Help please. I am new to this world. 5 weeks. This has been my skin from the beginning.
Could it be I'm allergic to Eakin ring? Stoma powder? What have you done when your skin looks like this? I'm in so much pain and mentally tapped. I've met with ostomy nurses and still, this is what I'm dealing with :( 😢
Any advice or tips would be greatly appreciated. ❤️
Hi Mandi. Welcome. I will cut right to the issue since you are in dire need of advice.
Skipping the blah blah yadda yadda for later, I want you to know answers are coming soon. And likely questions for more details, too.
At 5 weeks you should not be in much pain. Discomfort, yes, as you heal. Pain from the stoma skin you mean or elsewhere? Explain more.
Your stoma nurses are not very good if they can't help you with this. We can, of course, but they are your front line source and it sounds like they aren't very experienced.
The photo, to me, shows a close-to-the-skin stoma. That could be your problem although you mentioned no leaks, this could be an allergic reaction.
Had you had leaks, this is exactly the irritation you find. Poop touching the skin. From leaks.
Now do tell, how far out does your stoma stick out?
It should not be flush.
Are you having leaks that are causing this?
Have you tried other brands of appliances? If so, list them.
Help is on the way.
Sit tight.
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To me, it looks like you're having a reaction to the Eakin ring or maybe the powder, depending on where you put the powder. Your irritation appears in the picture to be smaller than the whole wafer (sticky part that attaches to your skin) area and concentrated on an area that looks like the size of the barrier ring/seal. Now, if you just put powder right where your ring/seal goes, you'll have to eliminate which one it is by trial and error. Since you didn't mention it, if you have output sitting under your setup, then you have an adhesion problem with your equipment, and it's allowing output to sit on your skin, eating your skin raw. I've never had anything close to skin looking like that. I'd be trying something until I got it fixed because something isn't right.
Hi Mandi,
It's hard to tell from a pic, since there could be so many things wrong, but I enlarged your pic and brightened it up a bit. If I had to guess, I'd say you've got fecal erosive dermatitis. That's the fancy way to say your barrier ring isn't sealing well. You have a flush stoma, which isn't a good way to start out your ostomate journey, but hopefully your stoma will extend a bit more and make things easier. I'm surprised your ostomy nurse isn't all over this, and although there's a lot of stuff they can be clueless on... this isn't one of them.
You didn't give us details on how frequently you change your barrier or why. The first thing you need to do is figure out what's going on with your ring. Is there output under the ring when you take it off, meaning output between your skin and the ring... or is it just red and angry? If no output, then you probably are having an allergic reaction to the ring material. But since the redness isn't an exact circle copy of the shape of the ring... I don't think it's that. But get some rings from different vendors to have on hand. If you do find output under the ring, you've found your problem. You definitely need a convex barrier with your stoma, so if you're not using one... get you some!
As for the pain and inflammation... it's not going to go away until you find and fix the source. For now, what you can do is get some Domeboro soaks... they're packets of powder that come in a box and can be found at most drug stores or online. I know CVS has them, but not sure of the other chains. They may have a generic, which is fine, just make sure it's an Aluminum Acetate Astringent powder. You mix one packet in 2 ounces of water... it says 4 oz, but 2 works better. You soak a couple of paper towels in it and then place them over your stoma. I'd go about 4 towels thick and let it sit there for at least 15 minutes... longer if you can. This will calm your skin down. After you remove them, gently wipe your skin with warm water on a paper towel, and then dry your skin completely. When you apply your new ring, make sure you get it as close to your stoma as you can, leaving as little skin around it exposed. I know it's hard when your stoma is flush, but do the best you can. It helps to warm your skin and the ring with a hair dryer (don't go nuts) and then install the ring. After that, install your barrier and hold everything with your hand over it to keep your body heat in. Some do this for a minute or so and then install your bag and attach your belt. Cinch your belt up snug, but not too tight or it will distort the barrier and you'll have a leak.
Now the important stuff. You need to remove your barrier/ring BEFORE it leaks again and change it again doing the same thing I explained above. When you do change it, make sure to look at the ring and your skin very carefully when you remove it. Note where your skin under the barrier is wet and put a clean paper towel over it to absorb the wetness. Then look at the paper towel and see what color the liquid is that's been absorbed. It should be obvious if it's output or just your skin weeping. If it's your skin weeping and you're sure it's not output, then just keep doing the Domeboro soaks each time you change your barrier and change your barrier BEFORE it leaks. This will get your skin to heal. Don't sleep on your back... sleep in a recliner if you move around a lot and can't be sure you won't sleep on your back. I'd explain what you're doing to your ostomy nurse to keep her in the loop.
And... if you find there's no output under your ring, just clear wet weeping skin... ditch the Eakin ring and try someone else's. I tried the Eakin ring based on everyone's recommendations and my skin hated it. Made my skin itch and crawl after the first hour wearing it. Don't be afraid to experiment. You can get free samples from all the major vendors and your ostomy nurse should have a bunch as well.
Let us know how you're making out!
;O)
Hi Mandy,
Sorry you are going through this. I had reactions to the Coloplast adhesive rings. I also switched to a 2-piece Hollister setup as my stoma is almost flush with the skin, and that helped me.
What I see when looking at your picture is a stoma that is recessed from your abdomen. To me, it looks like what you need is a revision of your stoma. Ideally, a stoma should protrude from your skin, not be even with the surface or recessed. I don't know if you will be able to get a proper seal that will stick to prevent this irritation from happening because your output is always going to be in contact with the skin around your stoma, and will work its way under any flange you apply. I would talk to your surgeon about this, and consider having a revision, preferably with a different surgeon. I wish you luck dealing with the irritation, and you've gotten great advice on how to deal with it, but I just don't see it solving the problem long term.
Terry
I just found this group. I have never been in a forum like this. This sounds like an amazing group!
In the beginning, I had some rash areas, and my home health nurse introduced me to MOM (Milk of Magnesia). She had me use it as a topical lotion. She said many years ago it was a well-known, well-used cure. I'm not saying to try this, but I did, and it worked. I also asked my ostomy nurse. I live in a very rural area... this was a godsend for me.
I would definitely try a different ring because you may be allergic, or it may not be working for you. Do you use a convex appliance? Generally, with stomas close to or at skin level, convex appliances are used. They help push that stoma out to help the output not stay on the skin.
Crusting is also a helpful thing to learn for skin issues. It has helped me immensely. You basically squirt on some stoma powder, wipe or blow away excess powder, and then use skin barrier swabs (dab with them) or spray. If the skin is really bad, you can do a couple of layers of this. Just make sure it doesn't get chunky or flaky, or the appliance won't stick.
Keep up with the ostomy nurse because they can give you different rings to try and should be able to help you troubleshoot.
Thank you. I’m at my wits end. We tried other appliances. My stoma does not stick out at all in fact it’s almost a giant hole. So poop just sits in it, I’m having to ch age the bag daily. Because it starts burning so bad I can’t stand it.
My nurses are trying but you’re right I don’t think they are that experienced. In fact one of them suggested I have my doctor redo my stoma. Wish it was that easy. Because it’s not permanent my doctor does not want to revise it.
I’m mentally tapped. I don’t want to live anymore. Staying at my sisters this weekend because I’m afraid of my own mental state at this point.
Also I have a vaginal fistula surgery coming up so no bag end in sight. That mentally about breaks me. I can’t imagine anymore pain or discomfort
I'm in a two-piece Hollister too. My skin has been inflamed and burned since I got my ileostomy. They left me in the hospital burning and didn't check it for days, so it's been a problem since the beginning.
I agree. I asked my surgeon, and he said he would not redo it because it isn't permanent.
Fudge him Mandi. He messed u up this way. Wanna get him motivated? Simply ask him again and if he gives u that lame excuse, just say
" will see what my lawyer says abt this" .
What a jerk this doctor is. How can he not see he messed this up? He created a crater like u see on the moon..I would find another surgeon...sue this one...if he refuses again.
Def. See a lawyer.
Who is doing that vag surgery? I hope it's not the shithead who left your stoma in a pothole.
It is the same doctor. I have switched surgeons 3 times.
Oh snap. So while he's "in there," he can't pull the stoma out a bit? Seriously, what is his freaking problem not doing that?
It is the same surgeon. :/ I trust him, I'm not sure why my stoma is so low
My stoma is flushed, if not even below the skin. I use a barrier ring and it has leakage under it every day.
My ostomy nurses are trying but are puzzled with how to help, trying different appliances.
Ok. I get the trust thing. Very important to have that.
So I must ask... the very first time you saw your stoma... if you were capable of seeing it... was it ever sticking out? Extended like an inch out of you?
Because that is where it should be, and it's a no-brainer whose fault it is that it's not sticking out originally.
Mandi, you're in a dark place emotionally, and I'm glad you're taking measures—being with family, openly talking here—to protect yourself. One more place you must talk about it is in your surgeon's office. They need to hear the effect that your stoma care issues are having. The surgeon's reluctance to do a revision is understandable given your ostomy is temporary, but your healing and comfort should be a priority.
Meanwhile, I'll suggest a product that helped my skin to recover when my barrier was actually holding output around my stoma and causing skin breakdown. For a couple of weeks, I applied a Brava® Protective Sheet before adding a barrier ring and the wafer. It sealed the area against the output and created a strong seal with the barrier ring. It really worked for me. You can phone Coloplast and ask for samples to see if the product is helpful to you.
Sending you good vibes for courage as you work your way through this❣️
Get into the shower with no bag on and clean the area really well after using adhesive remover wipes, but make sure you wash off the adhesive remover first. Shower and clean up the area really well with Ivory soap or Dial white soap.
Use Domboro soaks you can get at any pharmacy. Mix according to directions and get a paper towel wet with the solution and wrap it around the area for about 15 minutes. Then wash off the area again with soap and water from the sink.
I am allergic to Eakin rings but can use Hollister Cera rings or Adapt rings.
Try getting samples of Convatec ActiveLife one-piece pouch, but get convexity for the flush, flat stoma. It's the only pouch out there that offers hard convexity and is the only one that holds up for my flat stoma.
Also, don't put the ring on the stoma but put it around the bag hole instead.
You can use the Domboro soaks until the area heals every time you change. With this red rash, you may need to change more often, if not even daily.
It's a crapshoot with supplies. We can be allergic to anything, including adhesive removers, barrier wipes, rings, and adhesives on our pouches. I can assure you that once you find the right products, it's not going to be all this bad.
I think I got this reply to the right person. I also have very sensitive skin. A couple of ostomy nurses insisted that I use an adhesive ring, I tried every kind of ring out there, same reaction - irritated skin, lots of itching and much discomfort.
I stopped using the rings all together. Hollister 'Adhesive Remover Spray' to release the flange, then 'Mountain Rose Herbs' [supplier - out of pocket cost] pure Witch Hazel on a gauze pad on the skin around the stoma. Gently dry with a fresh dry gauze pad. Apply the flange once the skin is completely dry - with no additional adhesive.
My skin looks and feels soft, smooth, with no irritation at all.
Hi Mandi,
After reading all the posts, I have to ask... why exactly do you trust this surgeon? Trust him to do what? Your stoma is problematic, and it's his creation. You'll never get relief for the skin around your stoma if your stoma is below skin level. Your output will always want to seep under your barrier or ring. That's why stomas are always supposed to be above skin level. When it's even with or below skin level, the ostomy products don't have a chance of working, as they weren't designed for such a situation.
Why your doc won't fix his mistake is troubling. He either doesn't understand the conditions he's created for you to live with (screams of lack of experience with stomas) or just doesn't care (which is even worse). The fact that you're getting reversed at some point in the future is irrelevant. What's worse is that fixing it is very simple to do and wouldn't take him 15 minutes. They literally unsuture the stoma from your skin, pull it out a bit more, and re-suture it. Why he wouldn't do that for you is incomprehensible... unless you're not conveying the severity of the situation to him. Then it's on you.
If you have told him about your pain and discomfort and he isn't interested in correcting it... you really need to find another surgeon. And ask yourself why exactly you trust this guy, as I'm not seeing any obvious reasons.
For now, I'm not sure what to tell you. As I said, ostomy products aren't designed to work with a stoma that's at or below skin level. A convex barrier should help, but could also make things worse if you don't cut the hole properly and the convexity of the barrier instead pushes your stoma deeper into your abdominal wall. But cutting it any larger than your stoma will allow your output to continue irritating your skin. I wish I had some better options for you, but you need to have your stoma corrected... even if it's only a short time until you're reversed. You might want to give Nu-Hope Labs a call and see what they recommend. They have some unique solutions for problem ostomates... and may be able to help. But still find a new surgeon. Really.
;O)
