Common Ostomy Skin Conditions & How I've Gotten Rid of Them! | Let's Talk IBD

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  • Опубликовано: 25 дек 2024

Комментарии • 105

  • @pamela-gw7xo
    @pamela-gw7xo 4 месяца назад +60

    Maggie...where I live on the West Coast of Florida, there is no such thing as WOCN. I assume it's a wound care nurse, however, when I have problems with my ostomy and ask the doctor's...they look at me like I've got 3 heads!! I even left the hospital without having any idea how to change or care for my colostomy! And I've had 3 revisions in the 5 years that I've had "Myrtle Wilhemena" I have learned everything I know from RUclips videos!! Your channel has been so very helpful to me!! Thank you so much for doing what you do!! You have been a Godsend to me! ❤❤❤

    • @louiseperry6643
      @louiseperry6643 4 месяца назад +3

      Yes l get that l asked for a product or a change , yes you got it , didn't get it. Have to cope on your own. I've don't have any help, never had.

    • @queenofdramatech
      @queenofdramatech 4 месяца назад +1

      Sorry to hear that. I have an injection med and could have a nurse help me most of the day and night. Do any ostomy supply companies have them too?

    • @Paulaatmdbqdotnet
      @Paulaatmdbqdotnet 4 месяца назад +2

      Such useful information! Thank you!❤

    • @quelyn1995
      @quelyn1995 4 месяца назад +4

      Same! West coast of Florida. No one has checked my peristomal skin since my surgery on the east coast almost 18 years ago. They had two amazing WOCN’s there, one with an ostomy herself. Just figuring it out myself as I go since then.

    • @pamela-gw7xo
      @pamela-gw7xo 4 месяца назад +2

      @@queenofdramatech Haven't found any help except RUclips...

  • @RoseMaryBowen
    @RoseMaryBowen 4 месяца назад +33

    I had a colostomy created 2 weeks ago. Learning a lot from your videos. I am overwhelmed by the amount of products amd accessories. I was shown some techniques about changing my flange and pouch. I've had 3 different nurses who all have different techniques. I'm pretty much relying on your videos, "vegan ostomy" and "ostomy diaries" for information. Thanks for your videos. ❤😊

  • @barbarafritchie2000
    @barbarafritchie2000 3 месяца назад +2

    I’m 13 weeks since ileostomy surgery. Didn’t have much instruction. Developed a hole the size of a quarter next to my Stoma. And very painful. Found a wound care nurse once. I’ve been using the silver felt material. Topped with a matching piece of skin barrier. The broken skin is finally down to dime size. I change everything every 2 days. Great channel. Thank you.

  • @lisakelly5210
    @lisakelly5210 4 месяца назад +4

    Wow this was very informative as my disabled son has the red bumps all around the red cherry and because he can’t talk I didn’t know it was painful I do struggle with the bag lifting mostly every day so for awhile now i change the bag twice daily , night time is the worse as when I’m sleeping my son might be having irritated skin and usually rubs the bag so hard the contents leaks out very much often and as you can imagine I wake up to the smell first then see a disaster . Thanks for showing us the different skin break downs x

  • @tessstarowen6579
    @tessstarowen6579 4 месяца назад +10

    We put the powder on, the use a soft small artist paintbrush to brush off all the excess before using a skin protective spray. The paintbrush works great!

    • @LetsTalkIBD
      @LetsTalkIBD  4 месяца назад +2

      I love that - that is a fantastic idea!

  • @tammypatten5138
    @tammypatten5138 4 месяца назад +9

    Coloplast does that to my skin . I have had granulomas right along. I got (Tina) my stoma in 2018. Raw skin is painful. I use nystatin powder all summer because of sweating so much. It has been so hot and humid in Maine this year. Thank you for your videos.

  • @AdAstra870
    @AdAstra870 4 месяца назад +5

    So helpful - exactly what I was dealing with today. WOCN put silver nitrate on my granulomas today- youch!! With marathon on top, then stoma powder. + Skinprep. Like you, after trying a number of things the Eakin seal + Convatec low profile bag seems to be what helps the best. Hollister edges are rigid, so you can't cut the hole as close to the stoma..Plus the Hollister convex flange I have has a deep cup that traps output against the bottom of the stoma. Bad design! Hollister flanges are stiffer so when you twist it pulls on the skin more opening the damaged areas. The stoma powder helps with skin prep. But with an output pH of 8+, I have to keep the barrier ring seal right at the edge of the stoma and any gap between the flange and stoma I keep at the top. This keeps output that drips out blocked from seeping into the space between the stoma and seal. Need to tailor the hole to match the stoma shape as best as possible. Amazon sells pH indicator strips so that's been helpful in sorting out what foods drive a reaction.

  • @waynegraham7608
    @waynegraham7608 4 месяца назад +2

    Hey maggie. Great video as always. Thank you for being one of the few of us that still post and continues to advocate for us. Im sure you have many times. Im having a problem with peristomal breakdown and i think iv been using the stoma power wrong. Do you think one day we could get a quick short atleast showing some of us newbies the light? Even if you dont see this or can't make one thanks again for being our leader!

  • @car17yn71
    @car17yn71 4 месяца назад +4

    I am allergic to all adhesives. I have to take antihistamines to help keep the allergic reaction at bay. I also have to change my appliance every other day. I also have to make sure I use my skin barrier spray ... in layers. I am changing my appliance while watching you. :)

    • @waynegraham7608
      @waynegraham7608 4 месяца назад

      Im sorry your struggling. Im not a doctor or voice or anything on the matter just a new ostomate. Have you tried flonase when changing a bag? Idk but i feel like it might be a good addition for you if your allergic. I hope you find something that works

  • @gailmerriken1275
    @gailmerriken1275 4 месяца назад

    I just discovered your channel and like your content, it has a lot of help for new ostomates, well done! I have issues with tape adhesives and I developed an allergy to Hollister barriers. I had what appeared to be red pimples which then “popped” and started bleeding under my barrier. So I now alternate between Coloplast and Convatec. I use skin prep when needed too. I received my permanent colostomy in 2002 due to colorectal cancer. Over the past 20+ years wocn nurses are nearly nonexistent. I will usually contact the companies for samples when they have new products that might help.

  • @dianabrown833
    @dianabrown833 4 месяца назад

    I'm happy for you that Convetic has worked on your skin. I tried them for almost a year with no success. Perhaps the various rings and pouches work for certain skin types and stomach configurations. Currently what is working best for me is Coloplast. The rings adhere better and come off better than Hollister and Convetic and the pouches are more comfortable. I had stoma revision on June 27th, so the swelling is still receding. I will just have to see what works at that time. I do so appreciate your informative stoma videos. Thanks for your time.

  • @cgomez77
    @cgomez77 3 месяца назад

    Thanks Maggie for sharing! Glad you found the right products. I am in Sensura mío and although red just for a few minutes when removed and I have to blowdry edges and bag fabric after getting wet, I found adding a Trio Silicone flange extender before swimming or showering almost eliminated the stickiness and lifting/irritation. I removed it immediately after towel drying and discard and the blow dry the flange.i do sometimes feel itchy under the flange itself, especially in the heat. That can be annoying. As for skin issues. Strangely enough I had a terrible le reaction to either Cavalon or the hollister flanges used in the hospital. It looked like a chemical burn with open skin and oozing, bleeding, and took forever to heal! It was so painful. Secondly, I had to get my stoma moved to the left side in May of this year due to a huge parastomal hernia that developed shortly after my first diversion and loop ileostomy surgery a year and a half after first placed along with a proctocolectomy due to Crohns and what I now know was anorectal cancer. Now I am gaining weight and absorbing a little better. LMNT REALLY HELPS!!!! Lastly, but with a TW, you can get silver nitrate sticks on Amazon. (MY TW/DISCLAIMER TO ANYONE SEEING THIS: please make sure you have seen a WOCN and shown how and when to use them first! It does “burn” the granuloma and can burn your skin if not sure what you are doing. ) Silver Nitrate Caustic Sticks 6" 10/ps link:
    a.co/d/hkgbv72

  • @persephonerising1890
    @persephonerising1890 4 месяца назад +1

    Coloplast is the only ones I'm NOT allergic to!! It's the tape edges that causes the problem for me!

  • @I0nGamings
    @I0nGamings 4 месяца назад +7

    It's funny that Coloplast causes that for you. For me Coloplast is the only one so far that doesn't cause me to break out. When I left the hospital they sent me home with Hollister and those caused me to break out and itch so bad.

    • @RiaVersteeg
      @RiaVersteeg 4 месяца назад +1

      Everybody's skin is different.

    • @karencull9518
      @karencull9518 4 месяца назад +1

      I am unfortunately alllergoc to the adhesives from hollister and coloplast. Could not keep a stick. Fortunately i started using coloplast bartier sheet. That helped my skin. My ostomy nurse sent me a sample of it.

    • @AdAstra870
      @AdAstra870 4 месяца назад

      ​@@karencull9518 me too, only convatec and eakin seals work for me. I have highly alkaline output, so maybe its a chemistry thing.

  • @jeanlewis7379
    @jeanlewis7379 4 месяца назад

    Hi Maggie again the best advice and another good vidio from you to help others including friends and relatives of us who love your vidios .

  • @kimberlylum138
    @kimberlylum138 Месяц назад

    Thank you for this information, it is really useful for me!!

  • @cheryltucker6589
    @cheryltucker6589 4 месяца назад

    Thanks for the info! This was a great episode 😊

  • @jenny_rice
    @jenny_rice 4 месяца назад

    Good information as always. And good to hear that your finger is better! 💜

  • @mellando9770
    @mellando9770 4 месяца назад +1

    My dad uses a betadine swab before he applies the flange. He lets it dry and in 1-2 days it’s cleared up.

  • @rudynewman2040
    @rudynewman2040 4 месяца назад

    Maggie, I love your channel, your videos, you and your darling hubby and the dogs! I have wanted to tell you this for some time but its not about ibd so I hesitated. I just wanted to comment that you have the best eyebrows!!! I wish I coud shape mine like yours but mine are thin, not as thick. I am envious though. Ok, so now I told ya! See you next time!

  • @cgomez77
    @cgomez77 3 месяца назад

    Miconazole powder works well and is available without a prescription. ❤

  • @DunoonVanRijn-dx1hr
    @DunoonVanRijn-dx1hr 4 месяца назад +2

    Where I live there is no community nurse. We have to go to Emergency at nearest hospital. How you get there is also a issue, via taxi or ambulance services whom are questionable. Poor system control and service is not high on priority list.

  • @DenisePeeks
    @DenisePeeks 3 месяца назад +1

    Many times I remove my bag and take a shower. "Wilbur" loves the water.

  • @emilykrarup
    @emilykrarup 4 месяца назад

    I have been dealing with PG around my stoma since Christmas time, when I had an emergency repair to my peri stoma hernia. Still have the hernia and will need to wait now, until the PG heals to have stoma moved to the other side. The scaring relapsed two weeks ago when we decreased the steroids. So now I have new PG ulcers on top of the older thick white scars. Much like dead pool 😂. Went through 5 bags the other day, so plastered the area with stoma paste, used a ring and a Coloplast protective sheet. The bag hasn’t leaked and not planning on taking it off anytime soon 😅

  • @karenshepler7128
    @karenshepler7128 4 месяца назад

    Thank you for your update and help 😊😊😊

  • @GSXSF1k
    @GSXSF1k 4 месяца назад

    I lotion my skin for 1-2 minutes before wiping it dry then I put on my teraderm before the template or bag. I use a light lotion that is anti-rash. My skin is in great condition.

  • @karencull9518
    @karencull9518 4 месяца назад +1

    Helpful video msggie. Hope your ostony is doing well. I use nystatin powder on my ostomy. It seems to really help. But know not everyone will have thè same benefit.

  • @WimpyGimpy
    @WimpyGimpy 3 месяца назад

    Been pretty lucky to not have had any skin issues so far in the last 3 years (I'm a Newbie) :)

  • @CattyT1
    @CattyT1 4 месяца назад

    Brilliant as ever, thank you. I get granulomas and they bleed, v annoying! In the U.K., Respond Refresh 3in 1 spray is fabulous for on the go, but I can’t use it 2 days in a row or my skin hates me. Such a shame.

  • @bs9977
    @bs9977 4 месяца назад

    Thanks for the info n on the granulomas I started getting those in the last year and they've stayed small and not been an issue so I just cut the wafer out more to keep from any rubbing

  • @Rcn51
    @Rcn51 4 месяца назад +1

    True I'm having this problem my skin so raw

  • @elissa701
    @elissa701 Месяц назад

    Your video was very helpful, is there a way to connect with you? Have a urostomy and have really complex health issues. I also need an ilestomy. After 4 years I’m suddenly having skin issues and acesss to help has been almost impossible. I’ve been taking fluconazole on and off. It works but then I go off it and it comes back. The doctors who saw it the first time thought it was contact dermatitis but I’ve broken out in different spots around the bag on stomach and pubic area. The pain is internal and external burning nightmare. Right now my skin looks fairly clear other than a couple spots but the skin outside the bag the spots are almost gone yet the skin is burning and so painful. Everytime I change my bag (which is every other day) the pain blows up again and I break out in hives all over. It’s a mess. I’m at a loss trying to figure this out and wondering if you wouldn’t mind taking a look at some photos.

  • @MoggyMaggy
    @MoggyMaggy 17 дней назад

    I’ve just developed an allergy to my stomach paste. Bought another one and it’s stopped itching 😊

  • @paulwestwood3895
    @paulwestwood3895 4 месяца назад

    Hello Maggie, in one of your videos you mention that you ride a bicycle. I had the proctocolectomy 6 months ago and I want to get back to riding my bike. Do I need a special saddle on my bike now? Keep up the great work of getting our condition out there

    • @LetsTalkIBD
      @LetsTalkIBD  4 месяца назад +1

      I personally do not need anything special to ride, but this may be different for everyone! I will say - I don't think I could have ridden one 6 months after surgery because it took me about a year to fully heal.

    • @paulwestwood3895
      @paulwestwood3895 4 месяца назад

      @@LetsTalkIBD Thank you for replying and I think I'll wait until a year as I have healed but still very tender and sometimes a little painful.

  • @NikkiSeal
    @NikkiSeal 4 месяца назад +5

    I thought you were saying toothpaste was inserted. I don’t have anybody following me. I had my ileostomy 8 years ago. I feel I’m out here all alone.

    • @DeborahBaxter-k2v
      @DeborahBaxter-k2v 4 месяца назад

      I've had my illostomy for a year now I make sure completely dry before adding barrier ,ring and bag so far no issues.

    • @nicolaisgro8745
      @nicolaisgro8745 3 месяца назад

      @@NikkiSeal I'm in the same boat after 17 years. My heart is with you. The only follow up I've had is surgery for hernias and twisted bowel,which I knew nothing about. I'm amazed at how many people have such a life altering surgery with no after care. It's every kind of wrong. 💗

  • @thewisepowerchair2369
    @thewisepowerchair2369 4 месяца назад

    Hello Maggie. Glad your finger is better. Is Calamine lotion useful in treating weeping peristomal skin?

    • @jeanmank6342
      @jeanmank6342 4 месяца назад

      Yes! And it's sooooo soothing. You can also crust it (let dry first before skin before). Stoma powder has never helped. Desenex powder always work. For the worst? Flonase!

    • @thewisepowerchair2369
      @thewisepowerchair2369 3 месяца назад

      @jeanmank6342 Thank you (just seen this).

  • @TRUTHisTRUTH70
    @TRUTHisTRUTH70 4 месяца назад +3

    Nystatin powder is awesome and I got a Rx for it right away (just to have on hand). I also found anti-fungal athlete's foot powder to do the same thing (no Rx needed). Agree that you have to use a TINY bit, rub it well in, and then the bag will stick okay. I have a urostomy, so of course my output is totally liquid and will burn the skin for sure. My WOCN always says "less is more" so I don't use any products (barrier spray/wipes, etc.) on my skin. Just a moldable ring and the bag. I know fecal stomas are different and need a different approach.

  • @Lynda-777
    @Lynda-777 4 месяца назад

    I had a Urostomy bag leak today for first time in months, no fun and that aggravates skin irritation. I was on a Zoom call and had to end it.

  • @nicoleseymour523
    @nicoleseymour523 4 месяца назад

    I'm allergic to all bags and seals. I have just had to find the one which gave me the least amount of reaction. I have always had issues with adhesives.

  • @simracingwales4997
    @simracingwales4997 4 месяца назад

    I have 17 parastoma ulsers some are deep every single day for over 2 years im so draind mentaly leaks are almost every day my skin is distroyed and because it hurts so much i try to change it as often as i can its so bad i use dry gause on the wounds. nothing is working :( .

  • @A---ti3zz
    @A---ti3zz 4 месяца назад

    I was super allergic to coloplast as well. Absolutely horrific. I ended up having to go to urgent care. I had to get a steroid spray and hydroxyzine because it was so itchy.

  • @kenshores9900
    @kenshores9900 4 месяца назад

    Do you experience allergic reactions to the acrylic adhesives? These can cause contact dermatitis. I would feel the problem you would experience with alpha cyano acrylate adhesives is that they are only released with ketone solvents. My questions come out of curiosity. I am sorry that you this issue in your life.

  • @caseymah1543
    @caseymah1543 4 месяца назад

    I see most ostomy patients on YT are young, active and vibrant. I wonder how these young people get colon problems so young. Where are the older over 50 or 60s patients?

    • @leighpike6572
      @leighpike6572 3 месяца назад

      I'm over 60, relatively new to ileostomy, due an exploded appendix and damage to my bowel in that area, as for younger people with various digestive tract issues, maybe better diagnosis or understanding of our health or something

  • @rudynewman2040
    @rudynewman2040 4 месяца назад

    Oh! This is Dolores Newman, I am on Rudys cell.

  • @KkPoff
    @KkPoff 4 месяца назад

    I have an open sore about the size of a half dollar that was under the outer edge of the flange. I just saw the doc and pharmacist and they told me to put Benadryl cream on it now that the flange doesn't touch it. I can't afford it yet so I'm sticking to my stoma powder and skin barrier wipes.....for now. But I've put a bandaid over it to keep my clothes or bag covers from rubbing. I'm still trying to get my VA insurance to get me away from Hollister. I am allergic to adhesives and the bags hang too low and the clip is a nightmare!

    • @susanholbrook4185
      @susanholbrook4185 4 месяца назад

      I use bandaids also below the stomach if it seems red.

    • @susanholbrook4185
      @susanholbrook4185 4 месяца назад

      Bandaids are great. If it does not stick use a small belt to keep it in place. Maybe change everyday for a while.

    • @KkPoff
      @KkPoff 4 месяца назад

      @@susanholbrook4185 the belt I had is too small. The VA is ordering all Coloplast products now I'm so happy!!! My sore is almost completely healed up. I told her about me watching Maggie's videos and she was highly impressed!! Ty ty ty ty Maggie!!!!!

  • @DianePicard-e3n
    @DianePicard-e3n 3 месяца назад

    Hi Maggie, so far I’m lucky with my stoma I’m waiting to receive a surgery to remove the rest and close up mu anus.
    I’m a bit stressed about it scared to have complications. Can you tell us how it went on your side. Thank you

  • @joannemagee4059
    @joannemagee4059 4 месяца назад

    Enjoy your shares.

  • @sungee3333
    @sungee3333 4 месяца назад

    Hollister and adapt quit making remover spray is there a brand you use or can still get.

    • @tessstarowen6579
      @tessstarowen6579 4 месяца назад +1

      Coloolast makes an adhesive remover spray. The product # is 120105.

    • @LetsTalkIBD
      @LetsTalkIBD  4 месяца назад +2

      Convatec also makes one! It's part of their Esenta line (just FYI I am often sponsored by them)! Many brands make their own versions of adhesive removers!

    • @sungee3333
      @sungee3333 4 месяца назад

      Thank you for replying. Im an airplane glue user so my skin is toast. Maybe its byrum my provider. First they quit making adhesive spray then they quit making the remover.

    • @dyskover
      @dyskover 4 месяца назад +1

      I buy Skinister from amazon

    • @sungee3333
      @sungee3333 4 месяца назад

      @@tessstarowen6579 thanks

  • @natashaw401
    @natashaw401 4 месяца назад

    How can the stoma be switched

  • @KerrynS_NZ
    @KerrynS_NZ 3 месяца назад

    As we get older our skin becomes more fragile and able to tear more easily too, especially if we have a medical history that has involved lots of steroids in the past for IBD. My skin is no where near as durable now as it was with my initial ileo in my early 30s than now in early 50s

    • @LetsTalkIBD
      @LetsTalkIBD  3 месяца назад +1

      You are absolutely right! I do fear what will happen as I get older with my ostomy care. I hope you are managing alright!!

    • @KerrynS_NZ
      @KerrynS_NZ 3 месяца назад

      @@LetsTalkIBD I'm pretty good thanks, I didn't need adhesive remover for many years but it's a must now, and I need to use elastic tape on the outer edge to spread any potential tension. Plus extra care with tape edge positioning hat to reduce any micro tearing of skin. I too worry that I'm only in my 50's now and how much more fragile it could become, it's all fine closest to stoma but the outer edge of that becomes vulnerable to tension as we move.

  • @queenofdramatech
    @queenofdramatech 4 месяца назад +1

    Question, can a stoma ever go naked like in a shower?

    • @MaryEllenWilliams-hw4nr
      @MaryEllenWilliams-hw4nr 4 месяца назад +1

      Yes. It can be a little messy.

    • @DeborahBaxter-k2v
      @DeborahBaxter-k2v 4 месяца назад +2

      Yes , I shower daily with my stoma . I just don't let the water hit directly on Sara my stoma.

    • @queenofdramatech
      @queenofdramatech 4 месяца назад

      @@DeborahBaxter-k2v thank you. I had never heard about that before. I have UC and some day if things go south might need one. I was curious. I love baths so maybe bagged up would work. No need to introduce more bacteria right!

    • @dianabrown833
      @dianabrown833 2 месяца назад

      I take both showers & baths, but I am very careful not to let much water by my stoma opening as water quality here is not good.

  • @Birdsandnature2
    @Birdsandnature2 4 дня назад

    Anal fistulas suck I get them often with ibs

    • @LetsTalkIBD
      @LetsTalkIBD  4 дня назад

      IBS (Irritable Bowel Syndrome) would not cause fistulas - are you referring to IBD (Inflammatory Bowel Disease which includes Crohn's and Ulcerative Colitis)?

  • @BELLADAWN1
    @BELLADAWN1 4 месяца назад

    Im allergic to colaplas

  • @edgrabousky9995
    @edgrabousky9995 4 месяца назад

    The skin around my stoma is read and bleeding.

    • @susanholbrook4185
      @susanholbrook4185 4 месяца назад

      I do the usual Care. Clean and definitely powered lightly. If I see redness I use Neosporin around the stomach and in red areas. I always use a small belt keeps all things on.

    • @susanholbrook4185
      @susanholbrook4185 4 месяца назад

      Be creative. .

    • @edgrabousky9995
      @edgrabousky9995 3 месяца назад

      I don’t know how you do it! I don’t know how I’m gonna be able to handle this ostomy item. I can’t put dress clothes on because the bag bulges at my waist. I’ve had to leave two events to go and try to empty the bag! my prayers go out to you for being such an inspiration!

  • @elekay312
    @elekay312 4 месяца назад

  • @malinnesse3876
    @malinnesse3876 4 месяца назад

    ☀️🌼

  • @chrisjohanson9284
    @chrisjohanson9284 4 месяца назад

    ♥️🙏😊☀️🌟👍🌺

  • @dyskover
    @dyskover 4 месяца назад

    Did you try WD-40? I kid.