Pinch the outside of your ostomy bag right in front of stoma . Pull it out and away from stoma , then give it a few shakes up and down and side to side ! This will dislodge the output from the bag and allow it to fall down to the bottom ! Occasionally , if I have drained a rather thick output , I will put maybe a half ounce of water back into the bag before I seal it up ! Especially before bed time ! Drain and rinse out has more than tripled the life of my ostomy bags ! I am glad to learn that I am not alone in this practice !
Hi Karah. I've watched a number of your videos as well as those of other ostomates because I am totally responsible for taking care of my wife's Ileostomy equipment and I'm always looking to learn from others. She is bedridden and cannot stand or walk yet because of what septic shock and a fungal yeast infection in her blood post surgery has done to her. I've been her 24/7 caretaker for 18 months. Thanks for sharing your experiences in these videos. I don't know how y'all make these videos and share them via RUclips or I'd probably make a few of my own in the hope of helping others. Claudia Ann's Stoma, that she named "Stella Stoma" is very unlike any other I've seen after watching more than 50 RUclips videos. In addition to being shaped more like a football and egg mix instead of round like all the stomas I've seen, it's also almost flush with her body instead of protruding from a half inch to an inch or more from her body. This combination has created many unique challenges I've worked hard to overcome and remedy for her. She doesn't have an Ostomy doctor that I could ask for help. So, in addition to RUclips videos like your's, I've spent hours on the phone speaking with several Ostomy equipment manufacturers and even sending the photos of Claudia Ann's Stoma. I'm currently using Convatec Ostomy equipment on Stella: convex moldable wafers, Akin slim seals, drainage clear pouches, crusting powder, adhesive remover, protective skin barrier spray, and pouch lubricant and deodorant. I always rinse her pouch with fresh water every time I empty it. Also whenever she suffers from Peristomal skin irritation I use a Convatec wound healing sheet applied directly to her skin before applying the Akin slim seal and then the new moldable wafer and pouch. I'd send you a picture of her Stoma if I knew how. Thanks for your time if you've read all of this. Claudia Ann's husband, FM Chandler
Hi FM! First of all I am so sorry that I’m just seeing your comment now! For some reason, RUclips held a couple of my channel’s comments in the “review” folder, and that can usually just be one word that triggers the review for safety readings according to Ai 🤷🏻♀️. Thanks so much for sharing a piece of your story and your wife’s journey with us!! if you have time, I would consider sharing with folks who are also 24 seven caregivers, and need to connect. Making videos isn’t very hard. All of mine have been done on either an iPhone 6 or an iPhone 11. I use an editor app too. It’s just a matter of getting going, because as @ThinkMedia says, “just hit record”. They are an excellent resource (a LOT of free advice) so definitely check them out. I had to accept that my earliest videos were going to be probably some of my most interesting to figure out what I was doing!! I’ve only been at this a couple of years now, but I’ve learned a lot. The funny thing is those earliest videos are the ones that seem to be watched and commented on the most so I’m glad I started! The bottom line is I share so others will know that they’re not alone, and hopefully my experience on this journey can provide encouragement and help to someone else. You have just shared some incredible experience and first-hand knowledge. If you are feeling compelled to share that with the world and obviously if your wife is fine with that you could definitely help others this way! I’ve only seen videos of ostomy patients confined to a bed minimally or it’s stoma nurses practicing on a mannequin. After months of PT for my initial mobility issues, I was able to walk again without assistance, so I do understand minimally what that looks like, having a new ostomy and trying to navigate mobility wise. As for your wife’s stoma journey with Stella, I definitely would’ve recommended a convex for a flush Stoma and contacting the manufacturer’s nurses etc…Maybe somebody else here in the community has something else to share. It seems like you have been doing everything I would do if my husband were they still my patient and not me!! What a blessing you are to Claudia Ann, I’m sure!! It’s sad that many places all over the world do not have enough ostomy nurse is to go around. My general surgeon’s office who did my ostomy does not but the hospital does, they have a UOAA group, and my colorectal surgeon does have the nurses. I’m not sure where you’re located but if you’re in the USA, where we have a lot of teaching hospitals, they may possibly also have at least one or two wound care nurses or “WOCN”’s. I don’t live close to my colorectal surgeons office, but they allow me to do FaceTime and send pictures via email if I have a question. I hope some of this helps but it really does seem like you are already on top of it so well!! Thanks for being a part of this community! Even just sharing what you did I’m sure is helping somebody else who finds this channel but if you do start one, definitely let me know so I can refer to you too!! Blessings to you and your sweet wife 💜!!
Thank you so much! Ostomy wearers are so helpful! I found out that the appliances I was wearing was causing a breakdown of my skin by another ostomate saying she was allergic to the adhesive. Well so am I! It would have been disastrous had I continued to wear that product another month!
Awesome! Let us know how it goes! I guess I could put a disclaimer that this is not a sponsored video or channel lol (because Coloplast probably doesn’t even know that I exist but that’s OK as long as people are getting benefit from it!) 😎
I've had a colostomy bag for two years. When I was having chemo one of the nurses had an ostomy. She suggested I use a few (1-5) drops of liquid coconut oil. I do alternate it with the Brava liquid deodorant lubricant if my output is stinky. I get a full 7 days of wear out of my bag 95% of the time and haven't had the oil degrade the seal, but I put move it around so it is below my stoma in the lower part of the pouch. Thanks for the video it was very informative!
That’s good to know, Melanie! Thanks for sharing that option! How are you doing now? I’m curious too; Did you find treatment change your output any? Odor or otherwise?
@@TheKarahLife During chemo I experienced pancaking constantly. My bag came off at least twice a week and I would have a leak-I was frightened to go out. The skin around my stoma was cracked and weeping. I was a mess. Plus I was on Prednisone,-before I was on it I wasn't hungry ( between radiation and after my surgery I lost 70lbs) Then during chemo I was hungry because of the meds. So hence the pancaking-you can only eat so many croissants in a day🤣. Anyway things are much better now. The only foods I have a problem with as far as odour are broccoli and fast food-burgers. I tend to stay away from both.
@@melaniepoulton6738 Goodness!! I’m so glad to hear you’re doing better now! Quite the ordeal you’ve been through!! Oh yes - nothing like broccoli…😝 Even before my ostomy - but I generally don’t touch it now either.
Good morning Miss Karah, just wanted to say thank you for the information...pancaking is a nightmare for me, so any suggestions are a great help. I was recently (2 days ago lol) looking for a medical supply store in my area (very rural) and stopped at the closest pharmacy to ask where one is. I told the counter person I was looking lubricant and why, she said, "could you use baby oil or olive oil?" A pharmacist in the background all but leapt over her desk and said, "no no no no, don't use those, your seal will fail faster. Plus the perfume in baby oil can cause a bad reaction for some people on the stoma. Use a water-soluble, fragrance-free oil if you need to...but medical grade is best." She went on to explain that non-water-soluble oils degrade the sticky/seal, which is why they work so well to get my flange off, plus are difficult to wash off the actual stoma. She said her husband is an ostomate, so she has learned through trial and error and lots of questions to his doctors. She did say that I could use them, but to be aware they would likely decrease my wear time. Hope this helps someone, I'm not sure which oils are water-soluble but am just sharing what was told to me. Also a question, how much water/liquid do you intake daily? I know I drink between 62 - 112 oz. and my output thickness is still regularly an issue. Many blessings.
That is great information Charmin!! Thank you so much for sharing that!! I know when I see people talking about baby oil - especially on RUclips - I think that they must have tried it themselves and that’s fine - like I always say - whatever works for you. I wanted to try my Avon Skin So Soft because I love the way it smells, and feels on the outside of my skin but I am nervous about what it would do on the inside so I don’t. Excellent data to pass on!! 💜
FYI - Opinion varies from individual to individual. In my case, my ostomy nurse says that there is absolutely no issue with using baby oil. I might mention that you can also get scented baby oil that helps to deoderize. The Brava lub/deo is great, but my insurance doesn't cover it or it would be my go to. Also, everyone is different and their body doesn't respond the same as the next person's. I would like to mention though, that I have seen folks talk about adding drops of essential oils directly to the pouch, and that is an area that you need to be careful as they are supposed to be used with a carrier.
Absolutely Margie! We may all share the same general “make up” as humans and have ostomies, but what works for one, may not for another. Thanks for sharing that info!!
I immediately ran the stairs down to my mother, opened her pouch to let air in it and closed the filter with the sticker. I hope it works. I'm taking care for my parents 24/7. My mom has a colostoma since April. All went fine untill the last days. I didn't know why this pancaking is happening. By now. If the sticker on the filter works I will be the happiest daughter ever 😅. Fingers crossed. Thanks for your video
I’m so sorry I’m just seeing your comment! For some reason YT put it in pending 🤦🏻♀️. I have to know - did the sticker work? I hope so! I know my “air” increases for many reasons - from types of food & beverages I ingest to how fast I eat. My pancaking can be related to the food and even not having taken in enough fluid. It can be a real challenge when trying to balance nutrition and this challenge. God bless you!! Taking care of both parents is nothing short of selflessness! 🥰
@@TheKarahLifeyes, it worked great. No pancaking anymore. I'm so happy. It's so easy to change the pouch every day. All is clean. No damaged skin. No leaking. I sent an email to the nursing service and told them what they can do to prevent this problem. Unfortunately I've never got an answer. It's so sad that nobody cares. Well. I found the solution here. Thanks for your help ❤😊
Oh my gosh I'm so glad to hear this for your mom - and you!! I'm so glad you reached out to the nursing service but it is too bad you didn't get a response though =( Hopefully it's just an oversight and maybe they will use the info - we can hope =) Sharing here by all of us is helping each other and those who have yet to find us but if they search, they'll find a bunch of us sharing what works for us =)
Oh bless your heart Virginia! You do have a lot on your plate! Definitely hydration is crucial when you’re talking kidney challenges! I lived with a blocked kidney for years and now it’s distended but thankfully it is not damaged to the point where it needs any assistance. They do have me check it every few years to make sure. I am super vigilant about hydration because of my history of dehydrating and malnutrition apart from the kidney issue - primarily because of inflammatory bowel disease. 🤗💜
Hi karah. 👋 I just love watching your videos. Lots of information I need to know. I will be getting my colostomy on March 17. So you are so helpful 🙂 will keep watching you. Thank you 😊 💓
Awwwe that's so sweet of you to say!! Thank you!! I'm so glad it's helpful to you!! In case you didn't know, there's a great group of ostomy ladies on Facebook if you're interested. I've mentioned it a few short times, but I don't "blanket share" it to the world (here on RUclips) because I don't want to see it spammed by people who it's not for, but if you want to connect with other ladies (ileostomy and colostomy), check out "Ladies Ileostomy Group" on Facebook. You'll answer a few questions to join, since it's a private group but there's some amazing women there. Some who've not yet had their surgeries & some with 40 years of stoma life! Incredible experiences shared and from all walks of life & reasons for needing a stoma. Just an FYI if you're interested =) **HUGS** 💜
@@TheKarahLife thank you Karah. 😊 I'm going to need prayers and strength. Just want to hear the words Cancer Free. I'll deal with it, what it takes!I will keep you posted. Much love 💘
Mine pancakes almost always, then when I have a more loose stool it will leak every time. Thanks for the suggestions. I have a few things I can do to help
It can be such a pain!! Trying to get the right balance - without sticking - almost seems to be a dream 🤷🏻♀️😢 You’re very welcome, Alicia! I’m all for whatever works well and safely.
Hello Please tell me how I can keep my attached stoma equipment dry and or what to wear over it when I go swimming. Not very clear on whats out there ? Thank you 🙂
Hi Susan! Thanks for your question. Did you have a chance to look at my showering video? ruclips.net/video/gVSJUJYW0AY/видео.html Or the “I swam with a stoma” video? ruclips.net/video/fvCz4JasPKg/видео.html In the showering video, there’s ideas for covering but nothing I have found has ever kept my pouch completely dry - even those little plastic covers I show. Not 100% dry anyway… In the swimming video, I didn’t use anything to cover my pouch. I know some people don’t like the feeling of a wet pouch and I totally get that but all I did was wear my bathing suit in the water and then went to my van to dry off. So I do believe There are some companies out there that claim to keep you dry, but honestly, I have not spent any money on those because I really don’t mind just drying the pouch off. They are made to get wet so that we can shower and as long as I dry the bag/pouch and the tape holding the wafer on, I’m still good for several days after I get it wet. I actually do own a swimming bottom from this company, but I ended up putting on weight after my surgery and it currently does not fit. But again - I don’t mind my appliance getting wet. You might look into them and see if there’s anything there you want to try but I can’t recommend first hand because I just haven’t use mine. www.ostomysecrets.com/collections/womens Be sure to check around for coupons too because they often promote a small percentage off their products. Honestly, a little too pricey for me but I can tell you the quality is good. I’ve also heard of some people using the Brava strips for swimming and I’m trying a new one out that ConvaTec makes that is a little extra adhesive strip just in case the wafer tape begins to peel. I’m actually trying a few different new products and will be doing videos on those soon. ruclips.net/video/TBcX_5YzjNU/видео.html If you have a medical supplier / distributor, you might also ask them to recommend as well. Have you checked out Laura’s videos? I’m not sure if she is still involved in this company, but she did some great videos on basic ostomy life. @shieldhealthcare ruclips.net/video/AhJ1Q4X6v1w/видео.html I hope that helps or at least to point you in the direction of finding some products you might try! Blessings! Karah
Hi Susan! I get my supplies through an online medical supply company. Right now, that’s either Edgepark or Byram. I’m not sure where you are located but they may only be for the United States. If you don’t have access to an online or in-person medical supply, you can check with Friends of Ostomates Worldwide as they collect donations for supplies and then send them out to people who need them. - Edgepark: my.edgepark.com/ostomy/deodorants-and-cleansers/c/L2-19 - Byram: www.byramhealthcare.com/ - F.O.W.: www.fowusa.org/ Otherwise, you may be able to find on Amazon, Walmart (partners with medical supply houses), or even contacting the ConvaTec folks directly: www.convatec.com/ostomy/right-after-surgery/ Do you have access to a stoma nurse? That can be another option. And then, the UOAA (United Ostomy Assoc of America, www.ostomy.org) has group meetings for support and often times people will donate unused supplies. Hope that helps!!
I enjoy your videos. I’ve had my ileostomy since January 7th. I’m thankful and enjoy your videos. When adding a lubricant is it okay to get on the stoma?
Awwe Thanks Jennifer!! I’m so glad this channel is helpful!! I certainly do since it’s designed to be applied inside the pouch (when using the items specifically designed to, like the Brava I mention). I can attest - no issues after 4+ years of using it!
Hi Joan! I’m not sure what you’re needing for help - I’m not a medical professional and I actually have never had a hernia so I don’t have any experience I could share there. It’s possible someone else in our community has though and maybe they will respond on this post. Is the hernia near your stoma? In the meantime, I’m assuming your doctor has diagnosed you with a hernia? I would definitely refer you back to them on what the treatment plan would be or at least talk to a stoma nurse. Maybe they can recommend abdominal support belt too. I would certainly ask them if that would be helpful but definitely get back with them on what you need to do to keep doing your daily activities safely etc…
Hi Rhonda! First, I’m so sorry I haven’t responded till now!! Your comment was held by RUclips for some reason. Some words are picked up no matter what so I apologize I’m just seeing this!! I’m so sorry your experiencing this pain!! I was quickly diagnosed with inflammatory arthritis after my IBD diagnosis even before my surgery. I’m not sure if you’ve been checked for any joint problems but I’d definitely talk to your primary doctor about it. There are some blood tests they can run for inflammation markers but doctors can be often stumped at pain symptoms with no obvious reason so they tend to run a lot of tests. Many people report just feeling like 💩 after surgery too - it’s a huge invading of the otherwise closed body and manipulating it to save our lives but can certainly be different for all of us - we all heal differently and it can take some time. Other medical conditions can be affected just by anesthesia and surgery too. I’m not a medical professional of course, but please do advocate for your healing to find the answers and get effective treatment. An ostomy is meant to make our quality of lives better - bring it back even better maybe - I pray that for you!! 💜
Hey - totally get that!! In fact, folks that have watery output have asked me why even use it - good point! But - I’m much thicker now than my first few years so I do need the liquid sometimes more than others. I don’t know about WET - I’ll have to look that up! And Hollister - is that another “Adapt” product? Ima go ahead and start ordering some samples bc y’all are bringing it lately on the suggestions wooot!! 👍🏻 Thanks a bunch!
Hey there! You can get some free samples via Coloplast here: products.coloplast.us/coloplast/ostomy-care/brava/brava-lubricating-deodorant/ or calling (USA) 1-800-795-5492. You can order the retail product through many medical supply companies (best choice probably if you have insurance) or even on Amazon. 180 Medical, Liberator, and Edgepark are a couple of suppliers I’m familiar with. I’m not sure how the prices are without insurance but you can try it first for free and see how / if you like it before purchasing. Hope that helps!
Hi Shirley - your question is “can this be translated to Portuguese?” I’m not sure I can do that on my end but on your end it may be possible. Are you seeing closed captions - and in English? You might be able to change the language on your end to Portuguese in closed captions settings. I’ve honestly not been asked this but I will ask the community if they know how to do that. Community: Does anyone how to do this?
Brooklyn I’m so sorry that’s happening! I’m not a medical professional so my first suggestion is always to call your stoma nurse. If you don’t have a stoma nurse call the surgeon’s office or local hospital. Having said that, are you his caregiver and are you able to apply any kind of warmth & gentle pressure - like with your hands for a few moments, when you are applying a new wafer or bag if one piece? An ostomy belt helps too. Is his skin irritated?
@@TheKarahLife my dad had this for the past 5 years he used to do it himself allways had problem with the bag cuz he skinny but he catched corona and was in the hospital for two week and lost 5 kg so now he even more skinny just got back today and he not able to change it anymore or do much by himself my mom taking care of him she gonna call tomorow medical professionals to see what we can do but I think till he gain some weight it gonna be hard for it for it work but ya his skin irritated i was just trying to find out people who have this condition know any tips or tricks
Oh my goodness I’m so sorry he’s having so much trouble! I honestly myself have not had a problem with a wafer not sticking otherwise I’d be happy to make a recommendation on what’s helped me. What supplier or manufacturer is he using? Besides using warmth, the nurses or customer service people at the supplier and manufacturer may have some ideas too. Since RUclips and Google are the same company you might try using Google search engine and type in “Ostomy wafer not sticking” or “how to keep Ostomy bag on” & see what may come up. I’m sure some of the other Ostomy channels will have something on it. I found Amber at the ostomy diaries, Eric at the vegan ostomy both have a video on this but if you try the search, there’s probably others too. Eric’s video: ruclips.net/video/lEIcbajxDbY/видео.html Amber’s: ruclips.net/video/MgP3hH6zFjY/видео.html I hope that helps and he’ll be able to get back on track soon!! 🙏🏻💜
Also is mom using the stoma powder and crusting method to help with the skin? That is something I’ve had some experience with and totally get relief doing that.
@@TheKarahLife ok i will look it up and gather information that might help thank you for taking time and reading my messages it meaning look :) have a good day
Thanks for sharing that, Robin! I can understand how that could happen. It’s quite slippery and must spread easily. I actually use Avon Skin So Soft on my exposed legs / arms etc for mainly avoiding mosquitoes but almost 6 years post op and I still haven’t tried any type of substance not specifically made for the ostomy pancaking challenges. I can’t say I won’t, but I just haven’t needed to since the Brava works well enough along with the other things I do (rinsing & leaving some air, water in the pouch, limit some foods that are sticky by nature). I’m glad it does work for some bc it’s good to have an economical and readily available alternative the way supplies cost so much for so many (here in the USA anyway) if it works and is safe!
Oh hi Bob!! I never thought about olive oil in the pouch. 👍🏻 Glad to hear that that’s working for you - Thank you for sharing all the way from Australia 😎!!
Hi Gertrude! I do not, but you can email me! If you go to the channel description, at the top of my channel page, scroll to the bottom where it says "email", it will ask if you are a robot (cuts down on spam as opposed to me sharing it here) and my channel email is there. =)
Generally speaking, yes Jodia. Staying hydrated can be more tricky for people with no colon. Even a non-functioning colon. I struggled with dehydration for most of my life - long before my surgery. Now, it is possible for anyone to drink more water than we really need - which is why getting hydrated from food sources as well as drinking water, cutting down on caffeinated & artificially sweetened beverages and even adding drinks with electrolytes (ask your doctor first) is so important for us. It’s all about finding the balance that works for each of us.
I am from Zanzibar (google it). Thank you for the details about pancakinh. I used Brava deo but it's very hard to get suppliers from this part of Africa and it ends up be very expensive. I tried baby oil and it worked fine infact more than brava, problem it changes the colour of the pouch into brown insted of being clear and so as my stool. I want to try and mix the two.
Hi there! Whatever works for you and doesn’t interfere with your stoma. I certainly can’t give medical advice, but there are community members who have no problem doing the baby oil. It’s also possible to thin out your output, naturally - meaning by maybe drinking more fluids, or balancing fiber and water, etc…but I do love the Brava and I’m fortunate that I have a small co-pay with my insurance. I do try to make it last though because most of my pancaking happens when I’m sleeping so unless I know I’m going to eat something that’s not going to smell well coming out the other side, I generally will save my Brava for overnight. Thanks for sharing with us!!
Pinch the outside of your ostomy bag right in front of stoma . Pull it out and away from stoma , then give it a few shakes up and down and side to side ! This will dislodge the output from the bag and allow it to fall down to the bottom ! Occasionally , if I have drained a rather thick output , I will put maybe a half ounce of water back into the bag before I seal it up ! Especially before bed time ! Drain and rinse out has more than tripled the life of my ostomy bags ! I am glad to learn that I am not alone in this practice !
Great suggestions!! Sorry I’m replying so late - YT had your comment in pending 🤷🏻♀️…Thanks so much for sharing what works for you 🙂!!
Hell no u not lol I'm going through it right now.
Oh man - I'm so sorry to hear that! I hope it gets better for you soon!!
Hi Karah. I've watched a number of your videos as well as those of other ostomates because I am totally responsible for taking care of my wife's Ileostomy equipment and I'm always looking to learn from others. She is bedridden and cannot stand or walk yet because of what septic shock and a fungal yeast infection in her blood post surgery has done to her. I've been her 24/7 caretaker for 18 months. Thanks for sharing your experiences in these videos. I don't know how y'all make these videos and share them via RUclips or I'd probably make a few of my own in the hope of helping others. Claudia Ann's Stoma, that she named "Stella Stoma" is very unlike any other I've seen after watching more than 50 RUclips videos. In addition to being shaped more like a football and egg mix instead of round like all the stomas I've seen, it's also almost flush with her body instead of protruding from a half inch to an inch or more from her body. This combination has created many unique challenges I've worked hard to overcome and remedy for her. She doesn't have an Ostomy doctor that I could ask for help. So, in addition to RUclips videos like your's, I've spent hours on the phone speaking with several Ostomy equipment manufacturers and even sending the photos of Claudia Ann's Stoma. I'm currently using Convatec Ostomy equipment on Stella: convex moldable wafers, Akin slim seals, drainage clear pouches, crusting powder, adhesive remover, protective skin barrier spray, and pouch lubricant and deodorant. I always rinse her pouch with fresh water every time I empty it. Also whenever she suffers from Peristomal skin irritation I use a Convatec wound healing sheet applied directly to her skin before applying the Akin slim seal and then the new moldable wafer and pouch. I'd send you a picture of her Stoma if I knew how. Thanks for your time if you've read all of this. Claudia Ann's husband, FM Chandler
Hi FM!
First of all I am so sorry that I’m just seeing your comment now! For some reason, RUclips held a couple of my channel’s comments in the “review” folder, and that can usually just be one word that triggers the review for safety readings according to Ai 🤷🏻♀️.
Thanks so much for sharing a piece of your story and your wife’s journey with us!! if you have time, I would consider sharing with folks who are also 24 seven caregivers, and need to connect. Making videos isn’t very hard. All of mine have been done on either an iPhone 6 or an iPhone 11. I use an editor app too. It’s just a matter of getting going, because as @ThinkMedia says, “just hit record”. They are an excellent resource (a LOT of free advice) so definitely check them out.
I had to accept that my earliest videos were going to be probably some of my most interesting to figure out what I was doing!! I’ve only been at this a couple of years now, but I’ve learned a lot. The funny thing is those earliest videos are the ones that seem to be watched and commented on the most so I’m glad I started! The bottom line is I share so others will know that they’re not alone, and hopefully my experience on this journey can provide encouragement and help to someone else. You have just shared some incredible experience and first-hand knowledge. If you are feeling compelled to share that with the world and obviously if your wife is fine with that you could definitely help others this way! I’ve only seen videos of ostomy patients confined to a bed minimally or it’s stoma nurses practicing on a mannequin. After months of PT for my initial mobility issues, I was able to walk again without assistance, so I do understand minimally what that looks like, having a new ostomy and trying to navigate mobility wise.
As for your wife’s stoma journey with Stella, I definitely would’ve recommended a convex for a flush Stoma and contacting the manufacturer’s nurses etc…Maybe somebody else here in the community has something else to share. It seems like you have been doing everything I would do if my husband were they still my patient and not me!! What a blessing you are to Claudia Ann, I’m sure!!
It’s sad that many places all over the world do not have enough ostomy nurse is to go around. My general surgeon’s office who did my ostomy does not but the hospital does, they have a UOAA group, and my colorectal surgeon does have the nurses. I’m not sure where you’re located but if you’re in the USA, where we have a lot of teaching hospitals, they may possibly also have at least one or two wound care nurses or “WOCN”’s. I don’t live close to my colorectal surgeons office, but they allow me to do FaceTime and send pictures via email if I have a question.
I hope some of this helps but it really does seem like you are already on top of it so well!! Thanks for being a part of this community! Even just sharing what you did I’m sure is helping somebody else who finds this channel but if you do start one, definitely let me know so I can refer to you too!!
Blessings to you and your sweet wife 💜!!
Thanks for knowing what pancaking is had no idea you said exactly simple words❤
Awwwe you’re so welcome! Glad it helped 🥰!!
Thank you so much! Ostomy wearers are so helpful! I found out that the appliances I was wearing was causing a breakdown of my skin by another ostomate saying she was allergic to the adhesive. Well so am I! It would have been disastrous had I continued to wear that product another month!
You’re very welcome, Barbara - we definitely learn from each other! 🙂 I’m so glad someone shared that info with you too!
Thank you so so much.. all new to me ... only 7 days !! thank you !!
You’re so welcome, Ericapanama503!! You got this and we are here to help you too!!
Great tips! I put that Brava product on my list of things to get.
Awesome! Let us know how it goes! I guess I could put a disclaimer that this is not a sponsored video or channel lol (because Coloplast probably doesn’t even know that I exist but that’s OK as long as people are getting benefit from it!) 😎
I love your videos, they’re very helpful. Thanks for your work ❤️ sending love from Poland :)
Awwwe Thanks!! I’m so glad to hear that, Teresa!! 💜
Excellent and very useful info. Thank you.
Thanks so much!! I’m glad you’re finding this channel helpful!! 🥰
I've had a colostomy bag for two years. When I was having chemo one of the nurses had an ostomy. She suggested I use a few (1-5) drops of liquid coconut oil. I do alternate it with the Brava liquid deodorant lubricant if my output is stinky. I get a full 7 days of wear out of my bag 95% of the time and haven't had the oil degrade the seal, but I put move it around so it is below my stoma in the lower part of the pouch. Thanks for the video it was very informative!
That’s good to know, Melanie! Thanks for sharing that option! How are you doing now?
I’m curious too; Did you find treatment change your output any? Odor or otherwise?
@@TheKarahLife During chemo I experienced pancaking constantly. My bag came off at least twice a week and I would have a leak-I was frightened to go out. The skin around my stoma was cracked and weeping. I was a mess. Plus I was on Prednisone,-before I was on it I wasn't hungry ( between radiation and after my surgery I lost 70lbs) Then during chemo I was hungry because of the meds. So hence the pancaking-you can only eat so many croissants in a day🤣. Anyway things are much better now. The only foods I have a problem with as far as odour are broccoli and fast food-burgers. I tend to stay away from both.
@@melaniepoulton6738 Goodness!! I’m so glad to hear you’re doing better now! Quite the ordeal you’ve been through!!
Oh yes - nothing like broccoli…😝 Even before my ostomy - but I generally don’t touch it now either.
Good morning Miss Karah, just wanted to say thank you for the information...pancaking is a nightmare for me, so any suggestions are a great help. I was recently (2 days ago lol) looking for a medical supply store in my area (very rural) and stopped at the closest pharmacy to ask where one is. I told the counter person I was looking lubricant and why, she said, "could you use baby oil or olive oil?" A pharmacist in the background all but leapt over her desk and said, "no no no no, don't use those, your seal will fail faster. Plus the perfume in baby oil can cause a bad reaction for some people on the stoma. Use a water-soluble, fragrance-free oil if you need to...but medical grade is best." She went on to explain that non-water-soluble oils degrade the sticky/seal, which is why they work so well to get my flange off, plus are difficult to wash off the actual stoma. She said her husband is an ostomate, so she has learned through trial and error and lots of questions to his doctors. She did say that I could use them, but to be aware they would likely decrease my wear time. Hope this helps someone, I'm not sure which oils are water-soluble but am just sharing what was told to me.
Also a question, how much water/liquid do you intake daily? I know I drink between 62 - 112 oz. and my output thickness is still regularly an issue. Many blessings.
That is great information Charmin!! Thank you so much for sharing that!!
I know when I see people talking about baby oil - especially on RUclips - I think that they must have tried it themselves and that’s fine - like I always say - whatever works for you.
I wanted to try my Avon Skin So Soft because I love the way it smells, and feels on the outside of my skin but I am nervous about what it would do on the inside so I don’t.
Excellent data to pass on!! 💜
FYI - Opinion varies from individual to individual. In my case, my ostomy nurse says that there is absolutely no issue with using baby oil. I might mention that you can also get scented baby oil that helps to deoderize. The Brava lub/deo is great, but my insurance doesn't cover it or it would be my go to. Also, everyone is different and their body doesn't respond the same as the next person's. I would like to mention though, that I have seen folks talk about adding drops of essential oils directly to the pouch, and that is an area that you need to be careful as they are supposed to be used with a carrier.
Absolutely Margie! We may all share the same general “make up” as humans and have ostomies, but what works for one, may not for another. Thanks for sharing that info!!
I immediately ran the stairs down to my mother, opened her pouch to let air in it and closed the filter with the sticker. I hope it works. I'm taking care for my parents 24/7. My mom has a colostoma since April. All went fine untill the last days. I didn't know why this pancaking is happening. By now. If the sticker on the filter works I will be the happiest daughter ever 😅. Fingers crossed. Thanks for your video
I’m so sorry I’m just seeing your comment! For some reason YT put it in pending 🤦🏻♀️. I have to know - did the sticker work? I hope so!
I know my “air” increases for many reasons - from types of food & beverages I ingest to how fast I eat. My pancaking can be related to the food and even not having taken in enough fluid. It can be a real challenge when trying to balance nutrition and this challenge.
God bless you!! Taking care of both parents is nothing short of selflessness! 🥰
@@TheKarahLifeyes, it worked great. No pancaking anymore. I'm so happy. It's so easy to change the pouch every day. All is clean. No damaged skin. No leaking. I sent an email to the nursing service and told them what they can do to prevent this problem. Unfortunately I've never got an answer. It's so sad that nobody cares. Well. I found the solution here. Thanks for your help ❤😊
Oh my gosh I'm so glad to hear this for your mom - and you!! I'm so glad you reached out to the nursing service but it is too bad you didn't get a response though =( Hopefully it's just an oversight and maybe they will use the info - we can hope =) Sharing here by all of us is helping each other and those who have yet to find us but if they search, they'll find a bunch of us sharing what works for us =)
Thanks for the info! I am a dialysis patent and fluid is always an issue. Just another issue to learn about nah nah!
Oh bless your heart Virginia! You do have a lot on your plate! Definitely hydration is crucial when you’re talking kidney challenges!
I lived with a blocked kidney for years and now it’s distended but thankfully it is not damaged to the point where it needs any assistance. They do have me check it every few years to make sure. I am super vigilant about hydration because of my history of dehydrating and malnutrition apart from the kidney issue - primarily because of inflammatory bowel disease. 🤗💜
Hi karah. 👋 I just love watching your videos. Lots of information I need to know. I will be getting my colostomy on March 17. So you are so helpful 🙂 will keep watching you. Thank you 😊 💓
Awwwe that's so sweet of you to say!! Thank you!! I'm so glad it's helpful to you!!
In case you didn't know, there's a great group of ostomy ladies on Facebook if you're interested. I've mentioned it a few short times, but I don't "blanket share" it to the world (here on RUclips) because I don't want to see it spammed by people who it's not for, but if you want to connect with other ladies (ileostomy and colostomy), check out "Ladies Ileostomy Group" on Facebook. You'll answer a few questions to join, since it's a private group but there's some amazing women there. Some who've not yet had their surgeries & some with 40 years of stoma life! Incredible experiences shared and from all walks of life & reasons for needing a stoma. Just an FYI if you're interested =) **HUGS**
💜
Oh! And keep us posted on your surgery too!! If you don't mind, I'll be praying and looking forward to hearing how it's going!
Welcome Betty!
@@TheKarahLife thank you Karah. 😊 I'm going to need prayers and strength. Just want to hear the words Cancer Free. I'll deal with it, what it takes!I will keep you posted. Much love 💘
And I do know that I have the Lord holding my hands
Thank you for the good info.
Any time! Thanks for the kindness, Constance!!
Mine pancakes almost always, then when I have a more loose stool it will leak every time. Thanks for the suggestions. I have a few things I can do to help
It can be such a pain!! Trying to get the right balance - without sticking - almost seems to be a dream 🤷🏻♀️😢
You’re very welcome, Alicia! I’m all for whatever works well and safely.
Hello
Please tell me how I can keep my attached stoma equipment dry and or what to wear over it when I go swimming.
Not very clear on whats out there ?
Thank you 🙂
Hi Susan! Thanks for your question. Did you have a chance to look at my showering video?
ruclips.net/video/gVSJUJYW0AY/видео.html
Or the “I swam with a stoma” video? ruclips.net/video/fvCz4JasPKg/видео.html
In the showering video, there’s ideas for covering but nothing I have found has ever kept my pouch completely dry - even those little plastic covers I show. Not 100% dry anyway…
In the swimming video, I didn’t use anything to cover my pouch. I know some people don’t like the feeling of a wet pouch and I totally get that but all I did was wear my bathing suit in the water and then went to my van to dry off.
So I do believe There are some companies out there that claim to keep you dry, but honestly, I have not spent any money on those because I really don’t mind just drying the pouch off. They are made to get wet so that we can shower and as long as I dry the bag/pouch and the tape holding the wafer on, I’m still good for several days after I get it wet.
I actually do own a swimming bottom from this company, but I ended up putting on weight after my surgery and it currently does not fit. But again - I don’t mind my appliance getting wet. You might look into them and see if there’s anything there you want to try but I can’t recommend first hand because I just haven’t use mine.
www.ostomysecrets.com/collections/womens Be sure to check around for coupons too because they often promote a small percentage off their products. Honestly, a little too pricey for me but I can tell you the quality is good.
I’ve also heard of some people using the Brava strips for swimming and I’m trying a new one out that ConvaTec makes that is a little extra adhesive strip just in case the wafer tape begins to peel. I’m actually trying a few different new products and will be doing videos on those soon.
ruclips.net/video/TBcX_5YzjNU/видео.html
If you have a medical supplier / distributor, you might also ask them to recommend as well.
Have you checked out Laura’s videos? I’m not sure if she is still involved in this company, but she did some great videos on basic ostomy life. @shieldhealthcare
ruclips.net/video/AhJ1Q4X6v1w/видео.html
I hope that helps or at least to point you in the direction of finding some products you might try!
Blessings!
Karah
Thank you. 🙂. I will check this out.
Susan
You’re very welcome!
Im new to this. Please tell me where to buy the libricating liquid , bravo .
Hi Susan!
I get my supplies through an online medical supply company. Right now, that’s either Edgepark or Byram. I’m not sure where you are located but they may only be for the United States. If you don’t have access to an online or in-person medical supply, you can check with Friends of Ostomates Worldwide as they collect donations for supplies and then send them out to people who need them.
- Edgepark: my.edgepark.com/ostomy/deodorants-and-cleansers/c/L2-19
- Byram: www.byramhealthcare.com/
- F.O.W.: www.fowusa.org/
Otherwise, you may be able to find on Amazon, Walmart (partners with medical supply houses), or even contacting the ConvaTec folks directly: www.convatec.com/ostomy/right-after-surgery/
Do you have access to a stoma nurse? That can be another option.
And then, the UOAA (United Ostomy Assoc of America, www.ostomy.org) has group meetings for support and often times people will donate unused supplies.
Hope that helps!!
I enjoy your videos. I’ve had my ileostomy since January 7th. I’m thankful and enjoy your videos. When adding a lubricant is it okay to get on the stoma?
Awwe Thanks Jennifer!! I’m so glad this channel is helpful!!
I certainly do since it’s designed to be applied inside the pouch (when using the items specifically designed to, like the Brava I mention).
I can attest - no issues after 4+ years of using it!
I have a hernia and don't know if it is a bad thing or not. If you could help I would apricate it. Thanks, joan
Hi Joan! I’m not sure what you’re needing for help - I’m not a medical professional and I actually have never had a hernia so I don’t have any experience I could share there. It’s possible someone else in our community has though and maybe they will respond on this post.
Is the hernia near your stoma?
In the meantime, I’m assuming your doctor has diagnosed you with a hernia? I would definitely refer you back to them on what the treatment plan would be or at least talk to a stoma nurse. Maybe they can recommend abdominal support belt too. I would certainly ask them if that would be helpful but definitely get back with them on what you need to do to keep doing your daily activities safely etc…
Ive had mkne for only 6 weeks and i have trouble with my bones hurting so bad. Any ideas what causes that
Hi Rhonda!
First, I’m so sorry I haven’t responded till now!! Your comment was held by RUclips for some reason. Some words are picked up no matter what so I apologize I’m just seeing this!!
I’m so sorry your experiencing this pain!! I was quickly diagnosed with inflammatory arthritis after my IBD diagnosis even before my surgery. I’m not sure if you’ve been checked for any joint problems but I’d definitely talk to your primary doctor about it. There are some blood tests they can run for inflammation markers but doctors can be often stumped at pain symptoms with no obvious reason so they tend to run a lot of tests.
Many people report just feeling like 💩 after surgery too - it’s a huge invading of the otherwise closed body and manipulating it to save our lives but can certainly be different for all of us - we all heal differently and it can take some time. Other medical conditions can be affected just by anesthesia and surgery too.
I’m not a medical professional of course, but please do advocate for your healing to find the answers and get effective treatment. An ostomy is meant to make our quality of lives better - bring it back even better maybe - I pray that for you!! 💜
I dont like the Brava lube its smells good but its to watery for me. I use Hollister lubricant instead its thicker or WET lubricant brand 🤣🤣🤣
Hey - totally get that!! In fact, folks that have watery output have asked me why even use it - good point! But - I’m much thicker now than my first few years so I do need the liquid sometimes more than others.
I don’t know about WET - I’ll have to look that up! And Hollister - is that another “Adapt” product? Ima go ahead and start ordering some samples bc y’all are bringing it lately on the suggestions wooot!! 👍🏻 Thanks a bunch!
Where do get the Brava Lubricating deodorant?
Hey there! You can get some free samples via Coloplast here: products.coloplast.us/coloplast/ostomy-care/brava/brava-lubricating-deodorant/ or calling (USA) 1-800-795-5492.
You can order the retail product through many medical supply companies (best choice probably if you have insurance) or even on Amazon. 180 Medical, Liberator, and Edgepark are a couple of suppliers I’m familiar with. I’m not sure how the prices are without insurance but you can try it first for free and see how / if you like it before purchasing.
Hope that helps!
Tem como traduzir para português?
Hi Shirley - your question is “can this be translated to Portuguese?” I’m not sure I can do that on my end but on your end it may be possible. Are you seeing closed captions - and in English? You might be able to change the language on your end to Portuguese in closed captions settings. I’ve honestly not been asked this but I will ask the community if they know how to do that.
Community: Does anyone how to do this?
My dad really skinny so he having trouble sticking it so each time he eats it goes everywhere it happen 4 times today is there anything we can do
Brooklyn I’m so sorry that’s happening! I’m not a medical professional so my first suggestion is always to call your stoma nurse. If you don’t have a stoma nurse call the surgeon’s office or local hospital.
Having said that, are you his caregiver and are you able to apply any kind of warmth & gentle pressure - like with your hands for a few moments, when you are applying a new wafer or bag if one piece? An ostomy belt helps too.
Is his skin irritated?
@@TheKarahLife my dad had this for the past 5 years he used to do it himself allways had problem with the bag cuz he skinny but he catched corona and was in the hospital for two week and lost 5 kg so now he even more skinny just got back today and he not able to change it anymore or do much by himself my mom taking care of him she gonna call tomorow medical professionals to see what we can do but I think till he gain some weight it gonna be hard for it for it work but ya his skin irritated i was just trying to find out people who have this condition know any tips or tricks
Oh my goodness I’m so sorry he’s having so much trouble! I honestly myself have not had a problem with a wafer not sticking otherwise I’d be happy to make a recommendation on what’s helped me.
What supplier or manufacturer is he using? Besides using warmth, the nurses or customer service people at the supplier and manufacturer may have some ideas too.
Since RUclips and Google are the same company you might try using Google search engine and type in “Ostomy wafer not sticking” or “how to keep Ostomy bag on” & see what may come up. I’m sure some of the other Ostomy channels will have something on it.
I found Amber at the ostomy diaries, Eric at the vegan ostomy both have a video on this but if you try the search, there’s probably others too.
Eric’s video: ruclips.net/video/lEIcbajxDbY/видео.html
Amber’s: ruclips.net/video/MgP3hH6zFjY/видео.html
I hope that helps and he’ll be able to get back on track soon!! 🙏🏻💜
Also is mom using the stoma powder and crusting method to help with the skin? That is something I’ve had some experience with and totally get relief doing that.
@@TheKarahLife ok i will look it up and gather information that might help thank you for taking time and reading my messages it meaning look :) have a good day
Baby oil seeps under the flange, at least that was my experience. Brava helps a lot.
Thanks for sharing that, Robin! I can understand how that could happen. It’s quite slippery and must spread easily. I actually use Avon Skin So Soft on my exposed legs / arms etc for mainly avoiding mosquitoes but almost 6 years post op and I still haven’t tried any type of substance not specifically made for the ostomy pancaking challenges. I can’t say I won’t, but I just haven’t needed to since the Brava works well enough along with the other things I do (rinsing & leaving some air, water in the pouch, limit some foods that are sticky by nature). I’m glad it does work for some bc it’s good to have an economical and readily available alternative the way supplies cost so much for so many (here in the USA anyway) if it works and is safe!
its bob here not judy ,i used spray can of olive oil into bag just prior to putting on works ok all the way from best country in world AUSTRALIA
Oh hi Bob!! I never thought about olive oil in the pouch. 👍🏻 Glad to hear that that’s working for you - Thank you for sharing all the way from Australia 😎!!
Do you text, I have questions
Hi Gertrude! I do not, but you can email me! If you go to the channel description, at the top of my channel page, scroll to the bottom where it says "email", it will ask if you are a robot (cuts down on spam as opposed to me sharing it here) and my channel email is there. =)
Miralax
Does that help the “stickiness” for you?
Ok so the more water u drink it's the better for person with stoma
Generally speaking, yes Jodia. Staying hydrated can be more tricky for people with no colon. Even a non-functioning colon. I struggled with dehydration for most of my life - long before my surgery.
Now, it is possible for anyone to drink more water than we really need - which is why getting hydrated from food sources as well as drinking water, cutting down on caffeinated & artificially sweetened beverages and even adding drinks with electrolytes (ask your doctor first) is so important for us. It’s all about finding the balance that works for each of us.
I am from Zanzibar (google it). Thank you for the details about pancakinh. I used Brava deo but it's very hard to get suppliers from this part of Africa and it ends up be very expensive. I tried baby oil and it worked fine infact more than brava, problem it changes the colour of the pouch into brown insted of being clear and so as my stool. I want to try and mix the two.
Hi there! Whatever works for you and doesn’t interfere with your stoma. I certainly can’t give medical advice, but there are community members who have no problem doing the baby oil.
It’s also possible to thin out your output, naturally - meaning by maybe drinking more fluids, or balancing fiber and water, etc…but I do love the Brava and I’m fortunate that I have a small co-pay with my insurance. I do try to make it last though because most of my pancaking happens when I’m sleeping so unless I know I’m going to eat something that’s not going to smell well coming out the other side, I generally will save my Brava for overnight.
Thanks for sharing with us!!