let you know that it seems like every single video you go from clear to blurry to clear to blurry and it’s for a longer period of time that you’re blurry so it’s really hard on the eyes a little bit. I’m not sure if you have problems with your camera and you’re not seeing it when you edited or something like that, but it may be something you want to fix if you’re still going to continue to make videos. Other than that I love your channel and all the information and how authentic you are thank you so much for this.
@lynetteveches4745 years back? You got to be joking! 2 years ago isn't that long ago mate!
As problems with the video, this is her first video that I seen and don't see a problem with this video. This video is perfect.
Hey Cecily thanks for ur everyday tips. I will definitely try the marshmallow trick! Unfortunately here in Germany I haven't had the feeling that the nurses have a lot of time and I didn't experience a lot of reassurance because I also had the pancake problem at the weekend.
I purchased a handheld fan from Amazon and this helps dry skin quicker after shower. And I always shower early before eating. Normally I choose pasta or potatoes when eating out. For me, it prevents early needs for bathroom.
Thank you for all of this, especially the handheld fan idea. My boyfriend bought me one for my chemo sessions because I would get the sweats during. Now I can use it for that!
I'm only 6 weeks in with my permanent colostomy.
Appreciate the tips!
I just ordered a travel bidet to use for cleaning pouch in between changes. Also, I save old washcloths n keep in designated storage to use for coverage after showers. Stoma since 2021 and still learning what works. Love the info on this site. Blessings n Merry Christmas everyone.
Awesome. So good to see that and appreciate you sharing so openly. I have been 103 days ripping that thing off every day and putting it back on but my stoma has prolapsed and I struggle to fit it by myself. I have a Colyostomy and I loop Ileostomy and I’m struggling… a great deal. Just to empty and to live life and interact with my partner. because I worry. Im just a little lost right now because they changed me. Im ugly now and I can’t fix it. There’s no gym. There’s no drugs there’s nothing. But there’s beautiful support from my friends and family but that doesn’t mean shit right now…
This was very helpful, thank you x
You are so welcome, Katrina! ❤
I really liked this video! You are great!
In my 42 years of having an Ileostomy, I've always emptied my bag from a standing position as well as cushioning splash with toilet paper. To solve my pancake problem I make sure I hydrate a lot, it seems to loosen my output. If I do pancake I just push the stool from the stoma downward from the outside of the bag like you do with toothpaste. Also I monitor my food intake times relative to my output times, that way I can predict my slow output times.
Thank you. This was a great video. I’m coming into my 4th week post op with an ileostomy (temporary). I’m wondering about going back to work and emptying my appliance. Your toilet paper tip looks golden!
Very informative. Thank you so much
Thanks for the tips, I recently took a long flight and had to use the toilet. I used the technique of “lining” the toilet with a couple of pieces of toilet paper. Flushing worked much more easily with a single flush, I even traveled with marshmallows 😊 so you can control output while you’re travelling.
Great tips! Thank you 😊
You are so welcome! I really hope they help. Like I mentioned, I love my ostomy nurse but she doesn't always have the best answers to my burning ostomy questions. If you have any other questions, feel free to let me know. 💕
A great splash back hack I discovered is to squirt some thick shave foam into the toilet first. This works incredibly well.
Very useful video..well done and thanks.
Thank you! So helpful for me:)
A lot of this info is now included in the ostomy certification so newer ostomy nurses are aware of it by now, and hopefully ostomy nurses are doing the job of keeping updated. Thanks for the video
Who gets a new ostomy nurse? All the ones I got were oldies that thought they were experts and wound up in wound care because they were total duds.
I have a permanent ostomy, I had Stage 3 Colon cancer., Had Chemio, radiation and operation. Since 2012 I have a ostomy bag, 2 piece works best for me. I use expensive lubricant odor products. But what is cheaper and works well as a lubricant is Mineral Oil . Good luck.
Rick Mclean
You Speak so clearly.
Aww! Thank you so much...I'm flattered. 😊
I've used mineral oil for years to help with the stool being able to make it down the bag. Thank you for your video.
Great Video Cecily, just found it now, I think I might make a video of those 3 things! I do tell my patients the same things except for the Olive Oil - I've heard of people using Pam Cooking Spray!
Splashback is caused by hydraulic rebound much like a trampoline. I found that if you get into position hold your bag valve with one hand and flush your toilet it will vector hydraulic pressure away. You really want to let the water to start receding before you release the valve but you will see zero splashback. The only downside is you will be flushing your toilet twice since you have some cleanup work on your ostomy bag after the dump. An extra flush is worth the next to zero splashback in my mind. Good luck all
Great tips. Thanks.
Thank you for the extremely helpful information and tips! Do you have any recommendations of how to help cover the costs of ostomy bags/materials??
You did a great job!
THANK YOU! I have an ileostomy due to a Crohn's bowel resection and fistula repair. There was a 50-50 chance that I would not have one but lo and behold when I woke up from surgery, there it was. I had literally been praying for weeks that this terrible nightmare would not happen. I am thankful that my surgeon says it is temporary but in the meantime it has been very stressful for me. The day before I was discharged from the hospital, I had to go through seven bag changes in one night because it kept leaking and it has all sorts of peristomal skin damage. I'm finally slowly starting to get the hang of things but these tips are so helpful to me. I now keep marshmallows in my nightstand so that if I start having a leak in the night, I can start eating them before I have to go to make an apparatus change. Fortunately I'm happily divorced so I don't have to worry about someone questioning the presence of marshmallows in my night table. And my dogs don't really mind as long as I share the marshmallows with them once in awhile.. in all seriousness though, thank you for your candor and this great advice. This has been very emotionally traumatizing for me and these tips are helpful
I have had an ileostomy stoma for 27 years. I am now 82. In 2918 at the age of 75 I remarried , your stoma should not define who you are …..it’s a mark of courage as someone pointed out to me. Good wishes to you. Xx
My Ostomy bag was installed late February 2023. Thanks for the frank discussion. I am 70 and retired so I have less problems than younger people. I use vented bags and have a clothing staining problem. Not sure of a good resolve for that yet. Olive oil sounds like something I need to incorporate for pancaking. Cooking spray may be easier and faster
As it turns out, I use Vaseline to prevent pancaking. I use a 1 3/4×4 inch Band-Aid with no adhesive on two sides over the vent
When I run out of the deodorant lubrication I use baby oil. So far its worked to stop pancakes in my ileostomy.
Thank you so much! I have a temporary bag, and I'm just getting into training. The smell is my greatest fear
I suppose after 30 years of living with a stoma it becomes a way of life. Hang in there you are not alone . . .
Hello. wow where would I be without you! Do you have any suggestions for waterproof around bag. Thanks for everything!
When ever possible, I change my wife's ostomy mount in the morning before she consumes anything. 95% of the time her stoma is "quiet" during the whole process.
Love the marshmallow suggestion!!
I've found the same with my wife.
My temporary ostomy bag traumatized me so badly I developed an eating disorder that I thought I had conquered in my 20s and 30s. I never could get the pouches to adhere to my skin. I had an open wound next to my stoma that developed the 3 to 6 mo. I had it. I've blocked a lot of that out of my mind I was so traumatized...seriously, ,the happiest day of my life is when I had it reversed...
Great info.
Thanks for this! I’m currently post-op ileostomy on my 4th day and absorbing all the information I can find
Oh my gosh, I’m so glad you’ve made it four days in but I know this time is the hardest. Please rest as much as you can, and let me know if you have any questions! Here to help 💜
@@CecilyLivingBeyondtheBag Thank youu I really appreciate it! I do have one pretty random question if you don’t mind me asking but are stomas always quite noisy because honestly mine seems to like to let its presence be known quite frequently and audibly, and I’m starting to wonder how people get around this because it’s pretty embarassing and just unpleasant.
Of course, and that’s a great question! I’m happy you asked. Stomas definitely make some noise…mine did just a few seconds ago 😂 But they’re noisier in my experience when you’re fresh out of surgery. One of the reasons is that you’re likely outputting a lot of gas right now, so you’re going to have more noisy output for a little while. That problem should improve with time, and you might have to play around with your diet a bit to find which foods you can tolerate without producing a lot of gas. It also helps to eat at regular intervals throughout the day to prevent excessive gas, but you will get occasional output sounds (even if your stool is mostly solid) because gas is an inevitability. My best recommendation for preventing gas besides avoiding alcohol and certain foods is an over-the-counter medication called “Phazyme.” Make sure it’s okay with your GI before you start taking it but it’s very benign and really helps. Everyone has varying levels of noisiness, so I expect that you’ll start to see your baseline in a few months after you’ve had more time to recover. I hope this helps and best of luck. I know it’s a big adjustment but I promise it’ll be second nature in no time 💕
@@CecilyLivingBeyondtheBag Again, many thanks you’ve been an amazing help and I’ll definitely look into Phazyme for the recovery process so I’ll feel a little more confident sleeping because I know TMI but yesterday morning too much gas caused my bag to burst while I slept so I’ve definitely learned about some of the dangers of gas the hard way lol. Seriously I can’t stress enough how much this advice will help me, thankyouuuuu!!
Iv had a ileostomy and now I have colostomy and it's a learning curve for both I found that changing before I eat or drink anything in the was best for my ileostomy but now I change at night before bed so my filter isn't blocked with stool and it's not filling with gas through the night
great tips; helpful to me even tho' I've had an ileostomy for over 60 years
Hi Carol! So glad you found the video helpful. Wow, 60 years with an ostomy! That’s quite an achievement. Experienced ostomates like you give me hope that the future is bright. ☀️
Hey cool last name
60 years? Can they not reverse Yours?
Fuck god
I have to kneel in front of the toilet to empty mine. In men's restrooms it's absolutely disgusting. I'm 4 months in and hoping for a reconnection celebration in the coming months. It's been incredibly difficult adjusting to life like this. I applaud anyone that's living life with an ostomy. I've felt work early the last two days due to a breach. It's a very humbling experience.
My tips leaned through experience and what my nurse never told me:
Tip 1. For guys with hair on their stomach;
Put the cardboard roll of finished toilet paper over your stoma and shave around it, so avoiding hurting your stoma.
Tip 2. If your output is thick, sticky and doesn't flush well;
Before you empty your bag flush the toilet first, so putting a wet area in the bowl to help the output slide down into the water.
Tip 3. To avoid leaks away from home;
Empty your bag and don't eat anything before you go out.
Tip 4. To avoid having a full bag at night and unexpected night leakage;
Finish eating by 5 pm or earlier and empty bag before going to bed.
Tip 5.
To help with leakage;
Try to buy very high wasted under pants or knickers to go over your bag. If you are afraid of potential leaks, put layers of kitchen tissue over and around the bag inside the pants.
Thank you so much for these tips and tricks, Michael. I actually learned a few new things reading this, and I'm am sure that others will greatly appreciate your advice as well. I especially like the flushing tip-it worked really well when I tried it yesterday. You're the best!
I Wear High-waisted Underwear And High Waisted Pants.
Finally someone who is living it. I have a urostomy and it’s true, stoma nurses are lovely but until you live with it you really don’t know.
Have had a big pancaking problem constantly.One day after eating well nothing was coming out into the bag.Oh oh I thought it must be pancaking.I didn't have the Brava product so I tried a little olive oil.I wasn't expecting much results if any.I was shocked how stool was immediately going into the bag where it belongs.Thank you!
Pancaking: I've been told to put a drop of vegetable oil in the bag opposite of the stoma. Not putting pressure on the region where the stoma is , I guess also helps. Give the "things" a chance to drop into the bag.
Great tip! Thank you so much for adding this, it is really important to get the oil/lubricating agent on the side opposite to the stoma. I love ostomy hacks that only require a quick trip to the grocery store rather than having to order a bunch of expensive medical supplies.
I guess you could also use some products from the field of "Marital Hygiene" like our grandparents would have called it.
@Paul Mcinnis adding the oil was recommended on an unused bag before using it for preventing sticking.
Reuse was never mentioned.
@Paul McinnisNot really practical in a public restroom. Also I tried this and had some accidents if the output was too liquid. I discovered that if I stack three large kleenex and hold and fold under the bag I can really slow the output before it hits the water, and it contains most of it. Sometimes I missed the tissue I would place and then there are the new toilets that flush the paper before you can use it.
I have too many issues with leaking from the barrier. I use Glad Press ‘n Seal over the bag to help and it has helped avoid some embarrassing situations.
Could you explain a little more about this technique? I'm having big problems with leakage and really need help. Thanks.
@@debtreat7382 I just use a large sheet of Glad Press ‘n Seal and stick it over the entire bag and press it on my stomach. It won’t stop leaking but it buys me a few minutes and might save me from disaster. My stoma is very small and does not rise very high from the skin that is why there is a problem. Dr said my colon was too damaged from radiation to create a larger stoma.
@@julieestep1964 thank you for the explanation. I will give this a try.
Thank you so much 👍 I have ovarian cancer and am having surgery soon and they will be removing part of my colon and I was told I will be getting a stoma and need ostomy bag. I was lost on all this so this really helps in advance ❤
Also flushing at the time you release the contents of the bag helps with splashing
Thank you very much!!!!!
I normally change once every 7 days. I try to eat an early dinner 5:30-6:30PM and only drink water. I pop loperdime (imodium or store brand) and give it 45 minutes. If it's still going I'll use a little ice around the stoma to get it to tighten. Your body isn't used to cold on its inside like that so it retracts, but not into the body. My main issue is showering. Checking into a a Stealth Belt.
Hubby just got his ostomy Wed this week ..I got the smug look why haven't we read the 400 page booklet?..maybe because I haven't slept more than 6 hours in one week..hubby has parkinsons with probable Lewy body dementia ..so I will be caring for it...he has a stick through his stoma...I think that comes out in about 2 weeks .The prices on Amazon are well pricey..I am so so grateful for all the info...Marshmallow tech sounds so 😉 sweet 🤣🤣omy gosh u have a fabulous variety..where did u find them?
First I want to thank for suggestion of baby oil plus for pancaking, will try. I use a two piece snap on appliance and after cleaning off most of the pancake with a moistened wad of TPI step into the shower and telephone spray clean what little is left. Then I snap on either a rinsed and dried, or new bag with lube deodorant inside. If you are having a thick output that tends to really splash and especially if you are a male and facing the toilet take two or three large box kleenex and fold under the output of the stoma to actually catch (or slow the decent of the semi solid output). Please do not use paper towels as it can damage the sewers and your plumbing (It would be nice if some company could manufacture a thick flushable bag just or us ostomates to catch so you can slow the drop into the toilet minimizing splashback). One more tip is I also favor the velcro closure of my two piece snap appliance, but for insurance I use about a small paper binder clip with two foldable wire handles found in stationary stores.
Those are all such great suggestions-thanks so much, Ron! I love your pancake prevention method especially. They really should make those flushable paper towels for spashback. That’s a great idea 💡
As a long time stoma guy I have found that certain times of the day I have little to no output. For me this is 4 or 5 in the afternoon before dinner. This has nothing to do with when I last ate. Also to make sure my skin is perfectly clean I find that taking a shower helps without a pouch ensures that my skin is clean and dry. Nothing works everytime but this works forf me maybe 95%.
You're fantastic
Super blog thank you
My husband’s colostomy is on his right side & up high at his ribs. He’s inverted & wide. 2 questions. I’m cutting the wafer as wide as possible. What do I do if I need to cut it wider? It’s very red around it now. Next question, what type belt do you suggest for him since it’s so high ? This is a 2nd colostomy for him. He had his 1st one on the left reversed but had lots of problems, surgeries & now finally got another colostomy & the surgeon was able to get it on his left upper side.
Enjoyed your video & he needs to try the marshmallows! I just had this problem today trying to get his changed ! It took forever!!!! Thank you!!
HI there Judy! Thanks so much for your kind words and leaving these questions--they're great and I'll do my best to help. I know it's so hard to adjust to a new stoma site. To answer your questions:
(1) I think I mentioned these in another video, but I used the Coloplast SenSura Mio Post-Op bags when I had my prolapse (which required me to cut a much larger hole for my wafers). They are really great for larger stomas, but the downside is that they are intended for post-op's, so their spout is narrow and suited for liquidy stool. If your husband has very thick stool, it will take some effort to empty. This might not be a permanent situation, as ostomies tend to shrink down a lot as one heals from surgery over time.
Here's the link to the Coloplast SenSura Mio Post-Op bag: products.coloplast.us/coloplast/ostomy-care/sensura-mio-hospital-assortment/sensura-mio-post-op/.
Please take a look and let me know if these bags seem like a plausible solution. I'll keep thinking on it if not. The biggest thing is that you try to get that peristomal skin covered up by a wafer to avoid more irritation. If that means some difficulty with emptying, at least for now, it's worth it.
(2) In all honesty, I rarely use belts these days (although I probably should start because I have a hernia at the moment 😳). I have heard a lot of ostomates complain about belt options being too low for them. Custom belts are probably the best way forward for your husband. Something right off the shelf probably won't do, and I don't want you to waste time and money ordering something designed for a stoma that's below the waist.
Do you have an ostomy nurse? Typically they can perform measurements and actually order the belt for your from a supplier like Coloplast or Hollister! Give that a try if you can. That way, insurance will probably help cover the cost.
If you want to try something relatively inexpensive that will help support the stomal area until your husband can get a more permanent, custom belt, check out this option on Amazon.
Here's the link to the belt on Amazon: a.co/d/0KG4cE0.
It's lightweight and adjustable, so I imagine that it could be wrapped around the upper abdomen more effectively than other belt varieties. Please let me know if you think it would work!
I'm thinking of you and your husband. I'll be monitoring this thread over the next few days, so please let me know if you have further questions or thoughts. All my love to you both 💖
I’ve had a stoma since I was 6 and I’m 21 coming 22 what I do when emptying the back instead of sitting down and putting the toilet paper in the toilet I find that just kneeling down and empty it hardly ever get splash back
That's a great suggestion. Thank you so much for sharing. The GutSquad is fortunate to have the benefit of your many years of experience. Wishing you 15 more years with a healthy stoma!
Nobody told me to use a drainable bag when I needed a colonoscopy prep. Learned the hard way.
RE. Splashback. Figured that one out. Paper towels always in bathroom to clean drop one immediately before...
Good information. Another good reason to have non-emptying bag…. Age. I was 55 when I got my colostomy through cancer. I don’t have the dexterity, and flexibility of a 55 year old…. I am not 66 and I think it is the easiest to just toss- replace- and go. It may not be the best way bit it works for me .
You are excellent
Do you have any suggestions for the pancaking that doesn't involve the lubricating deodorant? That product just doesn't seem to work for me for some reason, so I am constantly squishing down my bag and having to pull the top edge back up cause it will stick to itself. I almost always have really thick stool. The only time I get liquid stool is if I don't eat, but drink a bunch.