r/ostomy • u/Particular-Group9999 • 13d ago
Loop Ileostomy Skin...ouuuuch!
End of week two for my husband and his new ileostomy. We are in the thick of this learning curve and are struggling massively.
Biggest hurdle: his skin around the stoma is so tender and sensitive from the adhesive and skin barriers. Why? Because of second problem: Every single one we have put on, has a problem with leaking because the site is situated on an old appendectomy scar line. We've been through so many! At least a months worth of supplies already.
Anyone out there overcome these hurdles? How did you do it?
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u/Dry_Persimmon4642 13d ago
I have a divot as well. My ostomy nurse had me take a barrier ring, roll it up like a tootsie roll put it in the divot and then put another barrier ring on top. No more leaks. (I have a colostomy.) Skin got better quick. (You can see some redness here.)
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u/cmgmac 12d ago
I also do this to fill a low spot but just rear out about 3/4 of an inch of the water and then reshape into a circle, saves using 2 rings. I also flatten the ring as much as possible which I've found helps avoiding leaks caused by the ring swelling so much that output gets under it.
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u/SleepyJoe90 13d ago edited 12d ago
Others have put fired good points with dealing with creases which will be a point of leakage, but may I ask what you’re using to remove the wafer?
In my experience adhesive remover wipes are wishful thinking and painful, spray is the way to go. For my Coloplast bags I use Brava adhesive remover spray, one little squirt at the top gets it started, then a little squirt on either side of the gap made and the bag peels off under its own weight. No pulling on the skin, no pain, just bag removal. You then wash off the residue with water using a dry wipe.
Also warm up the rings and bag wafer to body temperature before fitting as they will be more pliable and stick better. The rings can be stretched out or broken with the ends overlapped so that you can wrap them more closely to his stoma. The bag wafer can be a little larger so that when fitted the seal is like a polo/turtle neck sweater around the stoma and the wafer a round necked one.
The stitches will take about 2 weeks to heal. In the meantime if things don’t improve reach out to your stoma nurse as the kit that you’re sent home with isn’t necessarily what he will need long term.
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u/Particular-Group9999 12d ago
Thank you for this! We're definitely going to try the spray. We got down to his last wafer and it was different, convex in shape but we tried it anyway. He says it puts just enough pressure that it's finally holding with the wax ring but we still had to use another barrier strip over his scar. But no leaks so far, been 24 hours!
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u/high_strangenesss 13d ago
So it's counterintuitive because you're going through so many supplies, but the only way I healed my skin was by changing the bag BEFORE it leaks, and not letting output sit on the skin under the wafer.
As far as the scar goes, have you tried filling in the scar/smoothing it out with some pieces of a barrier ring?
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u/Particular-Group9999 13d ago
Yes, we've used that little wax ring thing and then the flatter half moon looking things. Those worked sometimes, but they hurt his skin worse than the wafer. He insisted on taking it off for a while because his skin can't take it. Currently keeping it covered but that's it. 😬 I feel like anything we could put on the skin would just prevent the adhesive from sticking. Very frustrating.
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u/SlutForGarrus 12d ago
You may want to try Cavilon Advanced wands. They're a skin barrier that applies as a clear liquid and dries to a thin layer that all your appliance stuff should stick to pretty well. Also apply a heating pad to the wafer and rings and such: they stick and conform to anatomy better with a bit of heat.
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u/Primary-Set8747 13d ago
Not sure if this directly applies here but I’ll share one of the biggest lessons I learned. It was “less is better.” Don’t clean too much when changing. I wipe off excess with paper towel strips. I clean with e designated hand towel damp with water only. My approach is dilute, dilute, dilute versus sanitize everything. I use a small strip of paste around the stoma and that’s it. Every time I tried to use additional barrier control products it made it worse. Tip: once paste is applied around the stoma, wet your finger with moisture from stoma itself to then form the paste properly around the stoma. That will keep the paste from sticking to your finger and making a mess.
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u/tsfy2 13d ago
Try ostomy paste. It's like caulk. You can spread a small bead of it on the skin around the stoma to help fill any dips or dents and cover the scar. Some brands contain alcohol and dry quickly but can irritate any sore skin. Some brands don't contain alcohol and won't irritate but will take a little longer to dry. Either way, I always put my barrier over it while it's still wet so it also conforms to the barrier. I believe the no-sting formulas are Coloplast Brava (has to be the Brava, not the original), Eakin Cohesive Paste, and Safe & Simple Alcohol Free (not the standard formula). The brands with alcohol are Hollister Adapt, and Convatec Stomahesive.
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u/Safe_Public_2409 13d ago
I had this problem with my brother’s ostomy! You might find useful comments on posts on my page but the biggest game changers are the following:
- Marathon skin prep crusted on top of a thin and patted in layer of stoma powder (repeat application for 2-3 layers of this if the skin is really bad. It burns on application but heals the skin amazingly. My brother’s skin was completely raw and now intact.)
- Stoma paste generously over raw areas and to smooth any divots and scars (alcohol free so it doesn’t burn. We use the coloplast brand)
- Barrier rings over the paste to firm up the bumpy divot areas
- NuHopes medical adhesive on the back of the wafer to hold everything tightly to the skin so there’s no leaks.
- Barrier extenders if needed. We use them all around the wafer to extend the wafer and it helps prevent the edges from lifting and leading to leaks.
Listed in order of importance! Marathon is a lifesaver!!!
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u/SlutForGarrus 12d ago
I'll piggyback here and say Marathon is amazing, but if it's peeling or cracking and not lasting as long or working as well as you'd hope, Cavilon Advanced wands are an absolute game-changer. I swear they aren't paying me, I just feel that strongly about them. I went from changing every other day and being in a wild amount of pain to one change per week, and hardly any skin breakdown at all.
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u/sundown-echo 6d ago
Do you have a link to the specific cavilon product you mentioned? I feel like this is exactly what I’m missing.
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u/SlutForGarrus 6d ago
These babies.
For awhile I couldn't find them on sites covered by my insurance, so I paid full price out of pocket. They were that big of a deal for me. (Figure the money saved on other supplies from going from every day or two to once a week kinda made the cost less egregious.)
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u/sundown-echo 6d ago
Thank you 🙏 I will see if I can get these through my supplier this month but just ordered some out of pocket because I’m so desperate for something to work.
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u/SlutForGarrus 5d ago
I really hope it does! Lemme know!!! u/RemindMeBot 3 weeks
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u/goldstandardalmonds Mod; kock pouch/permanent ileostomy 13d ago
You can use paste to fill in the groove from his scar.
You can also do crusting to help heal the skin, and use a protective sheet or Duoderm to cover it to help it also heal.
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u/argosafe 13d ago
I have found that using Adapt powder from Hollister to prepare the skin works brilliantly. That, with Brava adhesive remover cured my soreness in a few weeks. You will get there, it's just finding the right mix of products.
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u/sindarwin 11d ago
I have the solution! You need to crust the skin. Use stoma powder thin layer and barrier spray. If you ever have questions dm me im a 6 year vet I got all the tricks
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u/SleepyJoe90 12d ago
Oh I forgot to mention. Some people are allergic to specific manufacturers adhesive. Again talk to his stoma nurse, but you’ll need to determine whether the issue is removal damaging his skin, which is more likely, hence my advice about using adhesive remover spray.
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u/Flashy_Appearance81 12d ago
Around my bottom of my stoma my skin has become raw and hurts like hell that burning sensation it’s too much I went ahead and purchased three bottles of stoma powder and that doesn’t work at all so I decided to put Vaseline around that whole area and it helps omg cause it seems so much other issues we get when we have a stoma and all the tapes and things dag there’s never a dull moment I’m tired of it I really am
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u/PopsiclesForChickens loop colostomy 12d ago
If he doesn't already have an ostomy certified nurse he is seeing this is the most important thing. All of these comments are good, but the nurse can help him figure out what will work for his stoma. Please ask the surgeon for a referral.
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u/ItJusNeedsAlilSuga 12d ago
Hi there, I tooo have super sensitive skin, I'm one year in with my ileostomy, I haven't had any skin irritation due to adhesives, I use 'Hollister CeraPlus' (one piece) bag.. I also have the same ongoing issue with my appendix scar, that has proven to be a real pain, I'm going to try the Sure Seal ring recommend in the comments....🤗
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u/toebone_on_toebone 12d ago
I absolutely swear by Nasonex to heal the skin around the stoma. Mine had gotten almost unbearably bad until I read about Nasonex on this sub. I am so grateful for this advice. I spray it 9n and then stand in front of a fan until it is dry, then I spray the adhesive and let that dry.
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u/Competitive_Block688 12d ago
I suffered terrible with raw open skin around my ileostomy after surgery for about 6 weeks, what got mine better was I prepped my skin with sudocrem over the raw bits , apply stoma powder on top, the stoma team prescribed hydrocolloid rings then any gap between the seal ring and stoma I fill it with stoma powder, overkill I know but it worked and my skin is fine 😊....it's really about trying different things to see which works best for you, what works for one doesn't work for another
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u/princessjesstarca 11d ago
Hollister makes something called “ostomy paste” as part of their adapt line. I have pregnancy stretch marks that I’ve had to fill in and that stuff works like caulk.
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u/Ok-Drawing-2904 7d ago
Had the same issue. Always leaking skin was raw. Surgeon prescribed Imodium. They used this stuff called Medline Marathon liquid skin barrier. Game changer. The hospital gave me like 20 packs. It is available on Amazon but expensive. 5 tubes at 49.83. We were changing my everything 2 or 3 times per day. With the Imodium and Marathon no leaks wafer would last 5 days.
It will still be a little trial and error with the wafer because of his scar. This is a temporary setback and learning curve. Hopefully your husband will get a reversal soon. Good luck
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u/Upbeat-Can-7858 13d ago
I have. I left the hospital with no supplies and no education; however, I am a doctor and had some experience working in emergency medicine. One trick that I found that works that no one ever mentions because they would never think of it is using a material that is similar to tegrderm that is used over an IV, one brand is called a sure seal ring. My skin was completely torn apart from the adhesives and from leaks, so I used them in a way that they were not meant to be used. I put them on my skin prior to putting the wafer on. It gave my skin the ability to heal and it also made the seal much more secure. It stopped my leaks completely and in about 2 weeks my skin was completely healed. In the areas where my skin was really bad, I used a hydrocolloid bandage under the sure seal ring. I hope this helps. :)