Peristomal Skin Irritation | Common Causes & Fixing My Awful Skin Irritation | Let's Talk IBD

Skin irritation can be so.... irritating! Peristomal skin damage can be difficult to manage, especially if you do not know the cause of it. I talk about irritant dermatitis, allergic dermatitis, and fungal infections. I speak to my own experience having difficult with different ostomy flanges and flange extenders and well as some issues I believe I had with a fungal infection!
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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

[@nightshadehelis9821]

Also, wow at your confidence without a bag on! Even if I've eaten absolutely nothing for a dozen hours, it still feels like I'm walking around with a loaded gun. It makes me angry sometimes because mine will be completely chill until I take my bag off.

[@mayahijazi7614]

Hi I also have a an ostomy and at the beginning it was really annoying ( I've had it for about 4 months now ) but I would never have gotten used to it without the help of friends and family so if u ever need any help becoming comfortable with ur ostomy or talk about what bothers u about the ostomy u have u can always talk to me

[@eileenshea9564]

I am sure you have soothed quite a few people dealing with ostomies. ❤Thank you girl!

[@cynthiaakacyndsmith6539]

I still have some skin issues…. And have had lots of leakage…. I get it…. Most of the time I can fix it with in a week. Stoma powder is my friend, as is stoma skin wipes. You are so brave and amazing. I appreciate you greatly …. Zack too! Hugs and giggles.

[@sherylshenberger8777]

Wow, I am impressed by "Leroy's" behavior! My "Sally" would want to take over the video and make her presence known. 😂😊

[@marykitties1]

I'm so glad I found this video! I think I'm having an allergic reaction to Coloplast! Senura Mio flange. This has been so painful!

[@mandyallen2723]

I’ll be real. I trust your input over most medical professionals when it comes to ostpmies. Most medical professionals have NO idea how to even act with my ostomy! It’s frustrating as a patient

[@leslietelo3201]

Yes! I agree 100%. When I was in the hospital, not one of the nurses knew how to change an ostomy. I had to wait for wound care if I was having issues. I was shocked by their lack of knowledge. And even my PCP, who I have an immense amount of respect for, doesn’t know that much about otomy care. Sometimes I think she’s learning right along with me. 😊

[@amykosikowski2647]

As a home health nurse I agree! I've learned more from watching this community than i did working the floor. Anytime I have a question I turn to this community!

[@jo-annel.wright2975]

I agree. My first stoma nurse was great but she left the hospital and her replacement was good but... I have noticed most professionals stay in their own lane, and refer us elsewhere. Even though we do not have a degree or diploma our RPL (recognised prior learning) means we are the expert of our own stoma and more learning just means our care providers must listen to us just as we listen to more experienced ostomates.

[@catloverKD]

If you're ever stuck for ideas, I think this could be a mini-series. As a non-professional, non-ostomy medical nerd, it's amazing how much you just don't think about.

[@bennie631]

Thank you so much for your videos and willingness to share your journey and ups and downs. This time last year I found your channel after I learned that I would need a temporary ostomy. My surgery was in September and everyone (including my incredible and very experienced surgeon) was shocked with the miracle that my sigmiodectomy could be down with no ostomy (no infection in the pelvis and nice soft ends of colon to put together). Even though I ended up not needing an ostomy, I found so much value in your channel as I was preparing for one. I wasn't looking forward to an ostomy but the knowledge I gained on your channel made me feel much more ready for surgery and after!

[@henkpoog1264]

I found your channel today ,and my God do I have respect for you girl !! You are so so open and honest about everything !! You are a trooper, you have been trough a lot ! God bless you and greetings from the Netherlands 🇳🇱 Lillian 🌹👍🏻

[@cheryltucker6589]

Maggie! Great video! Much good info & well done! More like this, please! Examples are great! Thanks, dear❤!

[@tracypaterson1633]

Suffering right now, thank you for the information!

[@bobbie9984]

Very informational. Kudos on your editing. Smooth transitions. Good flow of content. You are an example of great product production.

[@christinexrussell]

Thank you for these wonderful videos and your amazing attitude! I had that terrible itching around my recently constructed stoma for the first time a few weeks ago but I didn't know what to do or what it meant. Now I'm dealing with incredibly painful peristomal skin, and am working through it. I'm so glad you figured out your skin issue -- I watched an older video of yours where it was still quite bad and I was wincing with you in sympathy as you described the pain and did the bag change. ❤

[@jodibasen9177]

I just want to thank you so much for all your information. You are really an awesome person and explain things so well and you are so positive. Thank you xo

[@ibdandme]

Excellent video, very helpful content, thank you so much Maggie. ❤❤❤

[@deborahmeyers551]

Thanks for sharing this really informative video as all your vids are Maggie. ❤

[@claytonsimplot9554]

I had an ostomy bag once. It was placed about 4" below the spot where yours is located,well below the navel. I would have problems when I sat in a chair. Always get a leak. I had to learn over how to sit in a car without causing a leak. My skin was as red as the stoma. By the time things started getting under control it was time to get it removed . It's been two years , I'm still learning how to use the toilet, everything works but not like it use to. Thanks for your videos , I don't know if I could be as positive as you are if I would still have it.

[@jeansalois1715]

Maggie I just want to let you know that I tuned into your channel Jan/Feb 2020 because I had major surgery in my groin and hip area for necrotizing fasciitis and I had an incision that would not heal and when I searched for help I found you and you really helped a lot. Your channel maybe about your ostomy and things around it but it helps in a lot of other medical ways. And has been so very very helpful. Six months home nursing dressing my wound, vacuum pumps and drains and then another 6 months to actually close, with me taking care of it with your help. The dressings, the bacterial or fungal infections the redness the adhesives, the bandaging the leaking, the insurance company and the supply ordering. I've experienced it all. Having recurring issues with necrotizing fasciitis I use a lot of the same supplies in the same ways. Thank you thank you thank you. With you there it wasn't so lonely or so hard to deal with. You are are like my chocolate candy pick me up. That even when I'm having a bad day or you're having a bad day I still feel better knowing everybody's got something to deal with and we just have to keep on keeping on! And Zack I think is the most positive person I've ever seen supporting a spouse. Happy summer to both of you and good wishes!

[@AusNetFan13]

Maggie, your smile can brighten one's day. Much 🙏 for your continued health. 👍 for Zak. Both of you please take care.

[@karencull9518]

LOTS OF WONDERFUL INFORMATION. HOPE YOUR SKIN IS HEALTHY NOW?..I EXPERIENCED THESE PROBLEMS.. MY OSTOMY NURSE SENT ME SAMPLES OF COLOPLAST PROTECTIVE BARRIER SHEETS, IT WAS A MIRACLE FOR MY SKIN. THANK YOU MAGGIE. ❤❤

[@leslietelo3201]

I had the same reaction to the COLOPLAST products. I too tried to get the ingredients that are in their barriers and barrier strips. No luck. AND, like you, I have fruit and veggie allergies … mouth and throat itchiness. I also stopped telling hospitals about those allergies for the same reason you did. I’m now using Convatec and have had good results. Thank you Maggie for these videos. I’m 65 and three years into my ileostomy, via U.C., journey. I’m am learning a LOT from watching. ❤

[@lilbitlibra3769]

Thank you so much for this video. As a new ostomate living in FL where there is no WOCN in 100 mile radius. I am very thankful for the WOCN that does telehealth.

[@cathydonnelly6113]

Thank you so much for this information. I’ve just had my stoma for seven weeks now. I am allergic to the extenders and my stoma nurse believes I will become allergic quite soon to my coloplast mio bags. I air my skin every two days and cool it with Sudocrem, then wipe off. So far so good. I’ve learned so much from your channel. Keep up the great work.

[@JeMy569]

I’ve also used Gold Bond Powder( there’s a generic brand also that works just as well)… just a very light dusting( not too much) & it heals much better than the stoma powder. So sorry that you had such a difficult problem… thank you for this good information! I can’t wait to try the dentist powder… I only have occasional irritated skin,( thank goodness) but this will help me so much, when I do! LOVE YOUR HONEST REAL HELPFUL VIDEOS! It’s so scary when we have to figure all this out… I experimented with lots of products & got many great helpful ideas from my support group for about 6 months. Now, I have much more confidence & live an almost regular normal life! Thank you!

[@shirleyford4720]

Thankyou so much for all the videos you share I am a new ostomy I find in canada you are on your own 2 visits from ostomy nurse and you are on your own I am lucky to have home care and they have helped me but you have Covered so much I have the skin irritation I use Flovent when needed I will continue to you

[@user-qs2km8op1g]

Thankyou so much for the enlightenment I'm 3 months post Op still learning ❤

[@patriciaconstantino4669]

You shouldn’t feel the need to apologize for talking too long Maggie. You are so very helpful with everything about Ostomies. You have helped me tremendously. I have a question for you. Have you ever seen a video of a bag change done by someone with a parastomal hernia? I have quite a huge parastomal hernia and I’d be very interested to get some tips on how they do their changes. My wafer does not stick well on its own so I have been using pink tape all around the perimeter of the flange .. it does hold well.however occasionally causes a little irritation to skin. I was just curious as to any videos showing hernia bag changes. Thank you for another great informative video 😊

[@dianarodriguez8426]

Thank you for sharing your story. I had problems with my skin around my stoma recently and had to go to a wound care nurse. There’s not a lot of information out there about this subject. ❤

[@ashleyi7911]

This is so timely for me! I have been having sooo many leaks lately after rocking strong for like a whole year straight. So frustrating! I can’t figure out why I’m having so many leaks lately out of nowhere. I’m doing everything the same as I was, urg.

[@princesspinkpuppies]

Very informative 👏. I recently started with a similar issue with a tape border after 5 very healthy skin years. My WOC got it cleared up but soon returned and has been continued to be a hard battle. I now have marathon ordered.

[@robertwray6004]

I too had issues with coloplast, leakage among them and switched to hollister and haven't looked back. Good advice on spraying steroids. Nasal spray has worked for me, and when skin has been deeply irritated, topical silver nitrate worked wonders. Keep up the good work!

[@JPMasonDun]

I watch this channel bc my sister has Crohn’s disease and was told she will need an ostomy. But she’s in denial. So I watch this and send her videos so that she can get more comfortable with it. I try to tell her that it’s not the end of the World. So thank you for these videos. I’m totally comfortable with the ostomy.

[@The9thChord]

If your sister needs someone to talk to, reddit/ostomy has the most helpful people there. They'll know more about things like products, and general lifestyle.

[@starcurtain]

Thank you for your videos, living with UC and failed most medications. Talked with Surgeon July 5, very nervous, all this stoma stuff is overwhelming.

[@sandralaverty8368]

Thank you you helped me out with so many options

[@michaelj2276]

Great timing on this! (I'm entering my third week with my new ostomy, and am struggling a bit with some mild irritation. I think I was actually cutting the flange too small. 🙄) You rock, Maggie! 👏

[@garsu1229]

Maggie does rock❤

[@michaelj2276]

@@garsu1229 Right?! ☺

[@beckyg2604]

I ♥Marathon! In November I had half my colon removed, and they relocated my colostomy. So I had the new ostomy site and four open wounds on my abdomen. My sensitive skin behaved surprisingly well for the first colostomy, but with all the bandages and tape after the second surgery my skin FREAKED OUT. I was red, itchy, and raw all the way out past the extenders. My WOCN practically painted me with Marathon. It really helped my skin to heal, and once all the bandages came off, the skin around my stoma settled down. I would absolutely ask for it if my skin gets bad like that again.

[@Michael-MYR]

Fantastic video, I too switched to Hollister from Coloplast, due to weeping, thank you for your info, keep smiling.

[@tamaraaa3160]

Hi there Maggie sharing your information is very helpful Thanks God bless you

[@traceywatson2092]

Lots of wisdom here, Maggie! Knock on wood, my skin looks pretty good at the moment even with the extreme heat and humidity. I will always be grateful that you turned me onto Flonase…a game changer! ❤

[@cullenandkericaldwell5951]

Did you just put the Flonase on and let it dry? I’m having irritation where the adhesive sits all around my stoma.

[@traceywatson2092]

@@cullenandkericaldwell5951 hi there! Yes, let the Flonase dry and continue with whatever else you use. I was terribly allergic to the taped edges on some flanges. I use the ones that are all hydrocolloid now without problems. Good luck!

[@monmas929]

Maggie, I especially would tune in ultra listen mode when you said the couple of statement about what very sore peristomal skin makes you feel like emotionally. It makes you not want to leave the house. It hurts. You worry your bag will leak…I wondered is there a specific video you have done on just this type of topic? I feel like it would be good for my husband to watch. He doesn’t complain. However, we are not as social and active as I know he’d like to be because my skin is sometimes so sore I don’t want to go anywhere or do anything. And sometimes if it lasts awhile I get depressed. I just wondered if there’s a good video you’ve already done I could watch and then have him watch with me. Thanks for all you do. Your videos are so helpful to me. I started following you in august 2021 when I got my permanent ileostomy. 💜

[@christinexrussell]

I am having really painful skin irritation around my stoma right now. It hurts *so* much! I also get depressed when I have to stay home. I have two coping mechanisms. 1) I think part of the problem with not going out is that you also don't end up spending any time outside so you don't get any sunlight in your retinas (which helps with mood). When I'm stuck inside I use a 10,000 lux lightbox as much as possible during the mornings and afternoons. 2) When I have very little energy and/or ability to go out, I try to maximize the number of people I can see and the fun I can have in one outing. Normally I prefer 1:1 conversations, but I have found that if I can go out to a party or a dance (even if I can't dance myself) I get to touch base with many people in a short period, I get lots and lots of hugs and support, I get energy from the music and the people, but I'm actually only out of the house and spending physical energy for a few hours. This maximizes both my rest time at home and the number of people I get to see. I hope you've found some relief since your post. Best of luck! ❤

[@karenshepler7128]

I got to see this late but very informative .Thanks. Take care 🙂

[@toddrussell1691]

Thank you so much. Your videos have helped me so much. I am having colorectal cancer surgery next week. My doctor says I can either go with a temporary ileostomy or a permanent colostomy and be done. Your openness and experience has truly opened my mind. Now I have a big decision to make.

[@cathysmith6956]

Thank you so much the information you’re giving is excellent. This is something that I am looking to have in the near future I have Crohn’s and they found a couple of cancer cells so I see the surgeon in two weeks.

[@wendiewegner9236]

This was very helpful. I had an irritated area on my skin around my stoma and remembered from one of your other vlogs that you used the powder so I did that, it worked great. Now my abdomen seemed to change and I have a little dip on my right side of my stoma and I seem to leak on that side. It’s only been a year and a half with my urostomy. I going to see an ostomy nurse to see what I can do. Thanks for all your info. You are such a sweetheart. 😊💕

[@JeMy569]

I have that issue & I use an extra wax ring( cut in half & built up on the dip side) & also a little bit of paste( but it can irritate, depends on ur skin). This helps build up the dip side & evens things out. Also I add an extra y-shaped or a moon-shaped tape( sold at supply companies( covered by insurance) to the dip side, to help stop any leaks. I also use a short blast from my hair dryer to make sure everything sticks well. Also really press around the wax ring & flange( with no mucus/liquid leaking from ur ostomy) after I apply my pouch & supplies. If that gets under the edge, it won’t stick well & eventually leak. I hope that helps you!

[@PeggySue-RL]

Wonderful I formation for me just had surgery 2 months ago. Having electrolytes problems too. Bless you🌹🌹🌹👍

[@nathan65071]

I tired coloplast a few weeks ago, I asked for some samples and got them. I usually keep my appliance on for about 3 days when I went for a change and a shower I noticed I had some skin irritation that I didn't get when I use holister. Even tho I liked the coloplast products I will continue to use holister from now on.

[@christopheriacovo8472]

Oh how I wish I had an "OUTIE" stoma! Mine started as a "normal stoma" but my intestinal spasms were so extreme it actually pulled the inside out portion or turtle necked part above the abdomen surface down below.... SO, now my stoma looks like a bellybutton 😅. Yes, I have an inny!

[@traceywatson2092]

Hi Christopher. My first stoma was an inny. So very difficult to work with. I had it for about a year before having the rest of my colon removed, thus moving my stoma. I made it very clear that I wanted an Outie this time around. That was 30 years ago, and my outie has served me well. For the inny, I used a durahesive convex flange with paste to turtleneck the edges. I also wore a hernia type belt to keep the flange in place. Those convex ones want to pop right off. Best wishes to you. As I said, my inny was 30+ years ago, so I’m sure there are new tricks and products for dealing with it now.

[@nicolejorgensen1483]

I don't know if you did it on purpose but I love how your eye shadow matches your pink outfit.

[@hereiamu1]

Expellant and informative video 👍

[@jeanettcanham9059]

I have similar issues with stomach acid around my feeding tube site and urine from my sbc . Your info crosses many medical appliances.

[@kunibob2]

I came here because I'm reacting to Coloplast Sensura Mio adhesive. I have mild allergies to many fruits due to cross reactivity from pollen allergies. I just about leapt out of my seat when you said that, hahaha. Thank you for sharing your knowledge! I feel like I'm in the allergy/yeast cycle right now, looking forward to seeing my NSWOC on Tuesday. 😭 But this video gave me hope that there are options!

[@jeanmank6342]

You are my new go-too. I'm experiencing a lot of pouch gas, which of course, can be painful, and a farting stoma! The itching is the worse. My HHCA helped me change mine yesterday and we saw a rash but she didn't have Stoma Paste/Powder. I hate how dirty it looks inside. What brand are you using, that have those flip-over velcro closings?

[@user-de9tb3hu2p]

I just got over a bad rash first one in 20 yrs that bad.thank you for all your information

[@ashleyi7911]

I tried coloplast when I first got started and my skin hated it too. It itches like crazy. I don’t know that I’ve ever had a fruit allergy but that’s very interesting.

[@CattyT1]

Fabulous thank you. Stoma paste has really helped my skin. The bottom half of my stoma is really recessed so I always got leakage and sore skin there, but now with paste it’s much better. I’m still v messy with it and have to put it on the flange as I can’t ice it on otherwise!

[@lenac7655]

Excellent info Maggie & looks like you had a weird floating visitor behind you for a while.😮

[@sarahbeekman3814]

I wish you were around back when I had an ileostomy! My skin was so itchy I just wanted to rip it off. It was maddening! I pretty much just suffered through it. I have very sensitive skin. I now have a j pouch so it’s not an issue for me anymore 🌺

[@sherylbunker8671]

Maggie you look especially beautiful today! ❤

[@ineverhadthemoney7857]

tap like a paper tap helps as it lets you see as the tap my be holding and give up a heads -up on replace ,I use 1 3/3 Convatec x 20 x2 Natura SUR-FIT with hollister 8770 clips workes the very best for over 30 years for me and the Convatec 7/8 -1 1/4 Durahesive part number 404593 for easy fit

[@mylittlepinkpastelcorner]

Thaks for your videos❤❤❤

[@sybilkent4913]

Very interesting. I personally prefer much more than sensura mio the older system 'click". The flange feels somehow more normally to me. The extenders, well, I try to avoid them in general. I was looking for the Holisters which are third-circled instead of halfs but they are not available in Germany.

[@traceyallen8286]

I've had a urostomy for 55 years, and still occasionally have skin issues although they're NOTHING like they were before we went to disposable ostomy products.

[@jodiv2928]

I found that I could not use Coloplast either. Everyone ravs about them so much but my wear time was much less and their flange extenders made my skin itch and a bit red.. So I am a forever hollister gal.. If you are looking for a flange extender I have been using Hollisters flange extenders with the cera plus #79402.. Much better for my skin.. Wish they were more like Coloplast where you only have to use two to cover your flange instead of using the three short ones. But it is what it is.

[@thewisepowerchair2369]

Hello Maggie. I don't have my stoma yet but I have used barrier creams in the past; once for my anus when I was having lots of diarrhoea, and another time for a pressure sore on the back of my leg. Both times the barrier cream was useless. The first time, I used vaseline with a layer of Anusol cream and the second time I used Marathon and applied a dressing. Another good skin barrier, aside from Marathon, is Opsite Flexifix. A thin, transparent adhesive.

[@marynlyn]

I dropped the stoma powder/skin protectant once I started to use NuSkin on the red area immediately around the stoma. The NuSkin wears off and so does not extend wear time, but it is present long enough to protect the red skin and to allow it to heal.

[@shirleydavis3387]

I have to change my urostmy wafer every 3 days because of skin irritated by wafer glue and no problems since then thanksfor this information .

[@helenm6474]

Interesting, Coloplast bags made my stoma skin irritated too, and it wasn’t due to leakage. Have some nasty photos though!

[@damiangibney7020]

hi maggie ,,hope your well ,i use stoma paste ,its not perfect but it ok i still use a ring around my stoma then i fill up between the stoma and the ring with the paste then apply the bag ,dansac dranable ,but i have also used your bags that i was sent by different supplyers sent to me as samples free of charge ,when its cold i heat the bag on a radatior for about 10 mins to get it hot ,it seals the bag to the skin very quick and i can get up to 3 days out of a bag ,after that time the paste will be broken down and may leak ,to avoid this just change the bag ,while i dont use the power very often ,you must have it handy just in case you cut your stoma when putting on the bag ,this has happened to me the powder seals up the cut rapid ,but the mess looks like a slaughter house on a bad day ,love your posts very informative and helpfulfor new people on here that ended up the same as us ,,keep it up

[@SamanthaSmith-tv1jl]

I change the whole bag once sometimes twice a day I use dansc soft which are a bit like breathable plasters on the base think only available in UK but not sure and never have a problem,I also use hydromel skin hypoallergenic skin moisturizer just to nourish the skin

[@JamesBaker-wb1gw]

I’ve got a question for you:do you allow your skin breathe before you put a new appliance on or do you just give it a good cleaning then apply a new appliance?

[@emmagracie3364]

I have surgical permanent J tube and have Been having some skin issues around my stoma and even more irritation where I tape my feeding tube extensions down to my belly so it doesn’t accidentally get pulled on.

[@SharpLife4]

I have diabetes devices that causes rashes as well. I find these products helpful but in canada nothing is covered

[@TheMommyMikka]

I have the same allergy to some fruits too pineapple is the worst for me and strawberries. But when I had a NJ taped to my face my face starts to weep from tape. Next time I’m using skin protection wipes or spray. Why didn’t my home nurse or regular doctor think of it when seeing me regularly 🙄.

[@carolepenfield7295]

How did you film this for 25 minutes with Leroy behaving? Your parastomal skin looks beautiful. If you don't mind my asking, is the swelling around your stoma a hernia? Mine is starting to bulge 6 months post ileostomy surgery and I do not want any more surgeries.

[@KennMSr]

Looking forward to hearing about your trip to Colorado? Hopefully you took dark clothes considering last trip.

[@SlipperySalmon94]

Having the exact same issue ATM and also use Coloplast bags! Shame as I love the bags but definitely think it's a reaction to them

[@sherriewhitten1168]

Having the same problem with Coloplast, which makes me so sad because after much trial &error, I finally had a great fit for a severely protracted stoma.

[@SlipperySalmon94]

@@sherriewhitten1168 mine needs a good deep convex to avoid leaking along with the Coloplast paste, and Coloplast have a really good deep convex bag which is such a shame. I'm yet to find a replacement - but in the meantime I have been cutting the perimeter of the baseplate shorter around the outer edge to leave the irritated skin uncovered so I can put cream on it (I've been using a Manuka honey medical cream which has been great).

[@SlipperySalmon94]

@@sherriewhitten1168 yeah I love Coloplast as they have a really good deep convex baseplate which Along with the paste they have I've found really useful. I'm yet to find a replacement bag. In the meantime as my irritated skin is mostly near my hip and on the outer part of where my bag sits I have been cutting short the outer baseplate so it doesn't sit on my skin and allows it to be uncovered so I can apply this Manuka honey medical cream I got which has been working really well for me

[@mandyallen2723]

I’ve been struggling. I’m on a weight loss and life change journey when it comes to the foods I eat. I’ve been losing a lot of weight (almost 80 lbs now) and if I don’t change every other day I get so raw underneath. 😢

[@tamarawelsh6873]

Great stuff as always Maggie! I am curious about something. You have an ileostomy and I have seen where you talk about wearing disposable (non-emptying) bags. Is your stoma not very active? When I had my ileostomy it was high output and there was no way I could have used a disposable bag because I would have had to change it out 10 to 15 times a day. Maybe more because the disposable bags are a lot smaller than the high output bag I had to use. And I definitely wouldn't have been able to make a video with my bag off because my stoma would blow. Now I have a colostomy and it was also high output until I started a drug for SBS. So my question is, how do you get your stoma to not be very active? Is it the food you eat or a medicine you take? I would love to be able to slow mine down even more.

[@LetsTalkIBD]

Thanks! I actually did a video on this recently - I found a way to empty non drainables through the ring! I like them because they are sleeker and I can get them cleaner after emptying :) unfortunately, my stoma is very active!

[@dinaimb518]

I know you mentioned getting the flange wet and that’s my problem when I need to shower. I don’t want wet it or have to change it every time. What do you use to cover when in water? Any companies you know? DIY tips. It’s a nightmare when it’s wet and then the adhesive comes undone and stays wet too. Anything would be appreciated ❤.

[@missiris1234]

I think you are helping so many, great advice and even showing your stoma. You are an exceptional young woman😍

[@tylerbird1359]

Cavilon advanced is great too similar but its clear not purple

[@trishameloling2367]

Calamine helped me everyone said on your bag won’t stick well I sealed it with Cavilon barrier film an game changer , my skin is not had great skin for 3 days

[@AnaFernandez-jp5uh]

I'm allergic to latex. How can you get a tight seal on your bag?

[@DanaLovesDiamondPainting]

I am curious. Can you feel when you have an output?

[@user-zu9uh9xc1i]

What barrier spray are you using?

[@Mescha_]

I wonder how it would work with pregnancy?

[@Bookwormscififan]

Your fruit and veg allergy sounds like my mum and her allergy to coffee! She gets a sore throat and like a cold when she drinks coffee. I have an intolerance to coffee, so I can’t drink the wonderful coffee I found at Coffee Bean and Tea Leaf in Singapore!

[@margaretgallagher4711]

When I had my stoma 64years ago I wore bag like a hot water bottle it was heavy

[@jennyblaser3918]

If I can add - sometimes less is more! After a year I finally accidentally discovered that the cavalon/skin prep, powder, stoma paste, eakin ring, steroid inhaler, convex flange, flange extenders (hydrocolloid ones by Coloplast) and then tegaderm over the extenders and beyond about 2” on all sides and then am ostomy belt 🤦🏼‍♀️ My bags lasted me maximum 12hr and I was red, yeasty, raw, and slowly they kept adding more and more and more like products to keep the thing on! My stoma is also about 1” above my bellybutton; and 2” from midline. Inc quad but functionally I’m closer to a T5ish para. Took me a few years to be able to do this all on my own but most importantly….I feel or reposition in bed if I leaked. Now I wake immediately like it’s a superpower of mine or something….or just PTSD 😅 The leaks got me hospitalized 3 times! Once for the burns and changes needed every 15-30min for few days while there and my skin was peeling from my right thigh, my “lady bits” (for mine. Not all) were not spared, and of course my torso and back - all open and weeping and peeling and some blood even and it was horrific! The others were sepsis from it leaking all over my central line which at the time was a PICC and fairly low on my arm, maybe 1.5” up from the AC? Literally beside my ostomy and this has been addressed thank goodness! I was at the pharmacy that handles my supplies and TPN etc for weekly pick ups and my bag fell off before I could pull out. I had nothing left or with me. This pharmacy wasn’t handling ostomy stuff yet but I asked what they had, if they had, anything and got a box of Coloplast one piece and as a new ileostomate it was foreign territory! This was maybe 6 months post-op? They were basic one piece with a full hydrocolloid flange with nothing to stiffen it or anything! I got some wet wipes and cuticle scissors and did a basic wipe, cut, stick and pray. 5 days. I got 5 days out of a bag I slapped on in a rapid “so I hopefully don’t get covered in output on the way home!” approach and it was fine for 5 freaking days! The record prior was 2. 2days and that was a miracle at the time too! Now I am good for a week or so on average and it is wild to me now looking back…I never thought I would get here! That said, I too had the same discovery that Coloplast = me allergic or reactive and sensitized at minimum! The brava and sensura Mio as well. I also have reverted to Hollister and I’m using the mild convex CeraPlus flange and use the green line size…swipe of cavalon and I’m good to go! We tried these at the start too bud gave up in a week or so! Little did I know the issue was the stuff we were covering me in to keep it on that was making them pop off! Not. Fun. It’s ridiculous how little we are empowered and educated and collaborative with our teams and ostomates too! Thank you for what you are doing here! I watched all your videos years before I ended up with my ileostomy and now waiting to see my surgeon and specialists to talk proctectomy and urostomy or some other bladder augmentation and so grateful for my ileostomy now!

[@KenBoswell-oz3ix]

It took me a year to find products that worked for me. One that has saved me was kayara 5 paste by hollister. This is the only paste with healing herbs from other countries. Kayara 5 by hollister has been discontinued this year. And I am devastated. I have tryed new hope bags, adapt rings, eakin cohesive rings, all the pastes I just get know where. Pretty upset. I bought the last tubes of kayara 5 from ebay cost me $100.00 a tube. 😅 cannot find more. I healed instantly from this product. I tryed marathon it is super expensive, and doesnt come off skin, just leave it on and go over it with skin barrier wipe, then flange?

[@car17yn71]

Lol, my WOCN learns from me because I have already tried everything they would suggest.

[@Grandpa82547]

Do you have a valve on your stoma? How do you get it to shut off for that long. Mine takes a break for 5 or 10 seconds sometimes. (Maybe its my coffee habit.}

[@user-zu9uh9xc1i]

Wow! The skin around your stoma looks amazing. 24:33

[@janeperry6479]

Do you think it is because the colloidal flanges are made of pectin? This would tie in with my allergies which I have the same as you. I now have to wear duo derm extra thin, wound dressings underneath my natura colloidal flange. Otherwise, I cannot wear any ileostomy equipment at all. Jane Perry

[@sherriewhitten1168]

I have trouble with some fruits too, and am having trouble with Coloplast unfortunately.

[@jonsays3762]

Is the urinary tract typically routed into a stoma? I noticed you were commenting on urine as a common irritant. Here is an upthumb; I had a lot of inguinal surgery as a younger dude; now I do microbiology and immunology so I get interested in irritation/allergies/treatment of microbe-based problems. Be well!

[@LetsTalkIBD]

Totally depends on the person! Some people have urinary stomas, some for stool! Some even have one for each!

[@marivicchansing4717]

Be careful using too much stoma powder because once you accidentally pour powder in your stoma it will bleed make sure rinse it right away..stoma powder is not something to use all the time. The best way is use the skin barrier don't be afraid to put extra barrier coz it helps your skin and its better to put the skin barrier start on the edges of your stoma so any leaking won't go in your skin.

[@jacquelynbaisden1583]

I wonder if it's a latex allergy, I am allergic to latex and have food allergies because it.... Just food for thought😊

[@tamarawelsh6873]

What steroidal spray did you use?

[@tanianigelwade8935]

Please help me I have butt problems. My skin. I have bad butt ibs on the loo constantly. Or 3 partial bowel blockages. Life can really suck.😢😢😢

[@jemsjemski533]

I think your body is beautiful and you should own it ❤❤ as someone who doesn’t have a stoma, I’m curious as to why it is so red? Is it that you literally have your intestine on the outside? It just seems very raw. Sorry if you have spoken about this in previous videos! If I had met you on a beach lounger on holiday and not on KZbin I’d have found it to be very normal but curious about how it all works! 😂❤❤

[@LetsTalkIBD]

Yep, it is my intestine! Stomas are made my pulling intestine through the abdominal wall and then flipping them inside out (like a turtle neck) and then stitched into place. Healthy intestine has lots of good blood flow, which is why it is this color!

[@jemsjemski533]

@@LetsTalkIBD wow so amazing, our bodies are so resilient and modern medicine is very clever… good luck with all the adhesive wipes return 🫣🙃 if only customers service was a clever hey 🤷🏻‍♀️ with love from the UK xx

[@barbaraederi1828]

Can you send me a no flange sticker for my flange

[@buchsdrn]

Are the flanges made of latex?

[@LetsTalkIBD]

No, most medical products do not contain latex because of the prevalence of allergies