Skin Breakdown and Leaks with New Ileostomy - Seeking Advice

I have a new end ileostomy, about 3 months (Crohn's). I've never had intact skin because no one taught me anything in the hospital, and my home nurse only took care of my PICC for parenteral nutrition. I've been able to talk with WOC for the past 6 weeks or so, and it's helped, but I feel like they are limited in their tricks (they don't seem to know of any patients with a stealth belt).

So now my skin is angrier than a talk radio host, and I'm developing leaks because nothing sticks to my not-skin.

I use a flip convex wafer (1pc Coloplast) because I have a little convex hill since surgery, and a barrier ring, which basically gets eaten through in 48 hours (I cannot go 49 hours without changing, no way no how). I end up crusting with stoma powder and no sting spray film, which increases my time bomb from 2 hours to like 20. Which still means leaving the house is taking my dignity in my hands.

This week has been a kind of pain that one cannot describe adequately to anyone who hasn't already died from pain. I've heard a nice range of shocked oaths from doctors who've seen what I've been through. Getting hit by a hot cast iron pan covered in salt and lemon juice would be a 6 on my pain scale where this is a 10.

Any thoughts on calming this hellfire enough that I can get back to 2 days between changes? Because I'm just tearing away more of my body with every appliance change, and quite frankly will run out of pouches soon because the medical system in this backwoods of a country is privatized and the insurance company rations the things like chocolate in East Berlin.

Hi there,

First, I am so sorry. I know firsthand how bad the skin gets when leaking and how it's a pain trying to get it to stick. In my opinion, WOC nurses aren't much help at all; I believe they only make things worse. I have a couple of questions for you: How are you cutting your wafer? Is your stoma above skin level, level, or below? And when you clean around your stoma, what are you using?

Is your skin irritated just where the leak is happening or anywhere the adhesive part of the wafer touches the skin?

Many manufacturers have advice nurses, so contacting yours would be a good start...

Speaking for myself, I use a lot of "skin prep" before application and I do several layers with drying in between. There is a method called "crusting" that helps with healing when layering. I learned from the University of YouTube...

For me!

Prevention is best, so on change-out days I go commando as long as I can with the Lord's good air on exposed skin and stoma. I pick the longest inactive period.

First, after removal, I clean with Hollister or Medline wound cleanser using tissue. I prefer the Medline, but Hollister is good and a bit cheaper.

A person on here suggested "The Red Solo Cup" handy, which I found better than having a paper towel very handy. The cup is quicker!

Stoma cleaned and cup in hand, I clean up the skin area around the stoma of any residues from the barrier with makeup removal pads (cheap at Dollar Store) and 91% Isopropyl Alcohol.

LOL... I collect the little sticky pellets in my belly button, then stand over the trash can to dispose of them by picking out those sticky little buggers.

-------This is now when I take my shower. Wash everything really good with warm/hot water and soap. Everything. -------

Veg time watching TV or bang on the computer with a solo cup very handy, using a pad and alcohol several times throughout the "commando" period. When stuff happens in the solo cup, I clean up the stoma with the wound cleaner.

I get 3-5 hours of "down time" before stink-eye becomes active, so I plan time to build skin barrier prep layers, dabbing around the stoma for a thicker layer—dry—then wipe the total appliance area to cover evenly. Repeat a few times for a good layer.

This layering with stoma powder is the "crusting" method.

I am warming up the Barrier Sticky Ring in a hot pad at this time too. The warm-up helps with adhesion.

With sore skin and rash wounds, I would "commando" and change the appliance every day to air out until healed up, no more than every other day.

It is my belief that clean, bacteria-free skin in fresh air is the healing secret.

When all healed up, I change the appliance no more than every 4 days using the described method. Works for me!

Good luck

 

 

Wow, man, I know your pain (I think). The best thing I have found for bad skin is an inhaler! Dry cortisone. I got a prescription from the stoma nurse, but your doctor may be able to give you one. Question, has your skin ever been clear? Perhaps you are not using the right type of flange/wafer. I know when I tried new products, I broke out horribly. Is an end ostomy the same as an ileostomy? What finally worked for me was Hollister Cera Plus with Convatec stoma paste all around the hole in the wafer. No skin prep, no powder. The paste fills the little spaces. Have you visited a WOC nurse? Maybe it will take a few times before you find the right one who can really help. I hope things change for you. Sandra

How to Manage Emotions with LeeAnne Hayden | Hollister

I eat some marshmallows (hinders output for a while for me), take a nice shower, rinse the stoma, pat dry, and let it air. I do this in the evening a couple of days a week with no obligations at the time except that. The less product rubbing, etc., for me, the better. Jeesh, I'm sorry 😔, I'm sure you've already explored options, that's just what I do.

If your skin has always been irritated, I'd look more at what you're using. You might be having a reaction to your products more than the output being the cause of the irritation.

You need to be seen by a WOC nurse and not just talk. He/she needs to see your technique and anatomy. I can tell you what I do, but you need to be seen by a professional. Remember, surgeons may know how to make stomas but usually do not know how to care for them. It sounds like you have had barrier problems from the beginning.

What I do for my ileostomy, but may not apply to you: Use a well-fitting barrier that is convex + thin ring. Clean skin only with water. If skin is broken down, use Adapt powder and remove excess. Apply Cavilon skin prep. Let it dry. The thin ring is cut and placed beside the stoma. The barrier is placed over the thin ring. I change my barrier most commonly every 5 days and sometimes 7 days in cooler weather. When you have skin problems, you should not go as long as I do. Barriers need to be changed sooner when you have skin problems to assess the skin for leakage and healing. I also wear a belt which adds a little push to my barrier and may help prevent a hernia. If you were malnourished, you are more susceptible to yeast infections too.

One more comment: I use Hollister. Coloplast - I like the design of Coloplast bags. However, I tried Coloplast twice between usage of Hollister. Repeatedly, my skin would itch and be red and irritated. I started getting folliculitis too. I talked with Tom Printon of Coloplast about my problems, and he hung up on me and did not call back. That is my experience.

I feel your pain. Good luck. Everyone on this website needs to hear how you solve your problems.