You aren't complaining, you're reaching out as a cry for help with this very difficult issue. The more heads brought together, the better the problem can be solved 😉

Maggie are you on any stoma support groups on Facebook? People from the UK may be able to send you some salts bags to use until your skin settles. The groups I'm part of are so so supportive and have loads of ideas for sore skin ❤️

@staceyblock7240

3 жыл бұрын

I'm going to do that for my daughter right now.

I love that you are not afraid to show all your imperfections! This is what makes a woman beautiful! Such a breath of fresh air in a society of so much fakness! You are a great example and role model for all women but most importantly younger girls! ♥️ Could be autoimmune response triggered an alergy!

Hi Maggie, I was in the same boat as you a few years ago. I developed an allergy to the adhesive in the Hollister flange and tried different brands, to no avail. I also used the Nystatin powder you mentioned, which would heal the skin for a while but still couldn’t go more than 2 or 3 days at the most without having to change it. Then I finally discovered that Coloplast has a 10x10 cm barrier sheet that goes underneath the flange and the adhesive in it actually helps heal the skin and keep it that way, at least it works for me. Just wondering if you’ve tried it or even heard of it? Also, if you need to use cream, Coloplast has a cream called Sween Cream, which works well to relieve that sore, red, irritated skin and is made to not interfere with adhesives. Hope that helps some!

@peggyjoyner9214

3 жыл бұрын

Excellent advice! I’ve done exactly the same thing. The Sween cream helps. Coloplast does make a skin wipe that I use with the Coloplast Sensura Click pouch and flange. The Mio system just doesn’t work for me...I’ve tried it several times and always return to the Sensura. Less irritation and a longer wear time (up to 5 days).

@sharonthompson844

3 жыл бұрын

Thanks for that info. I have the same problem

@ventuswillorwont

3 жыл бұрын

The barrier sheets are great. My ostomy is only 5 weeks old but my skin closer to the edges of the flange got super red and bumpy after trying out a Convatec flange. The barrier sheets have been amazing at protecting my skin from the adhesive and by the time the Coloplast flange I tried was ready to be changed my skin was already so much better. The man I talked with at Coloplast has even recommended those sheets for other irritations and he has used them for things like when he got a couple of blisters on his heels from hiking and even a burn. I'm still brand new to all of this but its already been a great help. I haven't tried the Sween cream yet but it sound like its worth it to have some on hand.

Hey Maggie- if it would help, you could have the Salts bags sent to me or another viewer (who lives in Ireland or the UK) and then we can ship them on to you?

@staceyblock7240

3 жыл бұрын

Ellie, how could an American get bags sent to someone in the UK? Don't you all have to have a prescription for them? Or will Salts send them by patient request? My 18 year old daughter is having the same issues and has also heard about these bags and would like to try them \

It’s not just the allergic situation which is bad enough, it’s also about potential leakage and the embarrassment that comes with that. Companies should take ALL concerns about their products seriously because it affects people on a daily basis. Glad you have this and other venues may be able to help you and others.

Coloplast Brava Sheets. They come in different sizes. You could get a large one and see if that helps. I have super sensitive skin too. Coloplast also has flange extenders and silicone rings. Their skin barrier wipes also are very gentle.

One suggestion I have would be crusting over the weeping area and then barrier strips (I love the Coloplast ones) to help keep that edge down. It works well for me.

Love your video's, they have helped me a lot. 74 years old and 2 years with iliostomy. I am a retired nurse, and the last raw skin I had I painted with old fashioned Gentian Violet. Bit messy, but worked for me.

What about seeing if you can get a script for the compounded cream they give nursing moms for thrush, it's called APNO cream. It also is protective for the pain and rawness associated with the thrush and antifungal.

@lesliekunkel1841

3 жыл бұрын

Maggie , It’s a yeast infection that’s what mine looks like , exactly! I’m in Ohio and have gone to Cleveland Clinic they will give you a powder like solution that clears it up ASAP, I know it’s miserable! But this will clear you up ASAP, I promise. They do virtual visits still. Good luck girl!!!

I would try the Welland Brand with medical grade Manuka honey.

You have the sweetest husband , I’m so glad you have him to walk thru this life , I’m praying for you , I know it’s a struggle what you deal with , God knows your sorrow, He cares for you ..

Hi Maggie, general paediatrician from Argentina here. I have had some patients with colostomies and they most certainly would have some degree of skin irritation. Our surgeons usually recommend using Karaya Paste, and I see that it's a Hollister product, so maybe you have already tried it, but it usually works well in the sensitive skin of babies and children. Your channel is great and you give a lot of information, support and, mostly, encouragement to everyone who watches it. Love from Argentina!

@LetsTalkIBD

3 жыл бұрын

Interesting! I use the Karaya powder because it makes a sticky gel when the skin weeps, but haven't tried the paste! I will try that!

@laurabuche5191

3 жыл бұрын

@@LetsTalkIBD 🤗

@marcelagalone

3 жыл бұрын

@@laurabuche5191 que lindo ver gente de Argentina por aquí...aprendiendo y disfrutando con esta gran mujer ...besitos desde Cordoba

Hi Maggie, Sorry to hear you're having such a tough time. I use the Salts Confidence BE drainable pouches that you say you love. I've recently switched to the convex ones, so have some spare flat bags. For me they're pretty much the only pouch that works, both in terms of not irritating the skin and actually getting to stick to me in the first place! I'd love to post the spare Salts bags to you if you'd like them. (Obviously wouldn't be a permanent solution, but would hopefully give your skin time to heal). Thank you so much for your content, it's been so invaluable x

I use Coloplast as well, for the most part I have been very lucky with not very many skin irritants. I do use a glue type of adhesive on my flanges. So when I do need to use stoma powder and the pancake method, the adhesive that I use allows my flange to stick for about a week before I need to change it. The adhesive has been a miracle for me.

I experienced the same issue, and I'm still working on it. However, what I'm using now is the Safe n' Simple Skin Barrier Sheet. I use the 4"x4" size, and it goes between your skin and the wafer. It's similar to the barrier sheet you mentioned except that it's much thinner. I then put on a Hollister New Image Flextend wafer, which is the thin paper tape wafer (also 4"x4"). Since both of these are thin, even worn together they still conform to my skin and allow movement. Then you might want to add something like the Hollister barrier extender tape until the damp skin clears/dries up. So far, this has worked for me and I'm back to changing every three days. Hope this helps.

I don't understand why you don't have more subscribers. I don't have IBD or anything similar but love watching your content. All the best to you two!

Maggie, I am so sorry that you're dealing with such a stubborn problem. I sure hope that someone here has ideas that can help you. God bless you and keep you, and help you and Zak figure out solutions together.

No, that's a genuine concern and you need to voice it and get it out there, and ask questions. Ask and explain like this, Maggie. Don't feel bad that you have to. Sometimes voicing it is the only way the problem gets solved. (And get into a WOCN, too. In the meantime... I work in a doctors office. They really should be working WITH YOU to help you out on this one.)

Ok, this is gonna sound wierd but I would suggest "Corona". It's a thick healing salve (not like petroleum jelly). I think it originally was used with animals. My family has used it successfully for over 60 years for diaper rash, cuts, and anything swollen or itchy. It's available through Amazon .

Maggie, Another thought. You've probably already tried this...but I always use barrier strips on a wafer that doesn't have tape. Also, I use McKesson barrier film wipes, then stoma powder, then Cavilon barrier spray over the powder. Then I always use a barrier ring. I like the thinnest version of the Eakin ring. My second choice is the thinnest version of the Hollister/Adapt barrier ring with the Hollister 2 piece system with a cera plus barrier ring (without tape). Just a thought. Bob Larson.

@yorkiemom4498

3 жыл бұрын

That’s what works for me as well😊. I have pyoderma gangrenosum😔

Retired RN here. I've used maalox, but first pour into med cup and let the fluid seperate. Use the top layer of liquid and apply, let it dry prior to applying your base layer.

@LetsTalkIBD

3 жыл бұрын

I will try that!! Thank you!!

@ThisnThat54

3 жыл бұрын

I've found that I've GOT to be dry before I replace the bag. I can't get the flange wet with a shower - I change the bag at shower time. I use the hair dryer which is supposed to be a no-no but I have to dry my skin after the shower, and after the adhesive wipe. If I get it wet again I can never get that bag dry again. If there is any kind of pressure on the flange anywhere, it itches like crazy. After everything settles, then I'm okay. The elastic on my underwear can cause irritation if it's on the flange. I wonder how we do it sometimes. That itching is just insane! But you have helped me so much. I hope something helps you soon. That's so raw. Thank you so much for your story. I hope you get a drs help with supplies, that's just so wrong!

I am new to the ostomy world. I had an allergic reaction to the extenders and was starting to happen with the ostomy bag too, which is coloplast mio. I used Sudocrem (used mainly in the UK for nappy rash) and it calmed everything down. I can’t tolerate the extenders but I can now wear the coloplast bag. I wipe the Sudocrem on, allow it to cool the area and then gently wipe off. I then change my bag every two days to keep the skin happy.

I have an allergy to adhesives. Until I can get my ostomy reversed (only 50 lbs to go), I am LIVING on Benadryl. I use coloplast sensura mio too. My current system is: clean the area with soap and water. Let it air dry. Then I check for irritation. If I have any irritation, I use stomahesive powder, blow off the excess, use sureprep protective wipes. Let it dry. Repeat 1-2 more times depending on the severity of the irritation. Next, I use stomahesive paste around my stoma and around the irritated areas (a semi-thin to semi-thick layer). Next, I apply the Coloplast SKIN BARRIER 6"X 6" HYDROCOLLOID BRAVA PROTECTIVE SHEET. After that, I apply my sensura mio convex flip flange. Then, I use Safe N Simple Silicone Tape (SNS57232) around the edges of both the protective sheet and the flange. I LOVE this tape. It is even reusable (but not really 100% necessary - because I use the hydrocolloid protective sheet first, there is NO peeling up of the edges. The tape just gives me a little extra security for showers ). After that, I pop the bag itself on. I usually apply a heating pad for 10-15 minutes afterwards just because it feels good. I usually change my bag every other day (just so I can monitor the skin and let it breathe some), but I COULD go 4 days if I had to. I hope this helps somebody.

Hello! I also think it is a fungal infection. I know that it can also be eczema, allergy etc. on top of it, but my dermatologist said that it is highly possible to get fungal infection on irritated skin. And because it is so hard to treat effectively it can be a very long term problem. Of course ointments can help, but the most important is to do at lest 2 weeks therapy with oral anti fungal medications. I have experienced really bad skin issues due to this... cracking, bleeding, blisters... for me pills really helped. I’m sure it will be better in no time! It’s worth a shot! Hopefully it will get better for you in no time! Best wishes! Love your channel 😊

Yes mine breaks out just like that and I know what you are going through the only thing I found that gives me relief it to clean the area and apply the liquid new skin to the surrounding area before applying the bag

In the Type 1 Diabetes community it’s common for people with adhesive allergies to insulin pumps or continuous glucose monitors to use Flonase as a barrier. Just wait until the skin dries 100% before attaching the adhesive! I hope this helps!

@LetsTalkIBD

3 жыл бұрын

This is because of the steroid in Flonase! I wonder if the Flonase would absorb more so my bag would stick better than hydrocortisone cream! Thank you!

Maggie, I am so sorry you are going through this. I understand completely because I am going through something very similar. I am allergic to every type of adhesive and my abdomen looks just like yours. It is very uncomfortable. When it gets too uncomfortable I apply a thin coat of honey to help with healing. The coolness of the honey also helps soothe it also. I pray you find a solution and comfort soon.

Try possibly Nexcare waterproof bandages or tegederm clear dressing as a barrier. Or the Bandaid waterproof hydrocolloid dressing or Duoderm ultra thin dressing as a barrier under your wafer. Both are very thin but would protect your irritated skin.

yes i have allergies all the time, i have them the most with coloplast bags. I have a lot of ostomy supplies left like so much because over here in the netherlands we get everything from our insurance. I now have the eurotec bags and never allergies anymore.

Not wanting to sound creepy, weird or shallow, but I could just watch and hear her for hours... She's just so beautiful. Her husband is one lucky man.

Hi Maggie 💜 I have Crohn's disease and an ileostomy and I am finding that I am allergic or sensitive to everything! I constantly have rashes and itchiness/burning with various different bags. I recently have been using convatec duo derm hydrocolloid barriers so that I could use some ointment that my surgeon prescribed for pyoderma. I am having a hard time keeping a bag on for more than two days, especially after showering. I have been using barrier strips, but that is also giving me that allergic reaction circular rash... not to mention it gets gummy when it gets wet 🙄😅 I love watching your videos. You have helped me so much on my ostomy and Crohn's disease journey. You and Zak are a beautiful couple. I wish you the best! I hope you see my message 🤞🙏🥰 -Sarah

You amaze me. You are blessed with a terrific husband. When I did use an ostomy my skin was on fire!

Hey Maggie try Mylanta. Rub a thin layer over the skin and then put the bag on. It healed my skin right up.

I am allergic to adhesives and I also have many food allergies. My allergist told me that foods can cause the skin under the flange to flare up because the skin is comprised. So you might want to keep track of you food and drinks. I use the Convatec 401575 and the bag to go with it. It’s the only one I have been able to use fir 3 years.

Hi Maggie! I developed an allergic reaction to the Coloplast adhesive. To heal my skin I actually used Flonase..since it’s a steroid, it cleared up my skin in a couple of days & I put Hollister’s version of a barrier sheet in between my skin & the flange until it healed. My skin likes Hollister’s CeraPlus so that’s what I’ve been using ever since.

Holy crap, the Brava barrier spray is working great for me, I hope I never have this problem...Keep smiling, really enjoy your videos.

I don’t have a colostomy bag BUT when I use any plastic bandage my skin does the same thing! Red, weepy and itchy. Annoying ... you need coverage but the outcome is worse !

So sorry you are going through this. I hope that you are able to get a “supplier”from the UK to send Salts to you

That looks so painful! I’m so sorry you have to deal with that. It sounds incredibly frustrating.

I agree with some of the below. It looks like an adhesive allergy. I get that with Hollister

Lol Zack is so supportive. His facial expressions are everything 🤣

Hi Maggie, I used to have the same issues. I now use the Salts bags with Aloe and Pelican barrier wipes with Vitamin E. If you would like to try the bags, I can send you some all the way from the UK x

Maggie i also use Gentian Violet on my skin. Sometimes the skin is so excoriated and painful and itchy. I don’t know if the can get it there. But this is the cheapest and an effective solution. Sometimes the skin is damaged over about half of my skin under the cloth surrounds. Sometimes it’s also around the stoma itself. I put the gentian violet over the skin protective wipe.

So sorry you’re having to deal with this! 😔 I hope you’re able to get resolution soon. Love your channel. 💕

Hi Maggie, I have advised alot of patients to start taking dairy free probiotics. It's helped alot with their skin issues and helps the skin repair from the inside out.

Hi Maggie, i have excema and contact dermatitis. I prep by spraying Stomahesive powder around the entire area...from around the stoma out to beyond where the flange and tape edge will be. I pat off any excess powder. Then I dab the entire area with Stomahesive Skin Prep pads. I use 2 to do that whole area. Once dry I use a Coloplast skin barrier sheet. You can cut a hole for your stoma and apply it. I use the 6x6 inch but there is a bigger one. . Then I apply Stomahesive paste around the opening of my pouch and apply it as usual. I rarely have skin irritation since doing it this way. I hope this helps. Xx

Will your GI surgeon order your supplies for you? It’s inexcusable that your doctor won’t order this for you. I’d be looking for another doctor. I’m a retired nurse...

@peggyjoyner9214

3 жыл бұрын

I have had an ileostomy for 39 years (I’m also a retired RN) and insurance almost never covers stony supplies. Many insurance companies explicitly say in the policy that they are not covered. And you’re absolutely correct, it’s appalling. I use Coloplast supplies and figure it costs about $10 for each pouch change.

@fontressafoxx9743

3 жыл бұрын

@@peggyjoyner9214 yes it is mine used to cover mine but not anymore and they are expensive

@krystlem8920

3 жыл бұрын

@@peggyjoyner9214 my insurance covers 80% for my supplies. It's still expensive even then. It's rediculous

Maybe your preferred bag is available in Canada, in which case you could order from a pharmacy there instead of from the company directly. I have gotten very much more allergic as I got older. I use Zyrtec for hives and I am now allergic to almost all hand soap since the pandemic requires so much hand washing. Itchy palms which you have had too. Hives. Zyrtec helps.

Hi Maggie and Zak I really like your channel! Very informative

@manditrofatter6196

3 жыл бұрын

They are Amazing humans!

Fellow ostomate here. I also have very sensitive skin that hates adhesives & becomes weepy. A WOCN told me to try a poison ivy/oak/sumac soak that would act as an astringent to dry up the skin - specifically, a product called Domeboro - so I ordered it from Amazon (~$12 for 12 packets). It healed my skin better than anything else I'd tried, so I'm hoping it could help you too. Put 2 packets in a typical 16.9oz bottle of spring water; shake well, then soak paper towels in the (vinegary smelling) solution. Place the wet paper towels on the peristomal skin (but NOT directly on the stoma itself!) Let sit for 5 minutes, then remove the paper towels & pat dry (no residue). If you have Flonase, spray on the peristomal skin to help with some of the itching, then let dry. Save the remaining Domeboro solution in the bottle for the next bag change. It dries out the skin so the barrier spray & bag adhere better, which helps kickstart the healing process.

@yorkiemom4498

3 жыл бұрын

I have pyoderma gangrenosum and will try this method when I gat weepy wounds. Thank you!

Oh Maggie I am so sorry you are dealing with this. I too have issues with adhesive

So sorry you are going through this. My son had an ostomy when he was an infant. He had continual skin breakdown. After several months he was able to have his resection. Best of luck to you.

Girl. Find someone to flip ship for you. Basically find someone in a place they will ship your preferred bag and have them shipped there. That person then ships them to you.

I remember a friend using Irish Spring bar soap to clean the area. I’m sure you have tried everything but just thought it might help. Love you guys and your videos. 😊😊

Here in eternally locked down Ontario, dining in has been banned since summer 2020. Missing it. It was a nice little luxury. Happy to see that you're able to dine in!

@evaklaassen2807

3 жыл бұрын

the same in germany

Hi Maggie, I am so sorry this is happening to you, it looks so painful. I don't know if this will help you. My husband has an ostomy . He is not allergic to the adhesive but he would sometimes get very irritated skin. He uses coloplast supplies. He started using the Bravo protective sheet under the barrier that he would cut to the same size of the barrier. It helps his skin, stays on longer and absorbs sweat. I ordered free samples from coloplast when his nurse recommended these to him. I hope you get relief soon. Love your videos.

That's awful, I'm sorry you are having this problem.

I had same problem with sensitive skin. Ostomy nurse tried many products, finally I got desperate enough to try my Aloe vera plant gel. As it dries it itches and reddened but when dry sooths and heals and best of all the adhesive sticks, can also apply on edges between bag changes. Kills fungus and bacteria. Its been 3 yrs. No bad problems with fresh aloe vera gel. Hope this helps, thanks for all you do for the ostomy community.

@LetsTalkIBD

3 жыл бұрын

I will definitely try this! We got an aloe plant for Christmas so time to get some use out of it!

@Sue-pn7mq

3 жыл бұрын

@@LetsTalkIBD Make sure you don’t have a latex allergy before trying this as it might make the problem worse if you do. If you don’t have a latex allergy it might work to switch to latex containing adhesive instead of the latex free. I’m allergic to latex and apparently the adhesive, my stoma is brand new, so I’ve been told to contact my dermatologist for a solution. If he has one I’ll let you know.

Maggie, I have hollister and Convatec supplies I can ship to you for you to use in the interim until you can see a WOCN if you would like. I can ship them to your PO Box. Just let me know. Hollister item no.14705 and 18182 along with adapt rings 7805. Convatec 404593 & 411802 and 404016 along with eakin cohesive seals 839002. (I have switched pouching systems And am no longer using). I have pyoderma gangrenosum and get similar ulcers under my appliance from time to time but I don’t seem to have an allergy to my current supplies.😊

In my experience it’s because the bag is on to long, shouldn’t be kept on for days on end, you wouldn’t do it with wound dressing or plasters, the skin needs to breath & be washed daily or even twice a day in my case when there’s issues & like when it’s as inflamed as much as you appear on this vid, forget the potions & creams your just painting over the cracks tbh, give it a week with washing twice a day no rubbing or abrasive action just showering or warm/hot water, then go back to one or two days max otherwise your going to have it come back, just from my own experience only ever used a touch of stoma powder like a narrow ring around the stoma itself as a barrier between bowel, skin & bag then stick your bag on top, can’t say this enough if you have sensitive skin no creams just clean regularly until your able to wear your bag for 2 days max, hope it helps✌️ Oh & make sure you change it on an empty stomach because of the stomach acid getting involved/leaking.

@sharonthompson844

3 жыл бұрын

My sodomy nurse told me that the less often you change the bag the better because peeling bag off pulls at the skin making it so much more irritable

@marcosmagic1983

3 жыл бұрын

@@sharonthompson844 lol I’m guessing you meant Ostomy Nurse 😂 Honestly I’m now in my 11th year with my stoma, can only offer my experience, using the adhesive remover gently not heavily to take bag off then washing I have literally never had an issue from this, maybe because I clean it regularly perhaps, not sure as I said can only offer my experience.

Maggie I had the exact same issue. I have a latex allergy. My skin was pealing and swollen and red, it would bleed and the sores would weep and hurt so much-exactly like yours. I spent so much time putting lotion on and caking powder onto it. I was changing my bag everyday because it was peeling off, from blood. I went to the hospital to speak to the wounds unit several times because it was bleeding so badly. I tried everything, for over a year. It was suggested I stop using any skin barrier wipes/cream and my skin got much better, It was so painful before. I now use Coloplast Sensura Mio and knock on wood my skin has healed. I sometimes still get a bit of a red swollen mark from the outside of the flange but nothing like I had last year. I have tried Hollister also and used them without a barrier cream and they were much better for my skin. I'm so sorry you are going through this I know how painful it is.

There is a cream i use called MICONAZOLE NITRATE, its a BROAD SPECTRUM ANTIFUNGAL CREAM and i swear by it, all the very best Maggie

@LetsTalkIBD

3 жыл бұрын

Unfortunately have tried this too! Thank you!

I get contact dermatitis from the adhesives in wafers. I tried everything like you, but it wasn't until I started using a combination of antihistamines that I got real relief. I stick to the bag I react the least to and take Claritin in the morning and a benadryl at night. Before that I was completely miserable and couldn't get anything to stick to my weepy skin that felt like an angry ant hill.

@breckenberning

3 жыл бұрын

Many people who have auto-immune conditions also suffer with Mast Cell Activation Syndrome, me included! I was having reactions to many different things that came in contact with my skin (including band-aids)....plus multiple other symptoms, like head to toe hives, daily migraines, etc. We finally found out I had Mast Cell Activation Syndrome and I was prescribed a combination of antihistaimes and it has made a VERY significant improvement in so many of the symptoms I was having, including the head to toe hives and daily migraines (I have not had a hive break-out like that since starting the treatment and the daily migraine are a thing of the past, also!) I will occasionally get a couple hives, or a much milder break through migraine, which I can totally handle after what I was dealing with!! Wishing you the very best on finding your personal best treatment plan for your skin!!

Can you put some coconut oil mixed with black seed oil on the irritated areas and let it soak into your skin for a bit? They will both help heal your skin and kill any type of bacteria and fungus you may have. I think that you should take some black seed oil internally as well. I'm so sorry your in pain. I hope that this information helps!

It’s much more common over the last 3-4 years I’ve found. I’m sure companies have changed their ‘recipe’. Vit E works, I open the capsules and smear it on. I started using 40yrs ago Salts products and over time I’ve used lots of others and am now back to Salts and so much better. I loved the SenSura products but became allergic to them.

My Mom found that using a hair dryer on a cool setting to make sure the area was dry then very, very lightly dusting with Brava powder helped her bag to stick when her skin was weepy.

Domeboro-Medicated-Relief-Powder-Packets. You can order this from Amazon. Stoma nurse said soak gauze in this and apply for about 10 minutes. Maybe?

Back when I was a pre-reg pharmacist I was told that sometimes steroid metered-dose inhaler sprays that would normally be used in respiratory conditions are sometimes prescribed to ostomy patients to use on inflamed skin where the adhesive goes. The theory being that it shouldn't interfere with the adhesion of the bag/flange like a cream would. It might help reduce some inflammation in the interim while you search for a more suitable bag system I'm not an ostomate so have no personal frame of reference for how well it works but it may be worth asking your GI doc about. As others have mentioned you could always have your Salts bags shipped to one of us in the UK but I have no idea how that would work with insurance (being UK based I've never had to worry about insurance thanks to our NHS) and could end up being rather expensive for onwards shipping so again may not be feasible as a long term solution either.

I used the same coloplast flange and had the same issue, so I put the flange on the coloplast protective sheet first, trim and then apply its not thick, heating pad thanks to your advise, stays on and absorbs the weeping so good, seems to help healing.

I have the same issue with all bags including the salts the aloe Vera irritated. Only solution for me is only showering in a bag just before I change it. Even with extenders once I have showered in a bag any bag, I have to change the bag within a few hours or my skin becomes sore. Just the way the bag and my skin works when it's wet x

@kayw

3 жыл бұрын

Yes I cannot shower everyday. I currently use the coloplast sensura mio 2 piece. I change flange every 2 days only way I can manage x

Spraying a little bit of Flonase on the area and let dry before applying whatever needs to be applied, can help some if having issues with allergic reactions on the skin. I first heard about it from someone with my condition (EDS) who used Flonase to lessen the issues from the adhesive when she used pain patches, but I also know of diabetics and others who use the same trick to deal with adhesive allergies. Other than that, I wish I was still working at the medical supply warehouse I worked at before my EDS totally disabled me almost 10 years ago, we did have Salts products there... I’ve never needed to resort to the Flonase trick myself thankfully, and luckily I can rotate my sites too (I wear a pain patch) but with a stoma rotation isn’t really an option, I can’t even imagine having the same area of skin covered all the time and not being able to give the area a break :( If I had still been working in the warehouse I could have at least tried to arrange sending some supplies over to let your skin recover some... But as it is... I guess the best people can do is raise their voices and put pressure on Salts to start selling their products in USA, and if it’s USA being the problem and not allowing Salts then pressure needs to be put onto whichever instance it is that is being a pain in the butt! It’s so important for there to be a lot of options out there for people with an ostomy, everyone skin works differently, have different tolerance and people have different preferences and lifestyle. It’s just not right that a brand that seems to help a lot of people, is being withheld from someone just due to where the person lives :/

It might not be the wafer causing the reaction it could be the adhesive remover or the barrier prep you might be allergic to. I recently had angry weeping skin and eliminated things one by one and found that the coloplast adhesive remover and skin barrier in the packets were the issue. I switched to the spray for both of them., Trio silicone barrier ring, and coloplast medicated prep protective skin barrier. I also find the silicone barrier sticks and stays better living here in FL and it sticks a little better when I have irritated skin ahi out making it worse

I had the same thing going with myself, I had to let my skin breath, which ment sleeping in a bed alone, I had to put mats on my bed, so if I had a moment at night, it would be manageable, I would do this at nite, because laying in place, ment no bowels moving too much. So every chance I could, leave the barrier, it was so hailing to my skin, I was doing Holston bags too, but it's a must to let the skin breath, your in my prayers baby girl♡

I’m your age and had the same problem you’re going through when I had my temporary bag between my Jpouch surgeries. I was seen by Mayo Clinic’s Ostomy specialists and left with what looked like a 19th Century Ostomy bag that consisted of a large belt contraption tied around my waist. It’s funny thinking back on it but at the time not so much!😂 Anyways, I had a nurse recommend putting Triamcinolone ointment over the weepy red areas and air it out nightly for 20mins or so to give the skin time to heal. And honestly this was the only treatment that worked so I hope this works for you too as I know how uncomfortable it can be.

I used a barrier wipe on my grandmother. It would leave the skin sticky to help with the flange sticking. I hate your having such a hard time. Sending prayers

It must be something in the air... I had to change my bag 6 times between wed and Fri last week On Thursday night my bag leaked so bad I Havnt had it happen that bad in bed since I got my ostomy While in the bathroom cleaning it. It decided to put out and it went all over the floor I got the new bag on cleaned the messes and was sitting in my living room and the new bag leaked I put a Hollister two piece on and went to see stoma nurse first thing Friday she gave me some advice it did help. Good luck with your supply prob The again 100x for what you do I have had the best luck with the cheapest bags over the name brands I use 1 piece I discovered that my seatbelt can pop the bag off with a 2 piece while I'm driving this happened on Saturday in the Starbucks drive thru😒

Would maybe “liquid band-aid” help. I’m so sorry Maggie, looks so painful. 😞

Hi Maggie!!!! Love ur videos!!! I'm so grateful I found you and some others in the Ostomy community , I don't know how I would have gotten thru this past year (which was my 1st yr with an ileostomy!) So Thank You For All You Do Girl!!!!! 💕 Hoping this might help..... Not sure if uv tried these already or not, but the Coloplast XL flange extenders have helped me Sooooo much! My bag also tends to lift around the edges and not lay right , but the xl extenders are large enough tht u can apply whatever creams or protection u need and they still stick to the skin and hold everything down!!!! Worth a try!!!! Coloplast will send free samples too!!! I'm sure u probably already know this, lol.... But hope it helps!!!! Good luck hun!!!!💕

I have the same issue, I’ve found if I thoroughly wipe the area with adhesive remover before cleaning and applying a new bag.. my skin heals nicely.

I don't have medical issues as far as having to use an is ostomy bag, but I have severe allergies to latex and bandage adhesives. I get severe eczema from them. My skin looks exactly like that. So so painful. I don't know what the solution is for you but latex and bandage adhesives is fairly common. I seems whenever I mention it no one seems surprised and about 1/2 of the people I mention it to have a similar issue. I use gauze and ace bandage to hold it on. And the ace bandage can't be touching my skin because of the latex.

I have glue allergy during 3 years I tried a lot of material, powder... Locoid 0,1% (lotion/liquid) saved my skin. Apply on skin under the frange, let dry and stick new frange

Hey there. A little late to comment but maybe it helps. I had (and still have to some degree) the same skin condition, mine was even worse judging by the looks of yours in the video. Also with Hollister bags and only on the outer rim, never on the plastic ring itself. The problem was that the skin dried out under the patch to a degree where it simply cracked and little patches of skin came off. Which in turn irritated the skin and made it look like what you showed in the video. I switched to another version of Hollister bags which contain a chemical called ceramide in the glue of the patch, reducing the "drying" effect. Helped greatly for my stoma.

I’m about three weeks postop and I’ve tried a couple of bags and right not I’m using a Convatec bag with sure fit flange and I feel the skin around my stoma burn and I have to change it every three days because the flange turns into mush and covers my stoma. All I’ve tried so far is the powder that helps. I only used the coloplasts with a barrier wipe to help the bag stick but would leak within a day of putting on

I don't have the ileostomy now I have the BCIR. But that is another reason I needed to get rid of the bag. But my skin did that I did have luck taking Diflucan and Cavalon skin barrier wipes. I stayed with Hollister. I hope you find an answer because it can get so annoying. You do need a Wound Ostomy Nurse. I was provided with one for life if I had kept the bag but I just got sick of the multitude of issues. Now bag free and empty one to two times a day with a 30 French cath tube. If anyone is interested they do the surgery in LA.

When my son had horrible weeping diaper rash it looked similar to that, doctor recommended a cream called Calmoseptine. It’s in the aisle with adult diapers and care products not the baby aisle (we found it at Walgreens) It’s gummy and soothing and we layered it on thick. It was the only thing that helped barrier the wound from more moisture. I have no idea how bad it’ll effect the sticking of your bags though.

I have something very similar, I do have an allergy to adhesive and it only came about after I had a really bad allergic reaction to my bag and now even bandaids will make my skin red, swollen, itchy, and sometimes weepy. I had a skin sample taken and my dermatologist said its just an adhesive allergy. I'm assuming the steroid cream didn't help you based on what you said but that's what I have to use to keep the flair down. I've also never needed fungal poweder. I use a 1% steroid cream. Also, I use the coloplast bags and I use barrier wipes, steroid cream, and powder underneath and just use one of the elastic bands that connects to my flange to help it adhere to my stomach. I usually leave that on at-least the first twelve hours and can usually get my bag to last at-least 4 or 5 days, but I've definitely left one on for 8 days before... Also, why the heck won't your doctors prescribe ostomy supplies... your PCF can prescribe ostomy supplies... that doesn't make sense to me. I'm in Texas so I'm not sure if there are different laws in Pennsylvania but that seems odd to me. Anyways, I really hope you find something that helps because that is so frustrating.

Maggie, have you ever tried Eakin Seals. It's a little donut shaped seal that goes over your stoma before you put on the bag. I use that along with a Hollister bag style 8591 which just uses a gentle tape. I've used this combination for years without any skin issues and my skin is very delicate. I get five day's wear on a regular basis with the Eakin Seal and don't use any other skin product.

Ditto to the folks below, Maggie, I’d be happy be a UK hub for you to get salt bags, I’m sure lots of us would! Use us!

It looks a lot like contact dermatitis to me based on my own experiences with contact dermatitis. Do you have any allergies? Because depending on what’s in the adhesive your allergen could be in it. Also sounds like maybe a new surgeon/doctor if they’re unwilling to provide you complete medical care.

Goodness, reactions to adhesive are so frustrating and convoluted. Over the years as a spoony I have had many a reaction to EKG pads, electrodes in the Cath Lab, and am now unable to use many kinds of tape or get meds transdermally; it's so bad that it effects my treatment and can't stay in a unit where I need to wear a monitor. I've tried all the things same as you, I've had some success with Medline Skin Prep, putting a tegaderm as replacement adhesive or even underneath. Sweat is for sure my issue, Drysol (for hyperhidrosis) could help, also using chloraprep to halt the reaction and make the incidents separate rather than a snowball I like, only when I'm not using my favorite coping mechanism scratching my face off :P For me, it also isn't necessarily activated by the adhesive alone, I have found that things like laundry detergent increase my sensitivity to culprit allergens. Topical anti-fungals haven't ever worked for me, I have done a few courses of Fluconozole po, Prednisone, started a routine of taking Zyrtec qid and Pepcid bid as 80% of your immune system comes from your gut. My allergist harps on two points for me, that an allergy needs to be treated as early as possible and treated in a way that it completely resolves, I'm super stubborn and want to think it's not that bad, sometimes to a fault. Before an exposure happens I pre-treat with meds, it's also been super helpful to wait an hour or two before the adhesive is applied to get peak serum levels of antihistamines. If I'm having a polyphasic reaction I can take Hydroxyzine to empty the tryptase tank if you will. I don't have topical steroid withdrawal, but it's a thing. I hope you find a solution or several. My apologies if things I've mentioned are contraindicated for Ostomy users, I have found some really useful info from the broader chronic illness community including alternate adhesive for glucose monitors from The Dale Tribe, Mast Cell activation hacks from Christina Doherty and Amy Lee Fisher and topical steroid withdrawal info from MissFitandNerdy. In truth I ask every good nurse I come in contact with for ideas, try a lot of stuff and wait until I have enough plot points for new ideas to surface.

Maggie, years ago, my son wore an adhesive patch for ADD. It was great and then all of a sudden his skin looked identical to yours. The maker had changed the adhesive, and he was allergic to it.

I use a skin barrier wipes 12021 The Brava® Skin Barrier reduces skin problems associated with leakage and adhesives without affecting the adhesion of the baseplate. A skin barrier provides a protective layer of film on the skin to protect it from output and adhesives.

@LetsTalkIBD

3 жыл бұрын

Which I've tried!

Ouch..im soo sorry for your troubles..

Thought (not an ostomy patient but work in pharmacy) could you use something like fixomull or second skin in a large patch to completely cover the weeping and cutting a hole for your stoma? Thinking it's a thin barrier but is still flexible ❤

I also had such problems with ostomy. I had to change Braun into another brand. From all available in Poland I chose Welland. But first I treated my skin with doctor. I hope you have already found some help.

See if inner good can send from Canada. I'm waiting on response to query. Not sure why you can't get access. Sometimes it has nothing to do with FDA. The products are approved here and find weird since our FDA follows most Americans guidelines

Here is my two cents. Air in the weeping area. Protect the stoma itself, wash as normal, with no cream or anything else applied. Use a hair dryer to dry the area, leave open air as long as you can manage. If there is a T shape flange use left to right, the next up and down, but I believe the states does not have the t shape.

@llamafromspace

3 жыл бұрын

I was thinking this, I mean, just getting allergies or sores in certain areas each time is not a solution.... But allowing to fully heal will hurt less.

This happened to my dad with his colostomy apparatus . He had to change brands.

Dear Maggie, You are a champion in my eyes. I am certainly no expert on ostomy bags, but perhaps a dermatologist might be able to prescribe something for your skin to heal and hopefully, your bags won't start to peel off. This may not be the right suggestion for you, but please know that you are in my thoughts and prayers.