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 RU-vid 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! ❤❤❤
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.
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. ❤😊
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!
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.
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.
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. :)
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
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.
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.
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
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.
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.
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.
@@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. 💗
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!
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.
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.
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.
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 😅
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.
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!
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?
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
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!
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.
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.
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
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.
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.
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 :( .
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
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 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.
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 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!!!!!
@@user-oi4fg4mb2x 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!
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
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!
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.
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.
