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The Skin Around My Stoma Was So Painful! | Preventing Skin Breakdown | Let's Talk IBD

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★Thank you to Ostoform for sponsoring this video! If you are interested in getting a free sample, click here: bit.ly/ostofor...
In this video, I share ways to help prevent skin breakdown around your stoma. Skin irritation can be so painful with an ostomy, making it difficult to move and go about your day. You shouldn't have to deal with it, so let's talk about it!
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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. ♥ #Ostoform #Ostomy #ChronicIllness

Опубликовано:

25 авг 2024

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Комментарии : 70

@LetsTalkIBD Год назад

Thank you to Ostoform for sponsoring this video! If you are interested in getting a free sample, click here: bit.ly/ostoform-seal

@Puglover130 Год назад

Maggie! I clicked literally everywhere and I don’t see a spot for a sample. I would be their perfect customer: permanent ostomy that leaks, unlimited insurance, retracted stoma! Should I just hit contact us and e-beg?

@jahnadavis7001 Год назад

Hello Maggie, do you have an idea of how long their ship times are? Thank you for all the amazing content!

@christinebarnes602 Год назад

The website says to contact one of several companies to request a free sample however one of the companies they list is edgepark . Edgepark informed me you have to be a client with them first. I actually am a client I told them then I was informed that they have the product but offer no samples.😢 I'm so raw and irritated Nothing I try seems to work . I'm on my 3rd bag today and insurance only covers 20 bags a month smh.

@rebeccaschifley5914 Год назад

Thank you for this....I just ordered samples of ostoform. I had seen them before but at that time they were only available in the UK. So when I came across this video, I was like oh yes, they must be available in the US now. I went to the link you provided, ordered some free samples and within an hour received a call from ostoform confirming my order, make sure I requested the right sizes and provided so much help and assistance. Such a pleasure to work with. So my samples should be here next week and I'm so excited to give them a try.

@cynthiaakacyndsmith6539 Год назад

I pre-warm, my flanges under my thigh…. Kind of sit on it… that warms it so I can apply it easily. Having had my ostomy due to cancer, and many years out there are some great ideas out there I am glad you are sharing them.

@LetsTalkIBD Год назад

That is a great tip! I've heard some will put it under their arm too to help warm it up!

@elliegoldie6140 Год назад

I do ileostomy changing sitting on bed and sit on my bag keep it warm.l have sore skin if output gets under flange.Dr gave me tubes Cavilon and it’s really good.Tiny amount works best.xx

@dna2405 Год назад

Do you use the adapt or any kind of glue? I going through my first real skin irritation and it sucks. I’m gonna use the glue on my broken skin but please let me know if that’s not a good idea.

@fawnslattery8588 Год назад

After 2 years, my husband developed a nasty allergy to barrier wipes and sprays. His skin went from normal to having excoriation that is similar to a chemical burn. We tried the blue 3M skin glue (at $15 a pop 🫤) and it made it worse! In desperation, I talked to an old school supply guy and he told me to try Torbot ostomy glue. The old school kind. Wow. It is literally a lifesaver! I put a very thin layer of Flonase over the skin and allow to dry completely. Then I spread a thin layer of appliance glue over the area, avoiding the stoma. Allow to dry for 2 minutes and then apply the flange. He now had zero skin problems and his flange can last 5-7 days without peeling or issue. Oddly, the glue creates a barrier but allows air to flow under. Anyone who has issues with weeping, failure to stick or excoriated skin should try it. And it’s like $15-20 a bottle and lasts for months.

@claudettedean3893 11 месяцев назад

Torbot is GREAT,GREAT,GREAT. I would stay away from Safe'N Simple wipes of any kind. Read where all your products are sourced. Torbot is from Cranston RI. My home state. It's called SKIN TAC. I rotate my adhesive removers to prevent possible reactions. Also, only for colostomies, not ileostomies or urostomies. Training the time of stooling with irrigations the same time a couple of times a week or when you know you won't stool by not eating for a couple of hours or your routine. Pad yourself with old towels or paper towels and after a shower or good complete stoma care, leave the stoma open to air. Good time to relax and read a book.

@juliab.1414 Год назад

My father in law got his ostomy last week, I'm so glad I can help him with all the great advice you give 👍😍

@clewis3250 Год назад

I recently discovered your channel. I had my colostomy done in December 2022. This video was ABSOLUTELY what I need as I am experiencing skin breakdown and it is certainly uncomfortable. I’m still trying to cut to size to fit my stoma and at times not getting it quite right. It’s frustrating at times. However, this video is so helpful is preventing skin breakdown. I also ordered a sample of the Ostoform! Thank you so much and continue to make informative videos.😊

@susanlew1730 Год назад

Hi. I’ve been watching you for about a year. Thanks for the great videos. I’ve learned a lot from you. Just wanted to say that you look beautiful and healthy. Don’t know what you are doing but you look like you feel much better. Take care.

@ayanagraves5251 Год назад

OMG Maggie this video will hopefully be a game changer for me because for the past couple of months my stoma has been retracting more at the bottom. Therefore, been having painful skin breakdown there. I called my ostomy supply company, Byram, after I ordered my free sample to see if they carry it. They not only carry it, but it will be covered by my insurance. #winning

@michellelepper673 Год назад

We clean with unstented soap and unstented baby wipes. Now the skin very normal and healthy

@dna2405 Год назад

I’m in tears. I had to leave work bc leaking. But I’ve been having this irritation on my skin after 3-4 months. Thank you! Gonna order in a minute. Thanks so much

@dna2405 Год назад

It just started happening last week. And it’s getting worse. I’m laying here for over 30 minutes y’all. With a+d diaper rash cream. I haven’t ate or drank in a few hours. It sucks. I’m sharing bc I know others have this happening. 42 male just saying. Love you all! Ty!

@michaelj2276 Год назад

Thank you so much for this, Maggie. My surgery is on June 26th and there's so much information out there, it's overwhelming. Your channel has been a *Godsend*. 🥰

@chrisrogers1685 Год назад

Been through the same thing. It was terrible. Never again

@LetsTalkIBD Год назад

It's awful!!

@cindylouwhosthriftedtreasu5341 Год назад

Thank you so much for this information! I am experiencing so pretty bad skin breakdown myself and have tried all that worked in the past without the usual results. I have ordered my free sample and hopefully it will arrive soon!

@deborahsmyth8835 Год назад

This is exactly what I need my stoma is almost completely flush.....can't wait for the sample

@LetsTalkIBD Год назад

Oh I bet this would be amazing for you!!

@susanlew1730 Год назад

Mine is the same and I leak constantly. I really hope it helps!

@deniciarodriguez2754 Год назад

I love your advise it is so helpful

@808lublabs4 Год назад

Interesting topic. I had skin issues around my stoma. Really bad breakdown and it wasn’t until I saw a dermatologist who was familiar with stomas that I was able to get some relief. If anyone is having chronic skin issues around the stoma, seek out a dermatologist.

@dna2405 Год назад

Thank you so much! It makes sense!!! Love you all! It’s hard mentally y’all! Bless u all!!

@vickikroll9570 5 месяцев назад

Great info and needed. Will get the sample.

@bettylee2004 Год назад

Hi Maggie great advice 👍 you can even put your flange on the side of your underwear, between skin and underwear if you can understand what I'm saying but that also heats it up too before you put it on.

@jeanmank6342 Месяц назад

Gosh, these look wonderful. I'm going through a horrible time with my skin, but this product is far too expensive for my blood. However, my husband is an engineer, and it has given him some ideas of how to rig something similar up for pennies.

@kikiann2268 Год назад

Thank you Maggie. I just ordered my sample.

@LetsTalkIBD Год назад

I hope you enjoy them as much as I did!!

@robertwray6004 Год назад

Having dealt with leaks and a consequent breakout on my skin around the stoma--a vicious cycle!--I treated it with silver nitrate which healed it up quickly. Also, protective sealants (like Ostoform and others made by Hollister, etc.) are and should be considered a necessity to prevent leakage. They make all the difference!

@dna2405 Год назад

My wife just told me we have this from my other surgery.

@dna2405 Год назад

How do you put it on while using the adhesive with the bag? I use a 2 piece. Just trying to heal bc it hurts. Thank you

@robertwray6004 Год назад

@dna2405 Hi. Do you mean how to apply the silver nitrate? If so, it was applied in between bag changes. I let it do its thing for about 20 minutes before attaching my new bag. Also what has worked is covering the wounded area around the stoma with stoma powder. Let the powder stay on under new bag. Adhesive should still work. At least mine did. (I use Hollister for what it's worth.) Hope you heal up asap! It sucks I know.

@dna2405 Год назад

@@robertwray6004 thank you very much! That’s what I was able to do, let it sit until I put my new one on. I use Hollister as well, I ordered the powder last night. I really appreciate your feedback, it makes it a little better to be able to talk to other people that are living with this. Thank you

@OstomyLifeUnfiltered 6 месяцев назад

This is what I need!!! Thank you for sharing! I'm gonna request a free sample!

@michellelepper673 Год назад

Was red shiney plaid pattern this is what mom had to deal with.

@sakaimae Год назад

This video will be helpful for so many people! Not relevant to me but I always enjoy watching your videos anyway :D have a great weekend

@user-mx3bj6pu3f 6 месяцев назад

I want to thank you for the information. I just ordered some samples from this company. I am currently using Hollister stuff. It's ok, then it isn't. By having this illness for over 5 years now. I've messed up all my clothes. And lost my ex. She couldn't stand my change, and things changed dramatically. Now, I'm homeless with trying to deal with an illostomy. Thank God, I'm strong and not willing to give up. Plus, I have doctors just are pulling for me. So❤️try to imagine trying to find a place to remove, clean and attach new, without a bathroom or any privacy. I didn't think I could pull this off, but I'm doing it. Thanks for the video, and heads up on new products. I have to live with this forever. My ex thought it was gross, but then it shows me how shallow of a person she was. I've been with others in the bedroom, and I kindly explain my situation...and they all have been cool with my situation. Everything else works fine. I just got this bag, and belt. Oh well. Again thanks for your help. I'm glad I found you on RU-vid. - all the best to you. -Sandy ( I'm a guy w/girls name)

@jamierichard8631 8 месяцев назад

Thank you for the information. I have had mine for a few years now and am still trying to figure it all out. I have had very little help in this area.

@kerribirdsall2311 Год назад

Woohoo! I’m so happy about this product! The bottom of my stoma is pretty flush with my skin and next to an in pouching so I essentially have a bowl where my output collects. I’m using other products to better manage it but I could still use help. I hope my very sensitive skin tolerates it. Also, I use water wipes to clean around my stoma and to remove adhesive remover (non-oily kind). Wipes tend to be cold and warming them up after removing them from the package for a few seconds in the microwave helps. A baby wipe warmer would probably help too. I haven’t invested in one yet.

@cmabe2001 Год назад

I too still miss cut my wafer after 6 years. Oh Maggie get outta bed and empty you bag, and if 1 time is all, your lucky, me 2 times minimum I sure wish Squa would not be such a night olw mostly quiet during the day.

@rockyusa2012 Год назад

Feel better

@ASMREUPHORICSTIMULATION 7 месяцев назад

Your videos have been beneficial, I have been caring for my mom and changing her stoma site since her surgery. She does not have a stoma that really sticks out. She also does not have a stoma with an exit point in the middle. it's located more to the right and oval-shaped, so I am not sure if this flow device will work as well with an odd-shaped less protruding stoma. She has irritation and it's mostly on the side that she sleeps on also the side where the stoma exit faces. I am using rings and power and cleaning and site changing every other day trying to clear up the irritation. I have seen some people apply the rings to the flanged before applying the flange to get a better seal, this is something I might try.

@phil7156 Год назад

I agree with everything, however I remove my bag an shower. Makes cleanup super easy. And I’m also really active so I use diamonds by convatec. It jells up so gives a little added protection.

@wandadavis2468 Год назад

Such helpful information

@dna2405 Год назад

Yes the heat is a great thing!!

@jennifercolby3496 5 месяцев назад

How do you use these with a 1-piece pouch?

@Stagbones Год назад

Me: wondering why this sounds sponsored Video halfway through: sponsored 😂😂 not a bad thing! Just funny 🤣

@user-gy6jc6fd4r 11 месяцев назад

Having so much mucus. Causing flange to leak help

@knight6757 Год назад

Thank you for the video..I m suffering from skin break down the most...simply the stoma first, it has been placed to close to the tummy skin and the outlet facing upwards thus defying the law of gravity..l am using colopast two system being a base plate and a stoma bag..which can be used for 5days..I hve come to a stage now l hve to replace it daily...though l use all the products of coloplast, like glue,glue Remover spray, barrier spray, comfy cream, Ostomy Powder coloplast ...l even use the coloplast protective sheet which too is a pain to cut into size to attach around the stoma.....nothing seems to be working now....dont know what to do..😢 by the way l live in Dar es salaam city, Tanzania, got the stoma out after the jpouch failed plus after the reversal way back in September 2017...the anal canal was thinned maybe m by staples and had strictures another worse thing to have especially with no colon the outlet is almost all watery, l got the stoma surgery done in India just six months ago..ie its now out again snd am still in terrible pain around the tummy and the abdomen..plus mucus emission too is tough thus causing pain to the rest of the smsll intestine and the jpouch left inside me😢

@trishameloling2367 11 месяцев назад

This has not helped me waste of time an money . Still looking what I can do

@LetsTalkIBD 11 месяцев назад

Not everything will work for everyone.

@dna2405 Год назад

Do y’all still use the glue adapt or paste on the irritated area? Thank y’all so much

@user-gy6jc6fd4r 11 месяцев назад

Which is better barrier rings or paste

@natashaw401 Год назад

Wow ur hair n makeup fancy

@Helloblossom1 Год назад

I have the my nurse said i have to poo holes their under and top of my stoma but i got sick viruses and the flu this week 4 days could not get out of bed and left my bag on 4 days never had done that before im new to this its been only 9 weeks after surgery I stopped using the sealer so i dont cover it all up I just use the bag only it s a little itchy no bleeding but looks ouch i normally change my bag every night before bed my nurse said i should try to keep the same bag for 2 days i feel yuk will it heal ❤

@hondawvrider Год назад

I have had mine for about 2 years now. Like an idiot I totally forgot about them telling me not to shave around it with a razor. That was the beginning of my skin problems. So itchy haha. I’m not sure I could use the ostoform because my stoma is flush with my belly. I actually have to use inwards curved flange. Plus I use a one piece hollister. I tried the two piece but had more leaks. Holy wall of text I have no one to talk to about this.

@dawnporter1803 Год назад

What if the stoma doesn't stick out?

@dna2405 Год назад

Y’all, I’m having irritation on the bottom and right side of my stoma. How do y’all put anything on it, and still put the bag on? Should I still use the glue?? Please help me y’all. Love you all!

@mariakaranikolas2755 11 месяцев назад

The website is wrong.

@LetsTalkIBD 11 месяцев назад

The website seemed to open fine for me!

@natashaw401 Год назад

Lolll melting flange

@rosemarybaranowsky6746 Год назад

Thank you for this Maggie. Just on another topic, do you still have rectal discharge? I still do after 5 years of having had my rectum removed and a colostomy. Just wondered how you cope with it and if it's normal?

@LetsTalkIBD Год назад

Thankfully no - I did when I still had a hole but because I had a full removal (meaning there is nothing there at all, no hole, no anal canal, no rectum) I don't have discharge. I did though prior to surgery and is the main reason I opted for the surgery. All I could do was sit on the toilet and try to expel as much of it as I could! It is normal however, as your body will continue to produce mucus even with the tiniest amount left.