These Will Change How You Manage Your Stoma | Ostomy Accessories | Let's Talk IBD
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- เผยแพร่เมื่อ 5 มิ.ย. 2024
- There are SO MANY accessories for use with ostomies. In today's video, I am sharing a ton of the things available to us.
02:28 Skin Prep amzn.to/3OPSt64
05:07 Adhesive Removers amzn.to/3UNCclT
06:56 Adhesives amzn.to/3wxFW0L
08:09 Barrier Rings & Paste amzn.to/3wqANrx
13:59 Filters amzn.to/3SEhgv6
15:45 Deodorizers amzn.to/3SKGJTx
18:03 Gelling Sachets amzn.to/3SP6GBo
18:45 Stoma Powder amzn.to/3I8kpP6
20:52 Liners amzn.to/3uy3OB4
22:13 Pouch Covers
23:47 Ostomy Wraps
24:31 StomaGenie amzn.to/3SKtUJ1
25:45 Flange Extenders amzn.to/4bHp3kx
26:43 Ostomy Belts amzn.to/49yQgEk
27:43 Protective Belt
28:51 Hernia Belt
30:28 Stoma Dome amzn.to/49mAnRk
31:33 Lubricant amzn.to/3uIqAGs
For 𝙗𝙪𝙨𝙞𝙣𝙚𝙨𝙨 & 𝙘𝙤𝙡𝙡𝙖𝙗𝙤𝙧𝙖𝙩𝙞𝙤𝙣𝙨 requests ONLY, please reach out at maggie@redefined-agency.com!
𝙒𝙤𝙣𝙙𝙚𝙧 𝙬𝙝𝙖𝙩 𝙄 𝙪𝙨𝙚 𝙛𝙤𝙧 𝙢𝙮 𝙫𝙞𝙙𝙚𝙤𝙨?
◈ Camera: amzn.to/3QFyF6P
◈ Vlogging Microphone: amzn.to/3SogUdr
◈ Sit-Down Filming Mic: amzn.to/49g03j4
◈Music Software: share.epidemicsound.com/2vs2jc
◈Editing Software: Adobe Premiere Pro
𝙇𝙤𝙤𝙠𝙞𝙣𝙜 𝙛𝙤𝙧 𝙬𝙖𝙮𝙨 𝙩𝙤 𝙨𝙪𝙥𝙥𝙤𝙧𝙩 𝙢𝙮 𝙘𝙝𝙖𝙣𝙣𝙚𝙡?
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*This video is not meant to diagnose or treat any illness or condition. This is for entertainment purposes and to get you thinking! Please ALWAYS refer to your physician for medical care.
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Hi, I'm Maggie and I have Crohn's disease. I am thrilled to be here sharing my personal experiences with Inflammatory Bowel Disease as well as living with an ostomy. I'm proud to share a little bit from a clinical experience as well, having worked as a GI pediatric nurse and ostomy telehealth nurse. I am so glad you are here. ♥ #ibd #crohnsdisease #ostomy
Retired nurse here. Worked for years as a certified wound, ostomy, continence nurse. We saw all new ostomates and also followed up in clinic. I’m so sorry it appears many ostomates don’t appear to have support and education in the hospital and as outpatients. The less products you use, especially in direct skin contact the better. The phalange ideally needs to adhere to clean intact skin. Paste is caulking not glue. Paste, rings and strips help when it is difficult to shape the wafer opening to an irregular stoma. A nice budded stoma is ideal. This lovely TH-camr has a lovely budded stoma on a flat abdomen. Ideal! There are many problems associated with flush or retracted stomas. Anyhoo, try to see a certified ostomy nurse if you can. Peace.
You are so correct in that I was not given any information at all and fortunately had a niece who helped me long distance with face time. I was hospitalized and not even given a proper diet.
Your experience is very similar to what just happened to my 77 year old husband in December after jabbering an ileostomy. He was given yogurt the evening of surgery then a regular diet the following morning. He ended up in so much pain and then no output. 6 days later , still no able to eat, he was taken back into surgery and a revision was done along with an ng tube. After a total of 9 days of not eating he was able to begin clear liquids and slowly move to a regular diet. We saw the WOC nurse twice and both occasions were very quick. I'm so very grateful for Maggie. I've learned what I know from her.
I want her
Babe
I just got my ostomy two weeks ago, and now that I have to change the bag myself, I'm so nervous! Thank you for this video. I know there are supplies I need that I don't have, but this really helped me figure out which direction to go.
I’m so grateful for your info and your open/honest info. I had my first chemo for stage 4 breast cancer and ended up having diverticulitis surgery which resulted with a stoma…a surprise Christmas gift. I’m told that it will get connected at a later time after aggressive chemo & immunotherapy is complete. I was sent HOME with one bag and no supplies. After the nurse checked 6 floors, she found one more bag for me. I was lucky that I live with my twin who is now a retired RN…who knows how to do everything…or else…I would have had a private pity crying party all by myself to deal with terminal cancer and a stoma too. Thanks for all you do.
I’m a home health nurse and this is so common and ridiculous!
Like me... Insurance paid for my operation but having difficulty getting supplies. I was sent home with 3 bags & a promise of a package at my door that never came. $300 later I'm begging insurance to help me pay for products that they don't want to do. How do you cut me open then send me home after 3 days with nothing?! Aetna giving me a hard time... Should I wrap myself up in a hefty bag?! I'm so disgusted, mad & sorry that I have to deal with insurance people daily getting no where... 😢😮
Bless you!
Keep keeping on, may your good days be many, hope you and your sister laugh more than cry during these tough times. Kindest Regards.
You consistently inspire me. I just love your upbeat attitude and because of you I have been able to turn what seemed like a tragedy into something I now consider just one more chore like brushing my teeth. I couldn’t have done it without you. Thanks so much, my dear.
I found your channel while doing research on the topic since I’m currently in college trying to be an RN. I still watch because I know this topic can be sensitive for patients so I want to be as knowledgeable as I can so I can provide the best care possible for these patients
Thank you for being an inspiration to those who have an ostomy. I have had an ostomy for over 55 years. It has never impeded me from doing anything. I found your channel helpful as my skin has broken down slightly and how to deal with it.
I take care of many patients with stomas. Nurses do not receive enough education r/t bowel diseases. Your channel has helped me offer much better care to these patients. Thank you Maggie😊
Thank you Maggie.. Such a doll & very helpful.. Beautiful ❤️
I'm not sure why I keep watching your channel as my ileostomy was reversed 6 months ago but I do enjoy listening to you and seeing how you cope. Had I found your channel 9 months ago, your advice would have been a godsend. In the 3 months I had my ileostomy, I never once changed my appliance myself. I just couldn't bring myself to touch it other than when I was in the shower removing the bag so that my husband could take over the replacement part of the task. God bless him for that, and I owe him big time. But watching you cope with this by yourself, I might have gotten up the courage to do it myself. Then, I might not have felt so trapped and helpless. Anyway, I just wanted to let you know how much I appreciate your putting in the work to help everyone who needs your advice. Thank you. ❤
I had my colonoscopy reversed 1.5 years ago and still watch this channel, you are not alone in this😊
I am a patient of ileostomy done for colonic cancer done 6 months back. But my loop ileogram CT showed a dye leakage at the anastomosis of anal canal and J pouch. So my reversal of ileostomy was postponed for 3 months. May I know after reversal is the life better as I was told that I will be passing motions for more than 10 times a day as I have no rectum but a J pouch as rectum. This looks scary for me. I shall be grateful if you answer my query. 🙏
@@RiaVersteeg LOL I had both my Colostomy and Illeosomy reversed 4 years ago and still love watching her.
Mine reversed over a decade but having issues with my J pouch and staying informed in case I need to go back.
@kishorerajurkar2
I'm going for a sigmoidoscopy next Friday and then more than likely I'll be going for the j pouch.
I'm nervous and I'm glad I found this channel.
I know everyone is different, but I'm wondering if your changing the bag 10 x a day stops you from getting out of the house and doing things?
I had a bowel resection back in 2020 and he took all of the large intestine and only left me with the sigmoid, which left me with chronic diahrrea.
I'm pretty much home bound at this point.
So, are you able to get out of the house and do things? I can't wait to be able to do things with my husband, go out to eat at a restaurant and not have to worry.
Thank you for listening 😊
The nurses in the hospital were not helpful at all. We were in shock after my husband's surgery. They changed his bag once with us & he hadn't eaten in 6 days so if course it was all liquid & super easy. Showed us a 5 minute video that used marbles as an example of output, he had no diet plan & sent us home. This was 15 years ago & we were terrified & traumatized. The products available for him were awful, would get holes in them & fall off. He would actually run out of bags & wafers & it was difficult getting enough supplies to last a month & insurance & the medical supply was ridiculous to deal with. They actually didn't stock enough supplies. I am so thankful his ostomy was reversed & would never want him to go through that ever again. I wish we had your guidance then, we would have been more confident with his situation. Thank you for sharing. ❤
Thank you, Maggie, for sharing this wealth of information about accessories! I developed bladder cancer, and I ended up having the bladder removed. This was just over 5 months ago. There are two words that come to mind in regards to my stoma and urostomy - acceptance and being adaptive. I had a few pouch bursts during my sleep at night, as well as my stoma retracting and bending to my left. I had to accept the fact this urostomy will always be part of me, and finding appliances that adapt to my uniqueness has been a struggle for sure. Here comes the big but - But finding solutions and seeing these solutions work is so reassuring and satisfying. This journey of mine will definitely have ups and downs, with the ups being more frequent as time passes by.
18 months with mine. Doing better than I have in years. You're a sweetheart! Thanks for all your experience and info.
Every new patient needs to see this video!❤
I have super mild UC but watch as I know this may be me some day. I watch so I am prepared and not so scared. Thank you for amazing content!
Thank you so much. This video has answered many questions I wondered about. I have a a colostomy which I dealt with for 5 years. I’m 77 years old. I was diagnosed with ovarian cancer in 2019. That’s how I got the colostomy (sort of collateral damage). Over the last five years, I’ve seen a lot of things change with my stoma, ie it’s gotten larger and I’ve developed a hernia. Anyway, thanks again for your honesty and frankness. It’s helped so much.
Young lady you are a inspiration. I have had crohns disease since I was 15. I'm 66. My last surgery was in 2019. If I have to go through that again. I'm going to tell my doctor I want that done. I want no more surgerys. Thanks for your u tube channel. ❤️👍
Illness changes everything but thanks to Maggie for putting a face on this and helping others by serving and being transparent. I pray that you conceive and have children and please pray for Maggie and her husband to start their family. But one thing that Maggie has is a wonderful husband. He is a hero to me. God bless you both. You make a wonderful team.
I have had my Colo ostomy for 4 months now there are times I have the pancakeing because of diet that has been the hardest part for me so far
Also my insurance not covering different companies but I have been happy with the Coloplast one piece drainable just fear when driving having seat belt to tight
Thank you for all the info and your truthfulness
This was not easy for me but getting better
Prune juice warmed up helps my son when he pancakes.
@belindasingh I had my surgery in '23NOV and had the same concern about seat belts when I left rehab in January. I searched on Amazon for Ostomy Seat Belt Pillow Stoma Seatbelt Protector and found many. The one I bought is from D. Cozy-- it is well made and is a fun floral print. It's very comfortable and made me feel safer knowing my stoma and appliance are protected. Hope this helps you.
@@batlady2343 thank you
@jackielong9927 thank you I will try that
Diet has been the hardest because I can eat one thing and everything is fine then next time the complete opposite go figure just doing my best to stay positive everyday
If you put a piece of sticky tape, one side folded over for easy removal there's no pancaking. Remove the tape and squeeze out the excess air or open the bag when needed. I even sleep this way it's been fantastic.
I use glad sandwich bags (the old fashion fold plastic bag) as a liner. They are cheaper than the liners, however they are not biodegradable. I use an Janibell Akord adult diaper system w/liners, I place a full glad bag liner in a doggie bag, tie it up and place it in the pail. Put a new liner in and away I go. Saves time and money.
Thank you so much for continuing to educate people about ostomies. I am a Stage 4 colon cancer patient currently in remission and has a colostomy for a little over a year. I was lucky that they could reverse mine. However, if my cancer should come back, and depending on where, I'm thinking that I could become a permanent ostomate, so I continue to educate myself. One thing I noticed was that even though others could not smell it, I always could. When I came home from the hospital, my nurse that came every couple of days never really mentioned other brands to me or provided samples for me. I got a one time kit from Holister, and my nurse ordered my items. It actually would be nice if we could get samples of more than one brand without having to look for them, (after all, we are recovering from surgery) or at least pamphlets on the different brands and what they offer. Thanks or sharing!! Take care.
My son has had an ostomy for about three years minus some months when they did a reconnection using his small intestine and a J-pouch. That didn’t work because his body generates a lot of scar tissue and that was causing strictures in the intestines.
Thank you for sharing such beneficial information on products as well as your personal history. You’re proof that someone can live a full life with an ostomy and still be beautiful as well. God bless you.
I love that comment, “We’re better than you”😂😂😂😂😂❤❤
Your videos are so helpful! Thank you for all you do for people with an ostomy. Love your humor as well.
I saw my Stoma in its clear bag almost 10 years ago... I just cried. Thank You Maggie for making my life so much easier then and now.
You have been such a blessing to me. Thank you so much for this video. I’m going on 2 years with my ostomy and Ive done my best to investigate and search out products to make life easier. But this video has shown me items I’ve never seen or heard of and I feel like you relate to every problem I have or have had. I appreciate you sharing your knowledge and answering questions from your viewers to make our lives easier. Thanks again!! ❤️
I’m glad I’d be watching some videos ahead of time… my hospital ostomy nurse was so adamant that adhesive remover was a BIG no no because the bag wouldn’t stick after. I can’t imagine NOT using adhesive remover, my skins raw as is, can’t imagine how much worse it would be ripping ahesive off every few days! Thanks for all you do.
She is right about the regular kind! Often times hospitals don't carry the ostomy-specific ones. Good luck!!
@@LetsTalkIBDi would like to say I just recently discovered you and your videos.
My story is is that I had a bowel resection in 2020 bc of IBS-C and the Dr removed 95%of my large intestine and only left the sigmoid, which left me with chronic diahrrea. I'm pretty much home bound.
I'm going for a sigmoidoscopy next Friday so my new GI surgeon can see how much of my colon I have.
She wants me to get the J pouch (after she sees what I have left). If not the J pouch, then the colostomy.
There's so much to learn, and I want to say thank you again. 😊
I just want to say thank you for the amazing advice. Finished watching 2 of your videos I feel it will help me.
Thanks for sharing with your community all the accessories available to Ostomy patients. I also like your recent hair cut. Keep on sharing!
Thanks so much for this video. Since starting to use protective spray, I have been struggling with leaks and it has massively knocked my confidence. I wasn't sure if there was anything that could be done about it. As I watched the video I emailed my stoma nurse to see what I can add or change to my stoma routine. Why didn't I do it before now?
Great content.Well presented and it gives me more confidence with my new stoma to see you talk about the issues with clarity and confidence.
Well done.
Thank you, a very helpful video showing the different products available.
Thank you so much for this video! I learned so much from it. I had never heard of a stoma dome. Something to look into.
I love all of the trio products!😊
I know I keep saying the same thing, but thank you for all your wonderful advice and for spreading the knowledge. My stoma journey would have been so much more difficult with out you.
Hey Maggie,
Being an engineer and having an ileostomy for almost four years now, I had to come up with a better way to cut the hole in my Hollister skin barrier. The scissors were hurting my fingers and thumb, especially when I got to the 5th barrier. So I bought a metal leather punch that cuts an 1-3/16 diameter hole (my personal size) and found that it cuts a perfect hole when the skin barrier is placed on a clean, flat piece of hardwood, and all it takes is a couple whacks with a dead blow hammer. Sometimes the see-through backing on the barrier doesn’t get cut, but, no matter, the rubber sticky barrier circle is cur cleanly and quickly with no scissors! I have a photo of all the aforementioned items and could email it if your interested in seeing them, just reply with an email address.
LarryS
I am looking to change companies that I get my ostomy supplies because they keep saying they don’t have the specific items in stock anymore. I will have to change my bag today but the barrier spray works best for my stoma because I have allergies to the paste.
This was so informative, especially for new patients. So helpful.
One little trick I had back in my ostomy days was to gently warm the flange with a hairdryer before applying. It seemed to help 'activate' the glue and helped it stick.
Emphasis on gently, your stoma is not very heat resistant.
Also used to dry my skin after cleaning to speed up the process. Again..... gently!
Maggie I love your hair when it’s up! You look great 🎉
Thank you Maggie! Good info. I am going to be trying the stoma dome you suggested several videos ago (and in this video). Always look forward to your videos! Tonight, my wife and I watched it together - a family affair. 😉
I use my esenta skin barrier to remove the leftover stickiness the wafer leaves behind. It works good as an adhesive remover..
one thing you did not mention is high output bags. I cant recommend them enough for night time. 14 yr old son was having to set an alarm to empty at night and now doesn't have to. also the weight at night was pulling on the flange and making wear time shorter. He uses a two piece (flange and bag) with an average size bag for day and the high output bag at night. He gets an average wear time of 5 days now.
You are amazing. Thanks so much for all the great information you share. I know exactly what to ask my stoma nurse at my next visit. How do I get hold of those deodorants that make the contents not smell when emptying 😀.
Oh wow what a fantastic presentation..
Both of your videos are awesome!!! You should sell them!!!
I am getting a cup...thanks
Spray adhesive remover bravo brand changed my life.
I'm fairly new to ileostomy. Just 8 weeks out ! Convatec according foldable flange sample was sent to me! I use 2 part.flange and bag.I put it on and I had it on for about 2 hours, when I started to itch. I looked and all around the skin barrier I was beat red! I took it off and was allergic. I took out my dial soap and water two days later still sore! How can I calm this down?
Great tips great things the way u explain thing
Thank you very much for all this information. Could you let me know a more about the apps you can get.? Also are most of these products available in Australia?
I just had my ileostomy reversal end of january I had a emergency colorectal surgery unexpected and I had the bag for 3 months I bought everything under the sun I used peppermint oil which was really good for deodorizing . And another brand which I can't remember what it was I give you a lot of credit for having such a great attitude because I didn't I was devastated I went in for back surgery and winded up having horrible pains in my stomach and had back to back surgeries I almost actually died in the hospital I got C Diff and salmonella it was horrible. After a 35 day hospital stayI had visiting nurses at home and they did such a lousy job that I had to learn myself and I never had a leak ever when I did it I also went to the wound care center once a week until I felt confident I slept on a bed pad on top of my covers cuz i was so afraid of leaking and I emptied probably 20 times a day I had a ton of output and I had trouble with my electrolytes I had to go for the fusions 3 days a week I kept it so clean that I never got an infection because I have like OCD with being clean in any event my wound is almost healed from the reversal and when I think back and I felt so doomed like this was never going to end i'm proud of myself that I was able to get through this. I Donated all my supplies to the wound care center so I was happy about that cuz I changed my bag every other day I used hollister and because of the excessive amount of output I just couldn't I had to change it every other day so I ordered a lot of supplies in any event you have a great channel and positive attitude.
I'm SO thankful for your videos! It's only been one week since meeting my stoma, so I haven't given it a nickname yet. God bless you for showing the way and sharing your experiences and product information!
❤❤❤ SUPERB ❤❤❤
I have a j tube and have been struggling with skin breakdown. Is there a way to contact you or can you give me some advice on what to use.
what about sura seal flange protector? I just ordered some to try. So I can swim thanks!
Perfect ponytail !! 🫶🏼
Hi, I've got a problem with my Hollister coloostamybag, the upper part of the bag bend over (hang loose). I'ts so thin so that it happens that it open the barrier ring and than I got a leak. Now I tape the upper part so it stays up, but is there something that I can fix under the the upper part so it don't fell down. I'm from Sweden and I've looking on the net but not found something that I can use yet. 24:23
Big fan here Maggie. What brand do you use for the spray adhesive remover please?
Esenta! It's from ConvaTec!
If never seen this befor, is it curable?
Heros with stomas ❤❤❤❤
Come on Convatec let us try the Asenta deodorant spray Please! 😂 isn’t available in U.K. yet! I called them a few months ago as I had heard great reports. 😢
Also m9 is fab but wow it’s expensive (I get on Amazon). I suppose us Brits 🇬🇧 have been spoiled getting things for free. 😊
I had ileostomy surgery about a month ago and I'm really having difficulty coping with this mentally. Kinda feels like my dating life is pretty much over. I'm hoping I don't have to deal with the loss of intimacy, but it feels like that part of my life is over. It's depressing.
Hi Maggie 👋 I'm having problems because I'm dealing with a hernia behind my stoma. The area is a little uneven and my flange gets detached. Any suggestions or products to help. Would really appreciate it. ❤
Oh fudge sounds awful w hernia hehind stoma
For my rather large protruding hernia, I use the Coloplast convex pouch made for that purpose. It's rounded shape adjusts better than flat flanges. I'm careful with my skin as I have had issues, also.
Thank you so much I will look into it. Hopefully it will help
I too have a hernia under my flat stoma.
@@mimmie-qj2ti R u going to have surgery to fix it?
Did you ever listen to "Kent Carnivore" - he is amazing what he experienced and learned about food and how to be in control with a stoma bag.
".....go to the bathroom the old-fashioned way." LoL Before I had my colostomy
reversal done, I was hoping that my rectum remembered what it was supposed
to do!! 😂
Making comments as I go. I tried flange extenders but found knock off micropore (kinda medical masking tape stuff) better and infinately cheaper.
I also use the medical tape for me to put around my flange. It does help.
I will like this inf . Be also in Spanish . But sadly is not one with this much inf 😭
Maggie byram quit sending me adapt remover spray. Said they quit making it. Does another company sell it
I was told the same thing by Byram. Makes me sad. It works the best for me!
Byram is hard to work with. I told them not to send me any Safe and Simple products (they don't allow my barrier to stick). They claim the brand I use (Cavilon) isn't available. I told them my history with pyrodermas, but they don't seem to understand.
I buy my adapt remover spray from Amazon. Out of pocket.
Bryan told me the same
I have ostomy-friend , man, and biggest problem then was active-carbon filters so it stinks - as normal copro stinks. I do not know current situation and because of this I am curious to read ostomy-news.
Una pregunta hacen envios a venezuela Edo.carabobo y si alguien trafuce en español x favor.
Lets have fun
I’m glad you’re in a better frame of mind than I am.
I’ve had my colostomy for close to two years now and I freaking hate it. I’m ashamed of having it to the point that I won’t even take my shirt off in front of my wife anymore.. Even during sex I wear a shirt now.. I just want it gone..
She's your wife, she's seen all of you and has been with you in your most vulnerable moments. I think she can handle your stoma bag. Good luck with getting into a better frame of mind
In the 31 years we’ve been married she’s seen every part of me there is, but it still bothers me though..
@@Caintuckiee sounds tough.
☀️🌼
I have a good topic that you could touch base on how it is to be married to somebody with a Stoma
. Does it affect sex life? Does it affect your relationship at times..
How does your partner feel at times..
A sit down with you and Zac😊
I actually have a few already on my channel with him! :)
My stomach burns all the time!!!!! The skin barrier spray 🥵 BURNS. What options are there. I have around my stomach a small line of skin that is bloody.
I have WBF for that and it helping me.
I don't know how to spell the word in English but maybe "wipes".
I totally stopped using skin protectant and my skin is barely irritated at all anymore. I just clean really well with coloplast’s cleansing wipes and warm water, let the skin totally dry, and then put my wafer on like normal just with no skin protectant. But also make sure ur skin isn’t already irritated in the first place. Unless ur allergic, skin protectant shouldn’t/wont burn unless u already have irritation
How much of the products are covered by insurance??
Stuff like the skin barrier, Adhesive Remover, rings/paste, powder, flange extenders, and sometimes deodorizers usually are! Many of the other items like certain belts you can sometimes apply for reimbursement or use an HSA/FSA account to purchase. Usually things like bags covers or wraps would be out of pocket! It all depends on the individual's insurance however!
As a man with an stoma having a hairy belly is not pleasant when the flange is pulling on your hairs 😅
For me
Hello
So much
All products are not possibal going to get in the hole world. Some you have I want to Sweden.
Some good stuff I got before but not any more. More stuff are going to dicepere soon. It is difficult to prepp stoma produkts so the future is bad for us.
But I have God. ❤
Non stoma person who watches
Thank you so much!!
Me too! My step-dad had a colostomy when I was a kid, so I just find this stuff interesting. I'm amazed at the advances in ostomy care products in the last 45 years. Thank goodness too, as I remember my step-dad's situation being very frustrating for him & my mom. Maggie is very good at educating people in a nice, friendly way.
Adhesive allergy to everything even paper tape is turning my skin red.... 😢
Yes uh huh
Please
GODBLESS.