Struggling with Ostomy Skin Issues - Need Advice

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LFBlas
Mar 21, 2023 8:02 am

Hi everyone! I'm new to this forum and I'm so excited to have found a group of people that I can talk to. I used to attend an ostomy support group once a month at the Mayo hospital here in Phoenix, but I kinda stopped going. The Mayo has been my home since 2018. Long story... I've had Crohn's since 2005. Had a flare up about once a year, but I always got through it. I got married around that time and in 2015 we got divorced. I was in shock that I didn't get a flare up since they're always induced by stress. I have three beautiful daughters and we have 50/50 custody so it works. I met my now husband in 2016 and was in the best shape physically, emotionally, and completely in remission with Humira. I got married in 2018 and it kills me to say that I spent our honeymoon in bed. I had started getting a flare up and it was out of nowhere. Yeah, maybe blending two families together stressed me out. Maybe planning a wedding. I've been admitted to the Mayo 16 times between 2018-2022. And these were 7-10 day stays. After four surgeries and my weekly Humira, I'm back to life. Except one issue. I've used barrier rings since my first ileostomy in September 2019. I never had any issues and my bags would last forever. I had to use a convex back because my stoma was in a valley. But then that stoma started causing many obstructions. It became so tiny and narrow that all my food was getting stuck. So finally I went in for my fourth surgery in May 2022 and they cut some intestine to make it narrow again, but when I woke up it was on the other side! I had a huge infection on my hip so they needed that to heal and completely changed my stoma to the other side. So now I have a hole on the other side. My daughters can't tell which one is my belly button lol. But ever since I switched sides, I've had horrible skin rashes. Literally for almost a year. My bags last at the most two days. I'm always leaking. I've tried everything. I know all the tricks. From the 17 3M 5050 skin barrier wand on Amazon to the little paper ones, to the spray, or the barrier paste, I've even bought TWO laser wands that help heal skin. My skin starts weeping water constantly and my bags just don't stick. I've taken yeast medication. I have every cream you can imagine. Steroids. I only wash with Ivory. I clean it religiously so no stool is left during my bag change. The ostomy nurses and dermatologists at the Mayo haven't even been able to help me. I even wear a belt. I hate wearing a belt. I never had to before. It's truly so depressing. I'm starting to realize it's probably because my stool is mostly water. I rarely have "applesauce looking stools". I think it might be because I forget to eat sometimes. I know you're supposed to eat 6 small meals a day. But I don't think that's even possible. I finally started working again after 6 years. Everything is so great. But the rash is ruining my life. But I keep going because I finally can live every day outside of my bed crying in pain. So if you ask me if I'd rather have a rash or weigh 89 lbs from Crohn's disease pain, the first option will always win. Please, please, if you have any advice I can get, I'd truly appreciate it. Sorry for the long message.

w30bob
Mar 21, 2023 10:22 am

Hi LF,

Welcome aboard! Hang in there girl... the Cavalry is coming!

I had the exact same skin problem you have, from what you describe. Nothing I tried worked and every dermatologist and ostomy nurse I talked to was stumped (and I saw a LOT of them). I finally found the cure from an ostomy nurse who worked at Nu-Hope, as I called them to inquire about their adhesiveless barrier, thinking it would be the only thing I could use going forward. The nurse there was so nice... she explained to me what I'm about to explain to you. If you've already tried it then I apologize for wasting your time... but you didn't mention it in your post. So here's what she told me.

Go buy some Domeboro (aluminum acetate) powder pouches at your local drug store (they're in the First Aid section), and get some Apple Cider Vinegar.

When you change your barrier here's what you do

Get two small bowls and in the first one mix one packet of Domeboro powder with 2 oz of warm water. Mix it up well with a spoon and then soak 4 quarters of paper towel in it. I buy the paper towel that's all white and already perforated for 4 quarters when you tear it.

In the second bowl mix equal parts warm water with Apple Cider Vinegar (1 oz water and 1 oz vinegar), mix well and soak 4 quarters of paper towel in it.

2 oz of each will make enough to soak the paper towel and then some, so this way if you have output while changing and make a mess you'll still have enough of both left to soak 4 more quarters of paper towel and try again.

Ok, with your two bowls ready

Remove your barrier and clean up like you normally do. Wash the area with only water, no soap (as normal), and pat dry with paper towels.

Ring out the 4 quarters soaking in the Domeboro, but don't wring it all out... leave the paper towel nicely wet, but not dripping wet. Apply the 4 quarters of paper towel soaked in Domeboro equally around your stoma covering all the irritated skin. Press the paper towel into your skin to make sure it's making contact with all the irritated skin. Leave this on for a full 10 minutes... longer if you can, but for me 10 worked just fine, and my skin was a friggin' mess. If during that time the paper towel seems to dry out just take a spoonful of Domeboro from the bowl and lay it along the top of the paper towel and it will work its way down re-wetting the whole thing.

After 10 minutes remove the paper towels and pat the area with clean wet (water only) paper towel to remove any residue.

Next apply the vinegar/water soaked paper towels the same way, covering everything irritated. It may sting a bit, but it just lasts a few seconds... and then get crazy itchy! That means it's working! Do NOT scratch no matter what. You can pat it with your hands if that feels better... but do NOT scratch it! Leave this on for at least 10 minutes as well.

To pass the time for the two 10 minute intervals I have my tablet nearby and I just surf the internet and time flies by. Without having something to do it would seem like an hour!

After 10 minutes remove the vinegar/water paper towels and DO NOT wipe your skin off.

Dry your skin thoroughly... I use a hair dryer on low

Apply a bit of ostomy powder on the irritated skin, but don't go nuts.

Apply your barrier ring and barrier as you normally would. I cut my barrier's adhesive bandage section down around the outside as much as possible to keep as much skin exposed to the air, but do what works for you.

Repeat this process EVERY DAY for 5 or 6 days or until your skin gets better. For me it only took about a week and my skin looked great. I really couldn't believe it, as I was at my wit's end trying to deal with that red weepy skin that nothing stuck to.

Once your skin gets better you can go longer on your change interval, but keep doing the soaks each time. Once the itching stopped after applying the vinegar soaks I started increasing the amount of vinegar while reducing the water, and now use it full strength without any stinging or itching.

I still do the soaks to this day because I never want to deal with that red weepy skin again... so it's been about a year... but I shorten the time I apply the Domeboro and vinegar soaks to only 5 minutes each time I change my barrier, which is every 4 or 5 days now. And I haven't had any irritation come back.

Hope this helps!!

Regards,

bob

Oh... almost forgot... Domeboro is like $18 a box, but if you go to their website www.domeboro.com they have a $4 coupon that you can print out and use every time you buy a box... and if you're a CVS Extra-Care member they send you a 40% off one item coupon electronically every other week via email. So I download that coupon to my Extra-Care card and get the 40% off and the $4 off from the coupon... so it ends up being like $9 a box.

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SallyK
Mar 21, 2023 10:39 am

Welcome

Axl
Mar 21, 2023 11:00 am

https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=14546

Hello L

Terry (delgrl525) had some recent success with some simple products regarding inflamed skin. Scan through this to see what she did, essentially just putting a piece of flange extender between the skin and the bag flange.

Charleston man
Mar 21, 2023 11:31 am

Hi Lf, welcome to the site. As you can see, it's a place with a wealth of information. It has helped me over the years. I have an ileostomy for 13 years, coming this April. I had a temporary colostomy before that. I also was using Ivory soap to wash with, but my skin would dry out from using it. My then Ostomy Nurse recommended that I use Dove Sensitive Skin soap instead, and for me, it works much better as it doesn't dry my skin out and it doesn't have any oils in it to hinder my flange from coming loose. She also recommended using stoma powder to help with the rash. Now, saying that it works for me, she also recommended that I continue to use it even if I don't have any rash. I also use the skin prep wipes to help hold the flange. Granted, it works for me, but it may not work for you. Hope you find relief soon.

 
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LFBlas
Mar 21, 2023 12:49 pm
Reply to w30bob

You are truly a life saver. Thank you so very much! I'm doing this today. Thank God there's something out there that has helped you. It gives me so much hope. Interestingly enough, on one of my visits to the ostomy nurse, she put some poison ivy towelette on my irritated area. I really wonder if that might be the same ingredients. She has told me it worked wonders. But I never bought them.
I'm trying yours first. I can't thank you enough.

LFBlas
Mar 21, 2023 12:54 pm
Reply to Charleston man

Thank you so much for taking the time to respond. I've done exactly that except I have issues with the powder causing the skin prep to not be as sticky and then the barrier doesn't stick. So do you pat on the skin prep on the stoma powder? I feel like I remove most of it and it beats the whole purpose. That's why I end up still irritated. I love the 3M 5050 skin prep wand. I was getting them on Amazon but I can't get them anymore. They've disappeared. I should give the stoma powder a try too. Or maybe the fungal even?

LFBlas
Mar 21, 2023 12:58 pm
Reply to Axl

Thank you Axl. I'll look her up. That sounds interesting. Wow, I've been on here for a day or two and I already have three ways of treating it. Where were you guys a year ago? Lol

ron in mich
Mar 21, 2023 1:16 pm

Hi LF, welcome to the site. I've had my ileo for 30 some years now and I went through having a stoma like you described that blocked most foods I ate. But then I had resection surgery 5 years ago and my stoma moved from right to left side. I've never used soap around my stoma, it's always been warm water and a soft cloth, and dry the skin thoroughly. I use Convatec 2pc system and get 3 days wear time and change the morning of the 4th.

Bob 48
Mar 21, 2023 7:54 pm

I use powder and barrier spray works better for me than the wipes, even when I squeezed the wipes to cover the powder it didn't work as well for me. Have you ever tried Metamucil powder to thicken up stool? Everyone is different but it really helped me.

TerryLT
Mar 21, 2023 9:13 pm

Hi LFB, welcome to the site! I answered your question about skin issues in another post, which I was going to refer you to, but it seems to have disappeared from the forum. Strange! Anyway, I'll just repeat what I posted in case you didn't see it. My recent raw skin problem was solved by using the Salts brand of flange extender. Instead of using it for its intended purpose, I cut a piece to fit the size of the raw area, applied it, and then applied my normal flange as usual. These flange extenders are infused with aloe, which worked wonders for me. There was good healing with the first application, and by the second time, it was completely healed. Salts also make barrier rings infused with aloe, but my ostomy nurse wanted me to try the extenders as they are much thinner. I just called the company, and they sent me samples, had them in a few days. It's the only thing that worked for me. Good luck!

Terry

Ostomate & woundr
Mar 21, 2023 11:45 pm

First and foremost, don't give up. There are a lot of good suggestions here for you to try because every time I see a rash in my entire career as an ostomy nurse, it has a slightly different cause. Photos would have been helpful but not necessary in every case.

You mentioned derms and wound care and ostomy care nurses. Have you seen an allergist?

I cannot tell you how many different patients I have seen over the years, literally cannot count them, who have had some type of rash and could not solve the issue with derms and other types of specialists. One of the things I found is that an inhaled allergen can be expressed on your skin. A consumed allergen can also be expressed on your skin. It may not be "contact dermatitis," which has to do with touching something like poison ivy or something you're highly allergic to. It is natural for physicians to think that something that is showing up on your skin started at your skin, but your skin is a reflection of your entire body and is the largest organ in the human body.

gentlejohn
Mar 22, 2023 12:54 am

You gave us a lot of information. On broken skin, it is recommended to use stoma powder and a liquid skin barrier. When I had problems, I used Cavilon. A barrier will not stick to weeping skin. A convex extended wear bag with either a thin ring or thick ring should provide a longer seal. If you are still having problems, you need to get back with your ostomy nurse or find another more experienced ostomy nurse. After you see an ostomy nurse and there is a suspicion of allergy, I understand people have used Flonase in the peristomal area. That is a liquid that should not interfere with the barrier sticking if used on dry skin or before using powder and a liquid skin barrier.

PS Welcome to the forum.

LFBlas
Mar 22, 2023 4:11 am
Reply to gentlejohn

Flonase?!? Really?? My husband uses that for his allergies. I'm fed going to try that. Ty ty ty!!

LFBlas
Mar 22, 2023 4:15 am
Reply to Ostomate & woundr

I absolutely think it's a skin contact rash issue. My gastro mentioned contact dermatitis from the photos I sent. And it only spreads around my bag and my inner thighs and TMI but sometimes in my private area. I think seeing an allergist would be very smart. Thank you for that. I was just telling my daughter that maybe it's the adhesive itself or the bag. Or something I'm eating. I don't know. But I think an allergist is my next step. They took samples when it was in my private area and it was negative for viral or bacterial infection. Everything I googled points to either yeast infection or contact dermatitis. Thank you for taking the time to give your input.

LFBlas
Mar 22, 2023 4:17 am
Reply to TerryLT

Thank you so much!!! I haven't even heard of that. I'm contacting them tomorrow for samples or maybe they're on Amazon or Edgepark which is where I buy my ostomy supplies.

LFBlas
Mar 22, 2023 4:20 am
Reply to Bob 48

I've taken Imodium and it either does nothing or if I take more, it completely takes over the bag from the thickness, clogs it, and it leaks everywhere. I haven't tried Metamucil though. I started taking probiotics with my liquid IV powder and that seems to help. But I'll definitely try the Metamucil. Ty!!!

LFBlas
Mar 22, 2023 4:21 am
Reply to ron in mich

Thank you for responding. Sometimes I skip the soap because it just adds to the bag not sticking. But I should try that more. Less is better sometimes. Thank you!!

Bob 48
Mar 22, 2023 4:50 am

Imodium used to help me somewhat when dealing with UC and J-pouch after that but not much at all now with the ileostomy. Metamucil powder though has been a game changer for me now, everyone is different but I hope it can help you too.

CrappyColon
Mar 22, 2023 5:47 am

Cleveland Clinic patient here, but they share a lot of my tests with Mayo trying to figure out what the heck happened to me and why this particular condition is rising rapidly in young women (I was in my early 20s when I started getting sick). My ostomy nurses, who I saw A LOT, once a week or more in person and then in between pictures and phone calls for the first 7 weeks after my ileostomy, told me no ivory and to use the orange Dial soap. Don't remember why. I saw Bob mentioned the Dombero soap too. They used that on me during visits and I still have some at home because it works if my teen son does the not listening thing and gets poison ivy again. Sometimes I saw the same ostomy nurses (of course I had my favorites) but they all had their own different tricks and ways of doing things too and would always say each patient is unique. Did you like your laser wand/did it help? I need to schedule a dermatologist visit but I'm really tired of tests and appointments right now and my goal is to get through the 2 I have left this week and then just not see anyone in a medical facility for a bit.

gentlejohn
Mar 22, 2023 1:37 pm
Reply to CrappyColon

Yes, Cleveland Clinic is where Enterostomal Therapy began in the 1950s. They have a long history of dealing with stoma problems.

w30bob
Mar 22, 2023 2:12 pm
Reply to gentlejohn

Interesting reading... enjoy!

;o)

https://www.pelicanhealthcare.co.uk/history-behind-the-stoma/

TerryLT
Mar 22, 2023 10:55 pm
Reply to LFBlas

Salts is a company located in the U.K. I know they are available to us here in Canada, so I hope you in the U.S. can get them too.

Caz67
Mar 24, 2023 8:41 am

Welcome aboard. Lots of good quality advice from people who actually have had the problems rather than learning from those who read it in a book. XX

LFBlas
Mar 24, 2023 9:27 am
Reply to CrappyColon

Thank you so much!!! I'm ordering this soap right now on Amazon. For some weird reason, ever since I wrote this post my rash has been going down. But I think it's because I've started eating more and there's not as much watery stool. Whatever reason it may be, I'm not complaining. The laser wands I got actually do work. I just don't have the time to use them when I'm changing my bag because my stoma is always active. Rarely is it not. But I've used it on the outside areas once my bag is on and I've noticed a huge difference. My stoma nurse said to eat a marshmallow 20 minutes before a change. It has worked lol. But I can't thank you enough for taking the time to respond.

LFBlas
Mar 24, 2023 2:56 pm
Reply to Caz67

Thank you so much for your support. I'm trying to soak up all this information and try everything one at a time. Plus, I love having people to talk to.

JM_IN_MD
Mar 27, 2023 1:19 am
Reply to LFBlas

I'm thinking that your leak might be happening more from moisture that has worked its way under your skin barrier. The thicker stool may be causing the barrier to detach easier than with the liquid stool but if you get rid of the moisture and get a good seal, it should cut down on your leaks. After you apply your pouch, do you hold it onto your skin for a minute or two which will help you get a better seal. When you push down, and if you hear it squish, it's likely some moisture has found its way under your seal. When that happens the wear time drops to less than a day. You may need to also change your pouch once a day or so until you get the skin problem solved. I don't remember if anyone has already mentioned this but there is a powder called Nystatin which is by prescription which I have used at times when my skin was weeping from a yeast infection. Yeast can grow on your skin under the barrier and it will cause moisture which makes the skin red and moist. If the other suggestions don't work, you may want to ask your Dr, and try it out under your barrier. Very lightly apply. Good Luck.

LFBlas
Mar 27, 2023 2:56 am
Reply to JM_IN_MD

Thank you so much! I do have nystatin. I'll try it out again. Like I said, I have it all! And I've tried it all. Right now what helped was the poison ivy dissolving tablets. I usually press down on the barrier after I put it on and blow dry it with semi-hot water. I've taken yeast meds too. Oral and creams. I'm at a point where it is what it is. I can't keep letting it run my life. I'll keep doing my best and continue those soaks and we'll see how it goes. Thanks again for your input.

LFBlas
Mar 27, 2023 2:57 am

Sorry. I meant I blow dry it with semi-hot air, not water. Lol.

LFBlas
Mar 27, 2023 2:57 am

Sorry. I meant I blow dry it with semi-hot air, not water. Lol.