Ostomy Odor, Leaks, & Skin Irritation... This is What Helps Me! |

[@LetsTalkIBD]

Thank you to StomaCloak for sponsoring this video and for saving my heating pad! Check them out here: stomacloak.com/shop

[@fruitsfinds8511]

I wish I had this video when I had my emergency surgery stoma. The lack of education for caring for this was shocking. Thank you for being so open and helpful!

[@pattymullin8515]

I just want to comment on how fantastic your videos are. It is very caring and honorable of you to make these videos and in the comfortable and natural way that you do so. I am sure people are very grateful for all of your knowledge and personal tips that you share, many of which can only be learned through experience. Something I love is you naming your stoma! That is hysterical and awesome! I have seen others naming their stomas - I absolutely LOVE it! To me, it signifies acceptance, caring and being comfortable with, well, Leroy, and all of the other little Stomies out there. You are all brave people and I admire each and every one of you. Peace out and love to you and Leroy ❤

[@LetsTalkIBD]

Thank you!! My Best friend actually named him :) My first day back to school after surgery she had pulled me into the bathroom because she wanted to see it. As soon as she did she declared that it had to be named, and she named it Leroy. It has stuck for quite a while now!

[@AngelaMartin-w2h]

I just want to thank you for posting. I just found out I have to get a colostomy bag due to cancer. I have been absolutely devastated. Your channel has helped so much. Thank you.😊

[@joneesobers1383]

I just found out the same thing, so I am glad she have this channel I'm learning, and praying for all who is going through this.

[@J.G.817]

Sorry to hear this, don't worry yourself too much you may get sicker.I"ve had my urostomy now for 2 years ,do to bladder cancer,it is a big change in life,but look at it this way, it will save your life,you can't live without it. God Bless.

[@mimmie-qj2ti]

Maggie, when I get leaks it’s usually from under my flange. My stoma is pretty flush to my stomach and my leaks are from my stoma to the left side of my flange. Under my flange. I had leaks on Saturday,Sunday,and Monday. Today it’s been better. It’s frustrating at times. Thank you for all that you’re doing for ostomates!!😊

[@starchick5815]

Maggie, this is super helpful information. I have a temporary ostomy after my colon resection. The reversal is delayed until May as I developed a pulmonary embolism 🤦🏻‍♀️. I’ve had a couple of back to back leaks this week. While I don’t wish a leak on anyone, it is heartening to know that someone with your knowledge & experience has them sometimes too. I am definitely getting a couple of StomaCloaks. Wonderful recommendation

[@pippy26]

Maggie, thank you for your tips, honesty and for giving me confidence with my new ileostomy, I have had leaks and extremely irritated skin, I am 4 weeks post surgery and became very depressed, thankfully to you and my ostomy nurse and a change of bag and application my skin is healing, although when a changed the bag tonight the skin around the stone has a purple hue so I will call my stoma nurse tomorrow. You truly are a beautiful person.

[@leslieo1514]

My father had his surgery this past week and it has been such a journey. I’ve watched a couple of your videos and they have been super helpful. So thank you!!

[@teresewecker]

I've read everybody's comments here. You all sound so stable and optimistic.. and Maggie is charming.. I hate to sound like a psycho. But I had an ostomy and I was a hot mess for 3 months that I had it. I think I wore Hollister. I tried a lot of bags. And could never get them to adhere for more than 4 hours.. my ostomy nurse and I tried everything .. even the doctor tried to change my bag, no matter who changed them they all leaked.. I had Diverticulitis and didn't even know it, which bore a hole in my colon.. anyway, I developed an eating disorder.. I'm no stranger to eating disorders.. but it had been years since I had an eating disorder and I thought i kicked the problem.. I finally had my ostomy reversed.. and to be honest, that was one of the best days of my life.. I'm sorry you people have to wear an ostomy bag, you seem to do it with more grace than I did.. God bless!!!

[@trishpugelli5371]

Hi, this is a WAY off topic question, but my neighbor who also has an ostomy has products ie: bag, lube and all the other things needed, delivered to her home by a medical company. She has since moved to London and a delivery came and I called the carrier to say come pick it up to return back to company because she no longer lives there. They said just toss it. I hate to do so if there is someplace or person that may need it. Would you know if there are places like this? everything is sealed in its orig. packaging and sterile. I have tried convalescent homes but they said they could not take them...Just trying to help someone who may benefit from them

[@LetsTalkIBD]

Absolutely! Kindred Box and Friends of Ostomates Worldwide both take donations! www.kindredbox.org/ www.fowusa.org/

[@jamesdunn8893]

​@@LetsTalkIBD I committed on the holster pee bags I'm going to switch companies how can I do that?

[@karencull9518]

Good question. My neighbor gave me supplies that I can't use and can't find anyone or place who could and or would take them, and hate to toss them. What do we do with them?

[@LetsTalkIBD]

You'll have to contact your supplier!

[@LetsTalkIBD]

See my response above! :)

[@chrissy24-7]

I had no idea that ibd could get so bad and what was involved with this. Thank you for covering this and that stoma bag really sounds wonderful ❤

[@pixie706]

As a non stoma person I think you are amazing. One question i have is how does the weight of output affect your skin and does the weight get uncomfortable.

[@AndiSchneider]

I’ve been battling gastroparesis, short gut, and EoE. I’m currently on TPN, but still have my g/j tube. I had to have an ostomy because of a fistula, and I didn’t even have a lot of output because it was caused by a fistula at an old feeding tube site that we thought had healed.I like your videos because you are showing life isn’t over because of an ileostomy. I’ve told my surgeons I would never consent to one because who is going to want the 38 yr old with a 💩 bag. Just had another big, open surgery at the end of November to move an old tube site, close up the old one, and I guess they spent hours scraping and removing scar tissue and adhesions. I think I lost a bit more bowel. I know we are getting closer to having to discuss doing the surgery, you’d think I’d be more upset about the fact they started talking about transplant coordinators. Your videos are helping me come to terms with what most likely is in my future. I already deal with a very angry stoma site, and even the wound care team can’t keep it in check. Even on TPN I still get hungry for some things, usually I can take a few bites and vent so I won’t get sick, but there’s also the issue of it coming out the stoma site before I can even vent, it’s like throwing up from my stoma. Again, I love your videos and how open and honest you are about everything you’ve been through. All of this can be so hard and so overwhelming.

[@DeborahPeppard]

I’m so sorry you’re going through this.

[@jessicahayes5670]

Hi Maggie! I was looking up urostomy & ran in2 ur channel. I have been using urostomy bags 4 almost 5 yrs. I get rashes very easily. I leak quite frequently. I already love ur channel.

[@LetsTalkIBD]

Thank you so much!!

[@wildehorse2803]

Love you and your positivity. You’re very strong and inspirational. God bless you! ❤❤❤

[@annlitwack5623]

Thank you so much for sharing this videos about your stoma and ostomy I have one too and really appreciate the tips. i am going to see if they have a stoma cloak for my one piece bag.

[@teacherlynn671]

I know this is your path and you are happy and you have a great life with a wonderful husband. But I just feel for you so much. I wish things were different. I am glad for you. Thank you.

[@DeBorahPalmerUnicorn]

❤❤❤. I've learned so much from you. Your videos are an excellent source of information and encouragement.😊😊

[@maryreynolds5310]

Maggie, do you use a convex wafer? I thought I mentioned this to you a few yrs ago, but since I changed to the convex, girl no more leaked! A lot of people think their stomas stick out enough they don’t need one. Little do they know our stomas can shrink down to belly level. Since going convex, I’ve never had a problem! Ya, I just noticed you use flat wafer…put the paste around your stoma wait a minute, then stick that wafer on….you won’t have leaks. I’ve not leaked in several years, and my stoma is busy I use the high output at night.

[@LetsTalkIBD]

I don't! I actually noticed that even a thick barrier ring will put too much pressure around my stoma and my skin turns purple. I get only the slim barrier rings now because you can actually get pressure injuries from too much pressure. My stoma thankfully doesn't push inwards (knock on wood) and I don't experience many leaks from my flange! I have heard of many having a ton of success with convex - its fantastic!

[@Lovefufuland]

Thanks for your sharing. 見到你咁樣，諗反起以前個護士Patty都唔識得感恩&珍惜，其實已經有份好工人工高又唔洗點做，比起醫院裡面做好好多啦，都要咁害人，真心希望她需要面對到依d野。她真係對人好差！

[@karenshepler7128]

Hello, and thank you for sharing with us as fabulous idea they came out with. Take care 🙂

[@dyskover]

I fold one sheet of toilet paper and then fold it over the end of the bag before closing my velcro bag. It helps keep the tail cleaner for the next emptying.

[@maryloustaley8150]

When I change my pouch, I connect my pouch and flange together before putting it on. I use Hollister. I think it reduces the chance of leakage because I'm sure I get it connected firmly. I have had a pouch last from 5 to 8 days!

[@deborahshore-robinson5800]

I have a good few ileostomy covers. One of them is a black cover that says SHIT HAPPENS LOL.

[@davidboston8839]

I was shot last year and had to wear one for six months, so i relate to the experience

[@robinsmanatee]

This is an awesome device! I'll definitely be sharing this video with patients that may not know about it! Thank you!

[@Rose-z4v6r]

I'm so glad you have a great partner or husband who is understanding. My ex boyfriend who is now my roommate his surgery caused him to lose his manhood. He's not a happy person. But I'm very proud of you young Lady gby

[@Lala-vx4os]

Leroy! I love that. Mine is "Phoenix" :)

[@paulalutz6645]

Mine is Hector the dexcom is Dextor

[@batlady2343]

May I introduce "Vesuvius?" He can really spew sometimes!

[@Lala-vx4os]

@batlady2343 now that is clever!

[@paulgorfine9807]

Maggie your post area godsend! My wife went in for back surgery and came out with an ileostomy. Having 2 near death experiences and recovery from 2 very difficult and invasive surgeries has been challenging both mentally and physically. I watch your videos with great regularity and have learned with each one. Perhaps I have not exhausted the complete body of your work, but I have yet to see any comment on sleeping with a bag. Currently my wife sets an alarm twice nightly so it can be emptied. It is exhausting and she is chronicly fatigued. Do you have any thoughts or insights? Perhaps addressing a video to this topic would be helpful to this community.

[@LetsTalkIBD]

Hi there! Here is a video I did a few years ago on sleeping with an ostomy! kzbin.info/www/bejne/mXyZqaelaLygq68

[@hasnaomar8217]

الله اشافيك أختي وعافيك❤❤❤❤❤

[@mattcharles1505]

I think you are such an amazing person and I admire your candour.

[@nikkipennington9617]

I love your channel. I just discovered it a couple days ago. You are awesome!

[@kagomegrrl21]

Question. does it every hurt when you have to remove it so much. and also are you ever self conscious about your scars?

[@MichaelGibson5047]

My wife has an iliostomy and a mucas fistula.we use Hollister some times things work other times wafer busts in a few hours.

[@izzykaii]

I looove this sweater on you ! 💜

[@maryreynolds5310]

I tell people when I go to the hospital where I volunteer so many ways to help with certain situations, I’m amazed at the amount of stubborn people who say and assume…oh no, I know that won’t work. lol Just try I say 😊 P.S. Those covers are fantastic, glad you are sharing 😊

[@laurakinsella8233]

Question the scar on your stomach?

[@Kellycrazy77]

I wear a 2 piece system but I’m trying convatec samples now loving the moldable flange and the no sting wipes for cleaning . 😅

[@quiltea56]

Thank you so much Maggie, I am going to order some .I have been needing something like this. I just have to figure out what size. I always learn so much from you.

[@mariakaranikolas2755]

i have been watching you since i got my stoma. i was one of these people who did not want a stoma, i fought it for 10 years.. Then in 2020 i final has no choice. it was the best thing i have done. You made it easy for me by talking about. You made me feel like i wasn't olone. i just bought the stoma cloak. I has some questions and i called them, spoke with a very nice man Frank. He asked where i found out about them i told him, you talked about it on you tube. He was so great. Once i got off the phone i order 2 of them... thank you so much for what you do .........Maria

[@LetsTalkIBD]

Frank is lovely!! I believe I met him at the UOAA conference over the summer :) I hope you love the StomaCloak and I hope you are doing fantastic!!

[@solging1412]

Hi thank u for sharing..it'a my 4th month now having colostomy..i have an on call nurse to change my bag every week. Since i follow ur videos i'm considering to change my bag by myself. I hope i can do it correctly..

[@anne-mariemcinnis9143]

Hi Maggie! Question for you: do you feel anything, when you need to "go" and do you ever have to push at all, for the contents of you bowel to empty?

[@LetsTalkIBD]

Unless my output is very thick or it is coming out rapidly, I really don't feel much! It comes out all on its own with the peristalsis of my intestine, no work from me needed! :)

[@sianmilne4879]

There are no muscles you can control in the small intestine, only the rectum! (Which Maggie doesn't have haha)

[@anne-mariemcinnis9143]

@@LetsTalkIBDI sure appreciate your response Maggie. Although I am completely foreign to the world of ostomies, I stumbled on one of your videos one day and find your content quite interesting. I love that you name and explain things (and show them), just the way they are. I am wondering if when you clean your ostomy bag and put it down for a moment, if it sometimes leaks.

[@DenisePeeks]

Mine is Wilbur. Was told it would be temporary. But here we are three years later.

[@amythomas1124]

Wished I had known about the stoma cloak when I had my colostomy in 2017 & 2018.

[@shirleymcneil4410]

Thank you for your vlogs. So informative.

[@janwilloughby1384]

Couple questions, or just some advise. I use to do water aerobics, but haven’t since my surgery. I saw my surgeon today and talked about reversing my surgery, he said with my age, (74) and the condition I was in when I came in hospital, that reversil would be extensive. The pain having it was worse then anything I’ve had, and he said I would probably have just as much pain reversing it. Anyway would the stomacloak work for swimming as well as or for. Where can I get them? I’ve also seen where there’s a belt to use for swimming. Do you know where I could find one? ❤

[@LetsTalkIBD]

I wouldn't wear the StomaCloak swimming but I think what you might be looking for is a StealthBelt! Here is their website! www.stealthbelt.com/

[@christopheriacovo8472]

Are you positive that your folding the bottom of the velcro bag up correctly. I'm not trying to insult your ability or knowledge. But... those bags absolutely do not leak worn properly and folded properly. Doesn't matter how watery the stool is. I have always had extremely thin output.!. I'm extremely active, shower with it unprotected/uncovered. Ect... I also sleep on my bag sometimes and have to empty at least every other hour or my output will burst the bag.... do you not like wearing the belts that come with the bags.?. How about tape or a flange extension (I use those swimming when I have them otherwise I use waterproof tape around the edges of my flange so the skin doesn't absorb moisture. I have other tips too

[@LetsTalkIBD]

Yes, I'm positive! Its happened with every brand ive tried. I love my nondrainables, it's just my preference! I don't like wearing belts - they irritate me. I actually saw a pressure injury in the hospital from one so that turned me off personally from them. I don't really need flange extenders, my flanges stick pretty well!

[@christopheriacovo8472]

@LetsTalkIBD not sure I'm familiar with what a pressure injury is? I certainly don't where my belt any tighter than my pants or any other belt for that matter. The belt just helps keep things secure when they're stool in the bag and I'm hanging upside down or sidways, running, swimming, or other vigorous activities. I also don't ever have issues with the edges of my flange coming up unless I'm doing some extreme activity or have prolonged exposure to water

[@sianmilne4879]

Are you familiar with her channel? Because she is an ex ostomy nurse and does reviews of all sorts of products... I think she knows how to use the bag 😂

[@wondertwin13]

Great for preventing those fungal infections I just so happen to get every Summer👏👍

[@J.G.817]

That's strange you mentioned fungus, I do have intensity to get fungi every summer,it is a pain in the as., my doctor prescribes a hell steroid but don't help much at all.

[@wondertwin13]

@@J.G.817 try using tinactin before as a preventative measure. And keep skin dry as much as possible. Talc free baby powder or corn starch sprinkled on the skin helps.

[@nihonusha]

Hy, love! I've been watching yout videos for quite a while now and even if I am not part of the stoma community, I want to tell you that I totally enjoy your peacefull and kind way of supporting such a sensitive transformation in one person's life! One quick question : does your stoma make any noise when there is output coming into it? And what happens when you have to pass gas? Sorry for these questions, I am not being rude or anything. I remember one very old lady, years ago, in the same hospital with my granny, she had a stoma bag and felt absolutely miserable because of all the noise that it made and she was so embaressed when there were visitors in the room... I always conforted her but still she couldn't get over that... Lots of love and hugs! You are such a blessing! ❤❤❤

[@LetsTalkIBD]

Yes! My stoma likes to make noise haha! Any gas goes into the bag as well! Many ostomy bags have filters with charcoal that are supposed to let any air out so you don't have to empty the whole thing!

[@queenofdramatech]

It is like a cute beanie for your stoma!

[@ronniecampbell33]

Ima new subscriber i just love your videos and im happy to be here with you and i pray you be okay and everything is alright💕💕💕🥰🥰🥰

[@mikekozlowski2911]

Hi Maggie. Where do you get the covers. I have a Coloplast high output click on. I’m still new so I have no control an I use the out put end to help hold it up

[@alphb58]

Hey Maggie! Have you ever tried Coloplast Sensura Mio flanges? They carry a line that has an extra feature that really helps with leakage - they lock - not just clip on. I've had great luck with these - never had the first leak between the flange & bag, and I've always had very watery out-put all along. myself.

[@LetsTalkIBD]

Yes, I'm allergic to them!

[@DeBorahPalmerUnicorn]

❤❤ Happy Valentines Day. ❤❤

[@debdown16]

Ordering Stoma Cloak now. Do you have a discount code

[@patrickmcdermott8349]

Hi Allie thanks for ur info and updates

[@crechcnr]

Im glad to know mthat im not the only one that names her stoma mine is Claud

[@NicolannCarter]

God bless you lady and ty for the info

[@madampolo]

Thank you for sharing your experience with your stoma.

[@Edgar-u8v9m]

I pray for everyone and everyone

[@marlenejones6266]

My stoma was named RUDI. I hade a temporary ostomy due to,rupture of my intestine. I too worried about odor. And man peeling a bag thats stuck makes my heart skip a beat. I sometimes wish i had kept my ostomy. I know that sounds odd. But I was so used to it

[@pinkmonkeybird2644]

StomaCloak didn’t work for me. It would not stay on no matter how I tried to position it, even though I’ve tried so many sizes. I’m really disappointed because others have praised it. I use a Coloplast mini one piece non-drainable product, so maybe it doesn’t work on short waisted like me. If you are in a potentially high impact environment, I do recommend a stoma guard - there are a few on the market. Mine saved my stoma from damage when my daughter’s horse head butted me in the stomach because she was impatient for her treats I had in my bag.

[@sandilacey9794]

My friend named here too Her’s are called Karl.She has had hers for 7 months😊😊😊

[@tammypatten5138]

I have a question about the drainable pouch. Is that a Hollister pouch and if so what are the numbers for it.

[@debbietelles2549]

Where do I get the stoma cloack

[@primavidal4494]

Its realy need the barrier strip to support the ostomy bag

[@ln5423]

Hollister is getting really bad. Always leaks now after a few days.

[@DeniseLong-k1n]

Hi you probably have tried them but have you used manuka honey washers before I find them great xx

[@LetsTalkIBD]

I haven't but love Manuka honey! If I have issues with my current ones not working anymore, I will look into those!

[@DeniseLong-k1n]

@@LetsTalkIBD they are fabulous their a small washer that you cut to your own size it goes around your stomach then you put your bag over the top it’s just full of manuka and it helps healing really fast hope this helps x

[@karihamalainen9622]

Leroy! Pleasure to meet You. Leroys PRONOMINE is ...what???

[@karihamalainen9622]

I hope my writings are mostly and usually read with great humor.

[@iqbaldullu264]

I have stomach. I live in India. I use o ring drainable combination. But there is no elimination of smell. What to do? No one shows the way.

[@bobalijon]

I thought this would be a video of current supplies and methods she's using to combat the mentioned issues. Sad that it was a whole advert about stoma cloak. I get that it funds her making more videos by advertising for her sponsors. They're expensive and insurance doesn't cover them. Not everyone can afford it or gets free merch for plugging theirproducts. Any other suggestions for those issues? I have that problem sometimes too. Ty for sharing though 😊

[@LetsTalkIBD]

I do have tons of videos on my channel talking about all of these issues if you're looking for other methods. I try to make videos geared towards a variety of patients, and not every video is going to work for everyone. I'm grateful StomaCloak is helping to support my channel as it does take quite a bit of work creating this content. Without partners like them, I wouldn't be able to be online as frequently with videos. Thank you for watching this!!

[@ghost105st]

That Happens to me. I get leaks when with my ileostomy bag

[@virginialee7979]

If leaking comes from under adhesion I do not understand how this would catch the leak...

[@LetsTalkIBD]

The edges hang over a bit from where my flange sits. If you've got a major leak, it won't help a ton with that but for the beginnings of one, it'll help make a barrier between your leak and your clothes. At least that's what I have found!

[@virginialee7979]

@@LetsTalkIBD anything that helps for me is a must have. Thank you for sharing.

[@theresahernandez2350]

How come you didn't mention this product before

[@LetsTalkIBD]

I have :) kzbin.info/www/bejne/Y4LFh4NnmqiXpJY

[@sandylestersaito]

What do you do if the bag gets poof a d you're wearing snug clothing g like spandex leggings?

[@Sherry-jx9hs]

This looks interesting I will check it out. Has anybody had any luck making deodorizer from home products liken essential oils. I like to put mineral oil in my pouch so things come out easily but it doesn't do much for odors. Thanks all :)

[@CWM030]

I am a side sleeper, I just wonder can ya'll side sleep with a bag on?

[@IDontKnow-pf6en]

i spot a cat! God Bless!

[@LetsTalkIBD]

Where?! Haha I think you might have seen one of our dogs! We have 4 of them!

[@-moharibsaratan6108]

❤❤❤

[@barrypleasant8789]

Hi maggie i enjoy watching your videos. Do y have leaks when y pee

[@sandraadams4940]

I dont have an ostomy but I have oder, leaks and skin irritation. I have an anal prolapse, chronic yeast infections, etc.

[@arockiaraj9083]

Hi I am Arokkiaraj from India next month I have illegal condut please explain I want work and I have no child still its possible please inform me because I like you're videos Gud Gud information please reply to me

[@malinnesse3876]

☀️🌼

[@cheryldodd-marko9787]

🕊🇺🇲💕

[@goodies-rl6fl]

🫡

[@Sandeephudda-h2u]

Tall me in hindi

[@Sagepeh]

你很偉大

[@holsen8269]

Great public service here. Let’s not forget all those folk out there that pass wind with nary a thought for those around them. You know who you are 🫣