Ostomy Must-Haves (& Things You Can Skip!) | Let's Talk IBD
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- čas přidán 10. 05. 2023
- In today's video, I share my personal thoughts on what products I can't live without (and the ones I can)! Ostomy supplies can be expensive and you might be limited with what you can get, so below are some of the items I love! Please note, the links below might not be the exact product I use. Explore different brands for ostomy supplies and order free samples to try them out!
Ostomy Deodorizer: amzn.to/3BghHDw
Skin Barrier: amzn.to/3pwRzlj
Stoma Powder: amzn.to/3WbyjpT
Adhesive Remover: amzn.to/44WmLKP
Barrier Ring: amzn.to/42wKfEQ
Ostomy Trash Bags: amzn.to/3pzOn8F
StomaCloak Cover: 10% off Coupon Code: letstalkibd10 at stomacloak.com/stomacloak-sho...
App: www.myfitnesspal.com/
Mattress Protector: amzn.to/3I5wwwt
For 𝐛𝐮𝐬𝐢𝐧𝐞𝐬𝐬 & 𝐜𝐨𝐥𝐥𝐚𝐛𝐨𝐫𝐚𝐭𝐢𝐨𝐧 requests ONLY, please reach out at maggie@redefined-agency.com
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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. ♥ #ostomy #ibd #chronicillness
Hi Maggie you are such a joy to listen to. I have had my ileostomy for 2 years and before I had my surgery I watched all of your videos. I binged on all of them learning so much that when it came time for surgery I wasn't scared. You gave me peace knowing that if you could do it at 16 years old I could do it at my age. The surgery was the best thing I ever did for my health. "Winnie" and I are getting along great. I still am having issues with veggies and fruits but trying little by little to add something new into my diet. I ordered my supplies this week and was told that I could get the bags but the flanges were back ordered. I have extra's so I should be alright. Just wanted to thank you for everything you have done for me. You are a breath of fresh air on the days I am down. Big hugs and blessings to you
Hi Maggie, really appreciate your comments and suggestions and commend you on ease of speaking about this issue.
I am 3 months after the half a year hospital stay and dealing with the ostemy on my own. I got some instruction during the hospital stay but doing it on your own terms at home without nurses assistance it is a completely different game. The supply company had me order products that I was not quite sure if they fit me. The nurses provided me with the products available at the hospital but at that time I was not aware what questions to ask and what products I will need. I received some initial training from the ostemy nurse how to replace the product however nothing matches the situation that you face once alone at home. Everyone's conditions are unique and mine is such that I have lost 40% of my body weight due to surgeries and cancer and my area around stoma is not flat with deep valies and folds from scars and nobody took care to explain what to do with those conditions. I used to have leaks more than 4 times a day every time I changed positioin from siting to standing or laying down, nothing could keep the glue in place and multiple calls to ostomy nurse and visits helped somewhat as well as calling companies and requesting different samples to test and try. I also keep talking to nurses at each company trying to understand how to remedy the condition that I had and also trying to figure out how to keep the products more than a day without leaking and getting frustrated with the whole situation. I watches all of the product videos from Coloplast, Convatec, Hollister and many others online trying to find the best solution. I think I am getting closer to my optimal one but I also talked to some engineers trying to understand how these products could improve and become better. I am still fighting as I may have a permanent colostomy bag to deal with.
The provided list is fine and I use all of those items with the exception of couple but for me the most important part are remaining the cleanliness of the body and skin and avoiding any kind of infection. The other issue in front is feeling confident going out to meet people and traveling to destination as well as planning the trips ahead of time. i just took my first trip an hour away from home which took some mental planing and forcing myself to deal with fears of leakage and embarrassment of the situation for the first time. I am slowly learning to deal with this.
I know you get so many wonderful comments ♡ but I just wanted to say that I have had crohn's disease since I was 15 (28 now) and you have been the most helpful and compassionate CZcamsr on this subject. Idk if it's because you were a lovely nurse for this field or because you go through it yourself, or both... but you are just wonderful and have seriously helped me realize so many things about my conditionin/experience with Crohn's
Thank you Maggie and I pray you have such a good life with Zach. He's also made a big impact on me, his love for you I mean. You can see in each video how much he cares for you and your experience in life and that's really inspiring to see someone not only accept you but be there for you completely. He is a blessing as well as your positive attitude :)
Definitely agree that simpler is better. I use a ring, flange, bag, and paper-thin layer of paste. That's it. Took me the better part of a year to figure it out, but I think I'm getting there.
You do a fantastic job with your videos. I've been through the wringer. I was diagnosed with UC at the age of 25. My father actually passed away from UC when he was only 26. I had my first surgery the 26th of December, 1986. My doctors didn't think that I would be able to cope with a permanent ileostomy so in May 1987 I was sent to the Mayo clinic to have a J-pouch created. I'm sure that you already know what that is. They had taken part of my small intestine and made a loop with it to slow down my output since my colon was already gone. I'd lost a great deal of weight. I was told by my colon surgeon at the time that since I'd lost so much weight that I had to gain a minimum of 10 pounds before they would schedule my last surgery. It took me from May until the end of September to gain the weight. I then went in for my last surgery, the reconnection in October. So during that time I dealt with 2 temporary ostomies. Flash forward to 2014 I started having issues again and we'd discovered that my original J-pouch was starting to deteriorate. I'd had it for going on 30 years. Well I was sent to the Cleveland clinic to have another J-pouch created. I have basically had nothing but problems with my 2nd J-pouch. It had gotten to the point that I was spending more time in my bathroom than anywhere else. About 3 years ago I started talking to my colon surgeon about going back to an ileostomy. He told me that if that was the way I wanted to go that'd he'd do it but he told me that I needed to think long and hard about it first. I asked why and was informed that I didn't have enough of my small intestine to do another reconnection. Well 2 years ago this April I was in the hospital, had spent the weekend there. First thing Monday morning he walked into my room and asked if I was ready for surgery? I said yes so I've had a permanent ileostomy for almost 2 years now. My surgery was over 5 hours long, he thought it would be no longer than a hour. He had to remove tons of scar tissue because of all my previous surgeries. Unfortunately it's not in the best of places so it's a struggle to get my flanges to stay on my skin. I can get 2 days out of a change if I'm really lucky. Most of the time I am doing good to only change once a day. Then there are the days that I can go through 10 changes of supplies in less than 36 hours. If I would have known back in the 80's what I know now I would have just kept my first ostomy. Or at the very least stopped when I received the ostomy I'd gotten less than 6 years ago.
I love how you are always so upbeat on your videos. I know that you probably have your own bad days as well. Watching your videos reminds me that I'm not the only one going through what I'm going through. I also wanted to thank you for reminding newbies that they definitely need to stay hydrated. I fight that on a daily basis. I constantly have something to drink nearby and I have to get 2 fluid infusions a week now. I've also developed CKD. My kidney specialist is a great doctor as well as my colon surgeon. But Dr. G. keeps telling me that I need to worry more about other parts of my body because I can always do dialysis. It's like every time he says that word my kidney levels improve. Needless to say I don't like his other option 😂. Seriously you are a great inspiration to not only myself but to many others. Your videos and your honesty about this subject helps more people than you can imagine.
One thing I found really important for me personally is a stoma guard if I’m going to do anything really active. I’m a wheelchair user, so when I go visit my daughter’s horse, I always use a stoma guard. She’s a great girl, but horses like another other living creature, are unpredictable. I’ve been head butted in the stomach when she was saying a boisterous hello, so a guard probably saved my stoma from trauma a few times. I’ve also used it when using a hand cycle, just in case I crashed.
Another product that I’ve relied on at times is an ostomy belt. Depending on your body shape and posture, your pouch may need a little help staying snugly attached to your body. Especially if it’s the end of the day and your pouch is getting full. Most pouches have clips for belts to be attached.
The other products I consider necessary are skin prep, adhesive remover, and a nicely scented baby oil to spray inside my pouch for preventing pancaking and for odor control. That’s it besides gentle soap and water. Nothing else.
The stoma cloak didn’t work for me, I think I’m just too short waisted and being seated 100% of the time made it worse.
But everyone is different, and everyone will need to experiment to find what works for them over time.
I use straight °91 isopropyl alcohol soaked bounty paper towels instead of guise to clean any residue between bag changes. Also, I apply my Hollister ring straight onto my bag and form from memory a perfect gasket with the barrier seal. Lastly, I always change my bag standing up over a trash can 1st thing in the morning before eating or drinking. If you have any questions, please feel free to ask!??
I have had an ileostomy for 7 weeks now. The first few bag changes were challenging. I did not have Home Health Care come and help because the one change I did in the hospital was so easy. I do my changes every 4 days and the 2nd & 3rd changes were so difficult because I had so much stickiness left on my skin from the barrier rings. And with my stomach area still healing it did not feel good to press on my skin to clean it up. I used 8 adhesive removal wipes each time and still had residue left. Now I am on my 10th change and there's finally not so much stickiness to remove. I found your channel just over a month ago and have learned a lot from you. One of the best things for me was that even after having your stoma for over 10 years you still needed the stoma powder. I hadn't had any of that so I called and had some shipped out right away having a feeling I might need it during my next bag change. I did. I also had some skin sensitivity happen and remembered you had used a barrier wipe to help with that. So I did that, too and it helped. So I am very grateful to you for having this channel and sharing your information!! 💞
I hope it gets easier and easier for you, Jenny. Lord bless & keep YOU. 💖
@@josie4peace Thank you! 💞
@Anon Thank you!
This is a very informative video especially for those who are new to having an ostomy! You’re the best Maggie!💜
I have only had my stoma about a year and a half. Found your channel somehow along the way. I use Ivory soap which the wound nurse suggested because it is mild and doesn't leave any film/residue. I recommend adhesive wipes and barrier wipes (to new people watching this) I also use the rings because that is what I had in the hospital and what my insurance sent and paid for and I have had very few issues with leaks/detatchments although it has happened a few times. I have a pad to help save the mattress which HAS saved it a couple times. I use a blow dryer after sticking my flange on to help it warm up faster. Question does the deodorant stop the smell you mentioned that sometimes happens after a few days. I notice about day 4 I will sometimes have a little odor so I will try that if it will stop that from happening. I would recommend a SPARE pair of scissors for your travel package that people should carry on day trips/vacations so you don't need to remember them. The other thing people should remember is to NOT leave your travel pack in the car if it is hot because your rings can melt. You know these things so this is mostly for newbies except my question about the drops to kill smells. Thanks for helping us navigate our new reality.
I think strips that wrap around the baseplate (flange) on the outside are also helpful. They keep the flange in place and add more coverage to prevent leaks.
They are a game changer 👍 love them. Very comfortable too IMO
Agreed
Been watching you for years… you do such an amazing job of “ok she’s doing it , so can I” mixed with “I don’t feel great and I’ll honor that” no small task, thank you
I use doggie bags for containing and throwing g away old bag etc. My visiting nurse uses them and their cheap and perfect size to know and toss!
Doggy bags are the best, I buy in bulk from Shein
Thank you for all that you do to help new ostomy patients. I am a 63 yo man with a new urostomy bag living in a small place with no stoma nurse nearby (though I can do telehealth with one in LA.) My wife found you for me and your videos have been very helpful.
I have a urostomy too! Since Dec 2017!
Maggie does have great advice. I've been dealing with ileostomies off and on since 1986. I now have a permanent ileostomy that will be 2 in April.
Maggie, I do have a mattress protector on my bed already but due to my situation I've started using the disposable bed liner pads that they use in the hospital. I'm constantly dealing with leaks and it's so much easier to change that than my sheets. Best of luck. Happy New Year 🎉
😮1@@peachxtaehyung
I have an ileostomy and there's ileostomy nurses all near me but none of them will take me because I am 17 years old and I'm not "old enough" to go see the ostomy nurses 😐😐
Hi Maggie! Love watching your videos! You are so down to earth, that when listening to you, I feel as if I am talking to my best friend! Have my stoma for a little over one year, and thanks to videos such as yours, I got so much information on them, that it made it easier for me to adjust to my “new Normal”! Thank you so much, and keep up the good work!!
I've had my ileostomy since 2014 and I am forever grateful that I live in the UK. I've never had to worry about the cost of supplies because they are free on the NHS, including some underwear. The one thing I've found invaluable however, is not free but quite inexpensive. It's liquid gel plaster. I get it from Amazon and a little goes a long way. When the skin around my stoma is raw and weepy the liquid skin covers it and gives it a chance to heal while still allowing the flange to stick, preventing leaks and further sore skin. It works well with the powder too and comes off easily with the spray adhesive remover. I've found very few stoma nurses who know about it.
Can you post a link! I want to try
@randimayes560 hope the above helps. I'm not great at tech stuff!
I use the safe and simple no sting barrier wipes I use one every time I have to change my bag
I've had mine for about 10 years too and you really opened my eyes up on the so I'm more than delighted to follow you
Maggie, you are an inspiration to so many of us! Thank you for all the information /educational wisdom! It is a huge help!!!
A luke warm hairdryer over ring helps mould it
Totally agree with all Maggie this was really very useful for every level of ostemates ❤
I completely agree on everything you said Maggie, one thing that I cannot go with out is my cavilon spray, that sure is the best. Also found that skin barrier from Hollister really works when my skin is damaged, because of my ileostomy I have very high and very liquid output, so I burn easily and sometimes that is the only thing that works.
Thank you so much for this excellent video. Hugs to you and Zak.
I agree with most of what you said. I love the 3M Cavilon no sting spray and wipes. All the other brands seem to oily. I also must have barrier extenders. They give me that extra bit of security I need especially because of the unevenness of my skin around my stoma due to surgery and the brand of pouch I wear (it isn't one of the 3 most used pouches). One thing I disagree on is the gloves. When I first got my stoma it was a high output ileostomy and too many times it would explode while I was changing my pouch so the gloves saved me from having 💩 all over my hands.
Adhesive remover spray.. its top of my list of must haves.. I use this ever single bag change.. also stoma powder.. don't use this all the time but definitely make sure I have it.. x
For some reason I just use way too much with the spray, so I stick to the wipes. The spray is so expensive and I usually use about 4 -6packs per change
Wonderful info for us newbies. The home health has not mentioned a lot of this. Thank you for information. Hugs
I do like long shirts. I am very self-conscious about the bag hanging. Also, I like using the skin tack to help hold the flange on better. More so during the summer months when I swim.
I have started wearing a shape wear top and it has made a huge difference in everything. It keeps everything help up and secure and slims down. I also wear it at night so I can move around and the bag doesn't. I've been wearing it 2 months and no leaks, I'm getting 5 days before change and I could go longer but don't by choice. I do put air in it so the output isn't pancaking
And sinxe it's pressed to my skin the body heat keeps everything set, it keeps everything kinda melted together
Great video once again 👏 Totally agree with everything you said in this video . 👍
You talked about new clothes. I’m still in my husbands big pjs. The pants will land right in middle of stoma. Any suggestion what to look for. I’m not wearing panties due to they cross right on stoma. I’m 72 years old n wish I would have had this surgery 20 years ago. I don’t understand all the nausea. You are a Godsend to me. Congratulations on the 100 lbs. I remember being 94 pounds n they said I would only love two weeks 0:03 if I didn’t get to hospital. It’s a hard road to travel. Prayers n hugs coming your way.
If my bag leaks during the night I tend to have dreams where it leaks and it wakes me up. I’ve had my ileostomy for over 20 years!
Mind blown seeing the way you change your bag while holding it inside the disposal bag. I've had Vesuvius since 9/29/22 after surgery for rectal cancer. This tip is the best. Thanks so much!
I’ve had Ducky since 1.9.22 for the same reason. It’s a steep learning curve and I’ve learnt most of it from Maggie!
ROFL I use small garbage can trash bags with handles for my stoma, they are easier to put a knot in so they are closed. I use the brown Holister bags for walking my dog 😃
Thanks Maggie! ❤
Thank you so much!
Love your videos. Barrier rings (Coloplast, Convatec, and Hollister) don't work for me. I use Convatec Stomahesive Paste because it is legit the ONLY one that works. Fan of Convatec Esenta line... prefer the spray though.
Awesome video. You would make a great WOCN 🥰
Thanks for sharing and take care
Hello I've had mine for 14 year's now . I wish this chanel . was around when . I started out . I had to learn on my own .
Good luck keep your head up
Thank you
Great video thanks
I prefer paste over barrier rings. I have tried many rings and they all work, but I found that I couldn't get consistency. I use Convatec Stomahesive paste. Not only do I get consistency, I get wear times of 10+ days. I have also learned how to use the Convatec paste without making a mess.
I used to love paste, but started to develop granulomas because when the paste would wear down, the harder edge of the cut flange would rub the side of my stoma a little too hard! I found the rings for whatever reason help the granulomas heal!
HI MAGGIE! GREAT VIDEO!. I USE MOST OF THE PRODUCTS YOU LISTED EXCEPT FOR THE MATRESS PROTECTOR AND THE LUBRICANT. BUT AM HOPING TO PURCHASE SOON. HOPE YOU ARE WELL? 🥰❤
I am so lucky with my skin! I am pleased about that. If I ever have issues I have bagglless shower. I have other illness so I have a hospital bed so leeks are not an issue mantras wise . I use Bravia tape as well. I keep a supply vomit bags I am able to empty my bag in as I am in bed or a wheelchair i have some attached to my bed I n a dog treat bag attached to my bed as it takes me a longtime to get out of bed . I have alcohol and trash bags by my bed too. So I can stay sanitised. Thanks
Have you tried Muscle Milk powder. It’s with the body building supplies. Vanilla the best but love the nut flavor. Make smoothly add muscle milk n peanut butter powder n chocolate muscle milk n taste like peanut butter cups. I put frozen bananas n a handful of ice. Try that n you can add beneifiber to bulk it up. Let me know if you think that might put some weight on you you can freeze n ray like ice cream yum I add plain yogurt too. Lots of great stuff.
Hi Maggie, I have following CZcams channel, is you ostomy permanent or temporary.. I have similar experience, I was diagnosed with crohns disease and coilits since 2005 I was an alot of medication start eventually got it under control everything was good.. 1st May 2021 I got bad flare up crohns disease and coilits, I was rushed to hospital had emergency surgery surgeron removed 16 inches of small bowel, 6 fistula and abcess hitting off spine bone and close to sepitis.. I had temporary stoma 12 months. 20th May 2022 I got my bowel reversed..thank god no problem since.. keep up good work Maggie you are helping alot of people who have ostomy temporary or permanent..
Thanks for the great info! I’m getting an iliostomy on Monday and I’m getting nervous. I had one about a decade ago but it was reversed. Now I have inflammation again in my rectum and I just want it out. I even developed a recto vaginal fistula. My surgeon is removing my rectum and will repair the vaginal wall and hopefully all goes well! I’m just ready to feel better and spend a lot less time on the toilet!
Carolyn, I wish you all the best.
@@thewisepowerchair2369 Thanks!
I’m 7 days post off. Last evening had a leak at wafer. Today had leak on bag after going to doctor to have staples n bridge removed. I watched the Singapore Hospital video. It said to stay in same position for 10-15 minutes after putting on a new bag. I have been changing bag sitting on toilet. What is your advice about being still for that long? I have never changed bag while laying down .
I use a barrier ring and barrier strips. Stoma powder, skin barrier wipes.I like coloplast deodorant lubricant it a great lubricant but m9 seems to be better with odor.And I can't live without osto ez vents for my ballooning issues!! ❤
I have a urostomy (basically like a colostomy but for urine) would deodorizer help with the smell or am i stuck with it since i would yhink since its fluid it would just flush out the deodorizer when i empty my bag?
may i ask what to wear when swimming
Would you feel up to the challenge of cross using ostomy supplies for waterproofing central lines? I know theres a cross over way to solve the problem, but dont know ostomy stuff well enough to figure it out on my own.
Thank You. You should teach some nurses some of your tricks. I lost about 60 pounds gained about 10-15 back it varies every day. I have - new pair of stretchy pants and 3 daises of shorts. Wore the pants maybe twice in a year I use the donut on a little deeper barrier with a clip on high volume pouch. I would like to get a pouch bag that goes completely around me Any suggestions or place to get a good cheap one lol. I use mostly Coloplast stuff from comfort medical now I was getting stuff from Byram they were just bad Comfort is starting to get that way. The nurses I had only agreed with you on wiping with water. In the hospital they didn’t use adhesive removal spray or wipes an I also had an open wound with a suction pump. I had them give me morphine when they changed everything at once an I could have used a higher dosage. Thanks again
AN ART? YOU NEED AN ENGINEERING DEGREE! 😂
Do different brands of product work better/worse than others for their intended use at different stages of having an ostomy?
I have been thinking that when I get my Ileostomy it would be easier for me to empty into a urinal and rinse the urinal out. I say this because spacing my legs on the toilet would be difficult for me.
Hi Maggie. What causes the bag to blow up with air New bag 2 days ago an today it was almost completely filled with air. Thanks Michael
What do you call the packs which help to increase the consistency of the stool? Does insurance cover this? Which company has the best product?
They are called gelling sachets! I personally like ConvaTec’s Diamonds (full transparency- I am sponsored by them) but have been using them for many years and find them to be the easiest to place in the bag and the most gelling! As for insurance - it depends on your insurance!
I don't have IBD, but I still find your content interesting. If you haven't done a video about this yet, what foods did you need to stop eating after getting a stoma?
It depends on the person. I have to be careful with corn, but I can eat everything the same. But some people have different things they have to stop eating
I've had my ostomy since 11/20. The one thing I can't get used to is stoma powder. I can never get it on the areas that need it. Squeezing the bottle just gets it everywhere. I wish there was a video showing how to use it. You didn't mention barrier strips, the ones used for when the bag starts to peel but you can't change it right away.
I actually thought about adding the barrier strips to my skip list! I use to add them when I had the peeling, but noticed it was better to change the whole appliance as I'd get irritation under the strips. I can definitely do a how-to for stoma powder!
Im completely new to this less than 3 weeks, whats the difference between the ring and the flange
I have had my Ostomy 47 years, I use most everything you recommended. A lot of trial and error! I noticed in your last video you used a product that you put in your bag that helped with a more liquid output. What was that product? The United Ostomy Association has a lot of information too.
Those were the Convatec Diamond Gelling Sachets! They are fabulous!
I use that all the time. You would think the nurses in the hospital would use that
☀️
No one covers skin barrier for my diabetes supplies
5 days 😮. I can go just about 3 days but mines quite tricky
Could you please let us know a rough cost monthly as moving from UK to states and I have an ileostomy
With my old insurance, it was about $100 a month for what i had to pay (awaiting what my new insurance will have me pay). When I paid out of pocket, it could be as high as $400 a month depending on how much I used!
@@LetsTalkIBD april 2023 ileostomy live in Canada i have no insurrance and its at least 450 a month can be more. its totally crazy!!
I use the spray an the bag the barrier an donut all falls off at once
I had my final operation for this condition 20 years ago in France. I have since moved back to the US and can’t find an ostomy nurse. Yes they work in every hospital but if I try to make an appointment I am told I have to see the surgeon who will order an ostomy nurse. As the years have worn on I have more problems with leaks but can’t find anyone to help me. Thanks but please help.
Hi there!! UOAA just announced a virtual clinic of WOCNs that might be helpful! www.ostomy.org/clinic/
@@LetsTalkIBDThanks so much!
Where are the links
If you're on a phone watching this, you should see a little "more" button under the video. If you click that, it should open the description where I have all the links!
maggie, are you still affiliated with stomacloak? your code doesnt work
At this moment I don't have anything active with them! I apologize- I didn't realize they made the code invalid!
Why am I nauseous alot
Maybe dehydration
Is your weight still 3 digits?