I'm a caregiver for my wife, her ileostomy is giving us fits. The skin is enraged around the stoma, so not getting adhesion of the base, more leaks, rinse, repeat. I've tried Calamine, (it burns), zinc, (slippery), and changing from flat, circular barrier rings to convex.
I hope somebody might have something topical that would help the skin and also not perpetuate leakage. Thanks for whatever you can share!
Is the area around the stoma flat? round? creases? dips/valleys? How high is the stoma above the skin? Does she have colostomy or ileostomy?
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Change your product and try samples from other companies. It's probably the adhesive you're allergic to; also, go see your stoma nurse. Regards, IGGIE
My wife had a similar problem and it was causing constant leaks. We went to Emergency yesterday and saw the Ostomy/Wound Care nurse. She used a Cavillon Advanced Skin Protectant and instead of a stoma ring, she cut a suitable sized hole in a large wound care pad. It has been a little over 24 hours and no leaks and less pain. She also gave some extras and said to continue using this 'til the skin is healed and then return to the regular stoma rings. Fortunately we have universal health care so there was no cost other than our time and it was well worthwhile.
I have shared this before and many will pooh-pooh the idea, but it truly works for me... I put a small dab of Vicks VapoRub on the edge where regular skin meets the raw red outside edge of stoma skin (where the rubber meets the road, if you will), then make sure the pouch hole is as close to this as possible... Vicks is an old-fashioned remedy and it works for me to eliminate the irritation of the skin almost immediately, and by my next change (every other day/ileostomy), the healing is well on its way. The trick is to seal as best you can and as close as you can to the angry skin... sounds crazy, but it works for me... jb
Hi walter,
You have to figure out why she's getting leaks or you'll never get her skin to calm down. Her irritated skin won't heal, no matter what you put on it, if it continues to see output......which is highly acidic. Get her to an ostomy nurse or a wound care nurse if you can't find the former, and get the leaking under control. If her skin is currently so bad that nothing will stick to it you need to use a product that allows the skin to heal without coming into contact with output. Nu-Hope Labs makes a non-adhesive barrier that essentially uses a large soft O-ring to seal the stoma that's held on by a belt. This allows the skin to be exposed to the air and heal. But see an ostomy nurse to find out if you need to go that route or if there's a simpler solution.
;O)
Hi, have a word with a stoma nurse they usually have knowledge of this type of problem. I have used a barrier dressing called Duoderm to help with this type of issue. Regards. Elwick
I had the exact same issues. I went to a stoma clinic for 3 weeks and the nurse that helped me was AMAZING. She/they, the stoma nurses, really have seen it all and they will help. Look around for an ostomy clinic. You won't be sorry and good luck.
Hi, I respectfully disagree with saying stoma nurses have seen it all. True, they've seen it but never felt it or lived with it.
And be advised, if you get a textbook nurse versus a street-smart nurse, you lose.
Everything I learned from this forum so far to treat irritating skin, my current issue, has been contradicted by my nurse who has 30 plus years under her belt.
She discarded the idea of using Domeboro.
She didn't heat the appliance prior to installing it.
She advised using Stomahesive powder AFTER Nystatin powder fixed the redness, which might be the smartest thing she told me. And that is being contradicted by fellow ostomates here.
You have to be somewhat of a lawyer. Know the answer before you ask the question.
All this advice from me is just from last week, Friday 10-18-24.
Always double-check the information you are given, then make a rational decision.
Warrior, I agree with you. In my experience, the stoma nurses don't know jack and will leave you messed up instead of helping. Especially when the stoma nurse takes notes from the patient. Lol, I had one stoma nurse writing down notes from me. Most of our stuff becomes common sense; for example, if you have a flush stoma, you don't want to double or triple barrier rings. It creates a wall, and nothing will get into the bag but pool around your stoma and eat your skin. And no, don't make the hole bigger than the base of your stoma, or you will leak and bye-bye skin. We know more than they do; we have hands-on experience. And for any other problem, I am going to my doc, not a stoma nurse. I had a stoma nurse before I left the hospital let me leave with a dead stoma. On another surgery, I had a stoma nurse wrap a barrier ring too tight and was cutting off blood circulation; one slathered my skin with cream (which we know the barrier won't stick to) and tried to stick the barrier over that 🤣, and she had 25 years of experience. Lol, since I've had to have my stoma relocated and revised six times, you know the stoma nurse comes into the hospital. I would send them out, but you know they try and stick around and stand there.
Righto.
I believe we have nurses as members with stomas here.
A few peeps with Ph.D.'s too.
Only you know your family.
It's here. It's the experience going through this shit that makes them know their shit. No textbooks... life street smarts.
I think she should have way more stoma nurses that actually have a stoma. It is a must to have one to know the scenario.
Yes! Change your appliance more frequently to avoid this, but cure it this way: Fast until you're empty. You basically have diaper rash. Clean and thoroughly dry the affected area and apply Nistatin powder. Let the affected area have air and light for a few hours. Apply a thin coat of Nistatin powder with your regular prep pad, dry, and apply new appliance. Change and repeat in 2 days, being careful to pull the appliance off in the shower gently and slowly as to not damage the area. Do it once more, and it should be pretty good.
I learned a trick from other ostomates on another site, Head & Shoulders shampoo! Wash the area around the stoma with H&S and let it sit for a minute then wash it off. Make sure it's the original Classic Clean formula. I always keep a travel size bottle in the shower.
First, thanks for replying! It's an ileostomy, it has receded to below the height of her surrounding belly, if that makes sense. I need a convex barrier to even have a prayer of preventing leaks. We went to the hospital yesterday and got a treatment with a purple liquid that is supposed to harden to a shell. It lasted about four hours, came off with the next leak. Trying a couple of hydrocolloidal patches now, might not be using them exactly right yet. Thanks again
I think you might be right about allergy to the adhesive. Using Hollister now, got Coloplast samples on the way, thanks for the advice!
Have you tried 3m advanced skin protectant? It is the same concept as the marathon you used but it works way better
It definitely sounds like allergic reaction to the adhesive. Glad you're getting samples. Keep us posted!
Ileostomy, stoma recessed below surrounding area, 22mm but oblong, not round, we can't get a seal close enough to the stoma due to inflammation, have tried barrier rings, paste, crusting, convex bases, flat bases, Hollister, Coloplast. Thanks for replying, any ideas gratefully accepted.
Could you elaborate on what exactly the wound care pad was/is? Thanks
I had an ileostomy in June 2024, due to bowel cancer. It was very aggressive; that's why they took the large bowel out. So, stoma bag - I hate it. It's degrading, disgusting, and I will never accept it. I was told I could lead a normal life. WTF, those people are idiots! Is it normal to have your innards outside your body, to have to empty the bag early hours in the morning, maybe several times? I am now waiting for the results of an MRI scan, taken on the 19th of December, regarding my liver and spleen... it's now the 2nd of January, 2025!
If I need surgery for the liver, I will refuse to have it, as I can't go through another major operation again. Also, I don't want chemo either, as the idea of losing my hair, eyebrows, eyelashes, and vomiting, etc. - no way.
First you need a treatment for the inflamed skin that would allow you to apply your barrier/flange/wafer.
For example, a very effective but more expensive solution, for me, is to use a beclometasone dry powder aerosol inhaler. Aerosol steroids are a quick, easy-to-apply method that reduces both the systemic side effects of oral steroids and the problems of stoma bag leakage seen with oil-based preparations. The aerosol steroid works well with broken peristomal skin — a steroid inhaler is used to decrease the peristomal inflammation without affecting the adhesion of the stoma appliance which could be caused by creams.
The dosage of beclometasone dipropionate aerosol inhaler for peristomal skin differs from its use for asthma or COPD. For peristomal inflammation, the typical application is to use two puffs directly to the affected area at each stoma appliance change. This is different from its use for respiratory conditions, where it is usually administered as 1 or 2 puffs twice a day.
The recommended steps for using a beclometasone dipropionate aerosol inhaler on peristomal skin are as follows:
• Clean and Dry the Area: Ensure the peristomal skin is clean and dry before application to maximize effectiveness and adherence.
• Application: Spray two puffs directly onto the inflamed peristomal area during each stoma appliance change. This method reduces inflammation without affecting stoma appliance adhesion, unlike creams.
• Duration: Treatment typically leads to improvement within a week, with complete healing observed in about four weeks.
IMPORTANT: Once the skin has improved, gradually reduce applying the treatment, rather than stopping completely — apply on alternate changes for a couple of weeks, then stop the treatment. This may prevent recurrence of the inflammation. Generally, it is preferable not to use topical steroid treatment for a prolonged amount of time, though sometimes this can be necessary.
Brands like Clenil Modulite and Becloforte are commonly used for this purpose. Becloforte may be preferred for its higher potency, requiring lower doses to achieve similar effects compared to Clenil Modulite. Clenil Modulite and Becloforte are primarily available in the UK. They are not commonly found in the United States, Canada, or India under these brand names. In India, similar formulations such as Beclate are available. Since I am in the U.S., I order the Beclate 200 Inhaler from AK PHARMA International in India.
Next you will need to use a convex barrier/flange/wafer since your stoma is recessed. I have had good success with Coloplast's "SenSura Mio Convex Flip" — it does not have a tape boundary and that works best for me. Hopefully this provides enough convexity for your stoma to protrude up through the hole on the barrier. If it does, you can apply a barrier ring over the stoma on top of the barrier/flange/wafer. The best barrier ring that I have found to work with this setup is Marlen's "Ultraseal Barrier Rings" (Marlen Item# 09500).
Mindy, after experiencing 2 major surgeries and 1 minor surgery in a three month period, I can understand your feelings about not wanting to have another one. If it was not for my wife and two daughters, I would never have had the surgeries — I could not be so selfish as to abandon them. I have never undergone chemo but I have heard of the toll it takes on a person's body, both physically and mentally.
Adjusting to life with a stoma is life altering. When faced with physical challenges we tend to glorify our existence prior to the challenge, bemoan our current existence with the challenge, and undervalue our ability to overcome the challenge in the future.
Is it normal to have your innards outside your body? Is it normal to be blind? Is it normal to be deaf? paralyzed? speechless? incontinent? etc?
Yet all the above have been encountered, embraced, and overcome. In addition to my ostomy surgeries, I have had two major neck surgeries and have very limited use of my hands — as a software developer/manager I needed my hands. I had to retire from a profession I enjoyed. I learned to embrace life after retirement, next I had to welcome an ostomy into my life. But for me Gloria Gaynor said it best, "Did you think I'd crumble? Did you think I'd lay down and die? Oh no, not I, I will survive."
Instead of lamenting, Embrace the challenge. Not only must you adapt to managing your ostomy, you must better understand your digestive system. Keep a diary of the foods you eat to learn their effects on your digestive system — for example, bananas can firm up your output, Metamucil can firm up your output, chocolate has a laxative effect and causes your bowel to move, when you eat, especially fats it causes your bowel to move, etc. Learn how fast certain foods move through your system.
If you are concerned about the frequency of bowel movements you can take loperamide (immodium) to slow down the frequency of your bowel movements.
I have a normal life. It is a new normal from my life prior to having an ostomy, even better in some ways. Every Mindy, I have known has been cheerful not grumpy. Mindy smile and learn how to manage your ostomy to obtain your new normal. If I can manage a stoma with the condition of my hands and poor eyesight then most people can. 😊
First, thank you for taking the time to post so thoroughly here! Very much appreciated! Did you need a prescription for the inhaler? I'm just beginning to look, not getting the right result so far. My wife's stoma is like looking down on a volcano, nothing protrudes at all in there. Did you have to push really hard to get it (the stoma) above the surrounding area inside the crater? And to make sure I'm clear, you put the Coloplast convex flip on the area, then put the Marlen ring on top of that inside the flip? I have only seen those barriers put down first, then the base or flange on top of them.
Thank you again, super helpful!
I ordered from India and did not need a prescription — I wasn't able to purchase here in the USA because the price is prohibitive.
You can also try Fluticasone propionate (Flonase) spray/inhaler. It is easier to find, the spray is cheaper but I prefer the inhaler.
Apply, each appliance change, no more than once daily, onto the affected area only and sparingly. If using inhaler, direct the “puff” at the affected area. If using the nasal spray, pump the solution onto your finger tip to apply.
If the stoma is deeply retracted, you may need a barrier with deep complexity, such as "SenSura Mio Convex Deep click barrier"
If you need more convexity, you will need to add an additional convex barrier ring to the bottom of the barrier, such as "Brava Protective Seal Convex" barrier ring
https://products.coloplast.us/coloplast/ostomy-care/brava/brava-ring/brava-protective-seal-convex/
Depending on how deep the retraction is you may have to try different set-up to see what works best:
You can get free samples of these products from Coloplast to determine which works best. Convatec and Hollister provide similar products. that you can try also.
Only after you have the right convexity and the stoma is protruding through the hole in the barrier should you attempt placing the Marlen ring over your stoma on top of the barrier — yes you interpreted correctly, the Marlen ring should go on top of the barrier around the stoma. You can also get free samples from Marlen — you may have success w/o using the Marlen ring.
Don't be afraid to experiment, you can make this work 😉
