Persistent Very Sore Rash Around Stoma - Seeking Advice

Hi, I'm posting this on behalf of my son who's 12. He has a stoma and recently we've been struggling because he has a red, raw, very sore rash that covers the entire area of his stoma bag, to the point where some of the rash is weeping. Apart from the obvious discomfort and pain, it's really starting to affect his ability to go to school or socialize in any way.

Is there anyone out there that has been through this or knows anything that might help? We feel so desperate at the moment and he feels so sad :(

Hey, there are some experts here on stoma care, so hopefully, you'll be getting lots of ideas soon. Do you have access to an ostomy/wound care nurse (consultant) or dermatologist? Are you still under the time frame where he is under the care of the surgeon? How long has your son had his stoma? Is his a colostomy or ileostomy? Did anything change in what supplies he uses? Is anything leaking onto his skin? I have kids around the same age, so I'm guessing this is putting him in a funk. It's hard watching your kid go through stuff and wanting so badly to help make it better for them.

Thanks so much for replying so soon and making me feel we're not alone.

He has access to a stoma nurse who we are seeing soon. He hasn't seen a dermatologist, which might be the next step.

As many of you might know, it's possible to get in a cycle of skin getting sore, bags not sticking or leaking, skin gets more sore, etc.

There's nothing obvious that has changed as far as we know, but on the face of it, the rash is being caused by his output leaking onto the skin. But that's just me guessing. It definitely won't help matters.

I have an IRA connection right now, but I spend a lot of time at WOC (wound/ostomy/continence) nurse visits because my skin is really sensitive and allergic to most of the adhesives/dyes used in wafers/flanges. I don't know about in the UK, but here the manufacturers aren't required to provide an ingredient list. One out of eight ostomy systems worked for me. With an ileostomy, there tends to be more leakage… I ask a lot of questions initially because the more info, the more people can usually help. Y'all are definitely not alone. ☺️

I don't know what products your son uses, but Salts makes pouches and rings infused with aloe, and they work wonders on skin irritation. I had persistent rashes and raw areas and started using their rings with aloe, and it cleared everything up. I know they also have flange extenders with aloe, so he could be using something with aloe that covers the whole problem area. Good luck!

Terry

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

It's awful watching our kids suffer. The rash is the whole length of the bag or wherever it touches your son's skin? It sounds like he's allergic to the bag or adhesive. Have you tried other products? Each ostomy supply company has people who can help with questions like yours. Maybe they can help your son.

Hi Spammer,

We need to be very clear here. Under his entire bag would imply the rash is under his barrier and underneath the part of the bag that hangs below the barrier. Is that what you mean, or is his skin under his barrier just fine? Never heard of anyone having a reaction to the bag itself, as it's polymer and pretty inert when it comes to causing a rash. But if his skin is wet and weepy, there's a decent chance it's a Staph infection and won't go away on its own.

I'm not aware of any OTC meds that will completely kill Staph, but Domeboro (also known as Burow's Solution) claims to have antibacterial effects on Staph. If it is Staph, you'll need your doc to prescribe an oral antibiotic. Normally, the longer you wait, the worse Staph gets, but we're not sure that's what your son has at this point. Either your doc or your dermatologist can take a swab of the weepy liquid and have it analyzed, which is the best way to figure out what's going on. But for now, I'd apply the Domeboro soak on the irritated skin for up to 30 minutes if possible, as often as you can. That should help ease the situation. Let us know how you make out.

;O)

Bob

Thanks so much for everyone's warm welcome and useful responses. Let me get together all the information, what products we use and pictures perhaps, and it'll be easier for people to help. This seems a really worthwhile community and it's appreciated.

It is a worthwhile community-

Full of worth- priceless in fact.

And...

At times...

It can be pretty wild too 😳

I am allergic to the adhesive, so when I change my bag, I clean my stoma with antibacterial soap, remove any adhesive, then use non-sting skin prep, some powder (a thin coating), lock it in by dabbing the skin prep. I use a moldable ring, placing it around my stoma, put my bag on, and use 4x4 adhesive to tape my bag to me and secure the bag to my body. Because of the moldable ring, bowel doesn't escape onto my skin. I use Coloplast products. My bag lasts 4 to 7 days. I empty my bag every time I use the bathroom, and I rinse my bag with water.

There are creams your doctor can prescribe for itch and rash, or even in pill form.

Hope this helps you, maybe, well, your son. Be blessed.

Thanks again all. My son has an ileostomy, and has had so since shortly after he was born. We've managed on the whole pretty well, yes he's had sore skin in the past but not to this degree. It's consistent, persistent. Another day of school missed, we're all really struggling. We're due to meet with his stoma nurse in a few days' time.

I've ordered some Domeboro soak that was suggested in a reply, we're willing to try anything. I suppose finding out what's causing it in the first place is equally important.

Bags:

Oakmed Drainable Midi Hydrocolloid

LPSC47-4315KVL

OW PROFILE Soft Convex

Bag removal spray:

Dansac EasiSpray adhesive remover

Skin barrier:

Sometimes we use Medline Derma-S Total Barrier Film Applicator Non-Sting but more recently Trio Elisse Sting Free Skin Barrier Spray
🔒 Login to see image

Ostomy seal:

Dansac TRR Seal Off Centered Hole

Stoma output sachets:

Trio Pearls Gelling & Odour Control Sachets

Flanges:

We use a combination of Trio Genii Flange Extenders and Salts Flange Extender with Aloe

The photo is from this morning and recently is pretty typical of how his skin is looking. This is the worst period we've had and it's becoming unmanageable with lack of sleep, no school, pain, and discomfort. Thanks so much for any help or suggestions and of course message me if you need more information.

My stoma nurse used to tell me to do the skin prep and powder, lock it in with the skin prep, and by the next time I would change my bag, the redness would be gone.

Thank you. What powder do you use? In the past, powder has made us think this will affect how well the bag sticks to the skin. Have you not found this to be the case?

Also, what seals do you use around your stoma, please?

Hi Bob, do you think the pic I uploaded looks like a possible allergy or is it hard to tell?

Chris

Thank you. Would you be able to tell anything from the pic I uploaded in a later post?

Chris

Re: the photo. It helps.

I can't get around how the bag hangs from this shot. Looking at the incision from left to right is very strange to me.

The little stoma looks like it's in the mouth of something.

Why does the incision run that way? The bag hangs south-down or to the right? The photo was taken while your son was standing straight up, correct?

I get the redness sometimes.

It does look like a reaction. Dermatology might help you there, but a stoma nurse definitely should advise. Might need to replace the appliance with a different manufacturer.

I really feel for your son. It's just a glitch. We will find the answer... just be patient.

...a few ideas moments later... the seal isn't sticking to the skin, allowing poop to irritate the skin like that.

It's a very small stoma.

Allergic reaction possible to sprays or wafer adhesion.

These are just my ideas at first glance.

Redness is common with leaky seals. Mine had blistered. You don't want that!

That does look like an adhesive allergy or an allergy to something being used. Sometimes even the barrier sprays or wipes, adhesive removers, etc. can cause allergic reactions. His stoma sits a bit far in too. The stoma nurse is the best to evaluate and get him back on the right track. The Domboro should help a bit, but I hope you can get him in real soon. That looks painful.

Sorry, I wasn't seeing replies to posts for a while. How's your son?

Hi there, an antifungal/steroid cream, an oral anti-itch tablet from your doctor is a starting point. Get a swab as well. Poor child.

Thanks all for your help and suggestions, hugely grateful. We've seen the stoma nurse and had swabs taken, which we're awaiting the results for. I think a huge problem is the scar lines and natural tummy folds. We're seeing some success from using putty and strips to fill those areas before putting the bags on so we have a more even surface.

We've also switched the bag to pointing down, which seems more typical for bag wearers, so gravity may help because the bags typically leak on the left or right along the lines of weakness.

Thanks again, everyone.