Struggling with Ostomy Bag Leaks Despite Various Solutions

I was doing so well for a while, making it two days between bag changes. No skin problems. Good, right?

Wrong!

The last three bag changes have leaked just enough to hurt me. I have now tried everything: paste, Tegaderm, protective sheets, calamine, Head and Shoulders, silver colloid spray. I tried all different rings and wafers. I started a spreadsheet of my days with pics of leaks attached for insurance fights over products.

I started cutting my ring and fixing it around my stoma because it's a big duck beak-looking thing and the base is smaller than the top. I also place a ring on my wafer before placing it on, at the suggestion of an ostomy specialist. Even that is letting output in.

So tonight, I put some paste in a children's medicine syringe and placed some in the deep cracks along the edge of my wafer/stoma and let it air dry a bit to stiffen up to a solid.

I feel desperate. I am on colestipol for bile malabsorption and also have diversion colitis now. How do I flush the mucus out if my colon doesn't work? I could push for days and nothing happens. But I'm in pain and I'm freakin' tired.

That's it for now, I guess.

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What exactly is insurance supposed to do about your leaks? 

I’m sorry you’re having such a rough time. You’re right, your skin is looking angry in places. Have you ever tried a domeboro soak to help with the irritation?

What about hollihesive to cut and fill in the cracks with? My woc nurses taught me to cut it into whatever shape I needed it to be, in the beginning I was layering with paste. 

Remind me, are you planning on an end ileostomy at some point?

https://www.hollister.com/en/products/ostomy-care-products/ostomy-accessories/skin-barrier-sheets/hollihesive-skin-barrier

https://a.co/d/bRm4xZQ

Hey, so what sucks is even though you are leaking and going through product faster, the insurance company won't do anything about it. Your loophole is to talk to your doctor about putting in a request to your insurance company for 30 bags instead of 20. That's the only loophole for insurance to cover more. Other than that, you have to pay out of pocket. The best advice is to shop around to find the best price on the bags you use. I have been in the same spot; I went through a time where I had to change my bag more than once a day because the leaking was so bad. Question: Are you cutting to the size and shape of your stoma? That's a key important part. Also, try an advanced skin protectant; that is going to be your best bet to protect the skin. There's 3M Advanced Skin Protectant and Marathon Skin Protectant. Are you allergic to your wafer? Or is the output getting on the surrounding skin?

G-Day Smnard,

Are you using a seal before your wafer? Also, that hole below your stoma, you can fill that in with Stoma Paste.

Your stoma is a little oval, not round. You have to make the seal fit that shape and ensure a snug fit, but cut the wafer hole a fraction bigger, no more than 1mm though.

Keep us up to date. IGGIE

How to Get Back to Fitness After Ostomy Surgery with Ryan | Hollister

How do you use the Domeboro soak? Are you dissolving it in water and washing the skin, or are you crusting it?

If you need more products before you're "due" then the documentation of leaks helps the doctor get the orders approved. The insurance can't do anything about my leaks. I think maybe you read my statements wrong. 

I have that stuff! I'll try doing the soak tonight. Thank you!

I'll check out the Hollister sheets. I do not like the Coloplast sheets. I bought generic hydrocolloid sheets off Amazon.

 

Definitely will have an end ileostomy. If the mucus does not exit and causes much more pain, I'll request we do the procedure sooner.

Hi! I definitely use a barrier ring. Lately, I've been using 2 rings and snip one end to make it easier to fit to my stoma. I'm starting to think I may need to use more paste. Someone on another page was saying how they used the med syringe to pipe the paste, and honestly, it works so well.

I have only used this as a soak. I put it in really warm water, soaked a washcloth and then wrapped it around my stoma. 

I have cut my Cera adapt ring and molded it around my stoma a few times... it's almost a custom fit. And even cutting it and squeezing the ends together can bring it back into a round ring that honestly does work. I often think about adding a second ring around the first one too. Have you considered doing this? The cutting... the second ring around the perimeter?

Gee, I thought you had this shit licked for a while, not hearing from you. Keep at it. Experiment. If you have enough supplies, of course, do what you can.

I'm also surprised your doc needs a ledger or proof from you to document how fast you're changing the appliance.

That's ridiculous. Never heard of that. Your doc sounds textbook educated, not street smart.

Sending good vibes, kiddo.

Never give up.

That damn Alien alien spud!! 🤭

 

If it burns, dilute the solution. I had that. Ouch🔥. Place a soak around the skin for 15 minutes, said the instruction.

My nurse said not to use that stuff 🤦‍♂️, but we know it's proven to work. Good luck.

Hello, I am new to this group and have had my iliostomy for 8 weeks. I have been struggling with recent bag failures and leaks and it is so disheartening.

I too had a few weeks with having bags successfully placed and going 2 to 3 days without a problem and I thought I had mastered one aspect of this journey.

 

I too had a few weeks with having bags successfully placed and going 2 to 3 days without a problem and I thought I had mastered one aspect of this journey.

 

But in the last four days, I've had to change the bags so many times and have had leaks in various different ways. Just as I was starting to really get overwhelmed and disgusted, I ran across this string, and it has given me so much hope and allows me to know that I am not alone.

 

Overwhelmed and disgusted, I ran across this string and it has given me so much hope and allows me to know that I am not alone.

I just joined this blog three days ago so already it has been so helpful. Thank you! Thank you for all of the responses too.

 

One thing about paste is it can be difficult to clean up. Are you thoroughly cleaning up all the paste before you apply your next appliance? One nice feature about barrier rings is they are very flexible. Take a barrier ring and cut it in half, then take one half and straighten it out so it is no longer curved, then begin twisting it into a cylindrical shape; that is, like a pencil. You can now lay that cylinder into the hole below your stoma. You are trying to create a flat surface for your appliance to adhere to. You mention that your stoma is smaller at the base — by applying a ring around the hole on your wafer before applying it to your skin, you are not creating a tight seal around your stoma since it is smaller than the hole opening. Instead try applying the ring directly onto your stoma, ensuring a snug fit before applying the wafer on top. I could not tell how far your stoma protruded above the skin. If less than a half inch or so, you may need an appliance or ring with light convexity. If your stomach is more round around your stoma, you may need to try Coloplast's sensura mio convex flip. Order free samples for things you are trying. Be optimistic and shoot for 3 - 4 days between appliance changes, I think it is doable.

Yup.  Definitely try a convex wafer.  That did the trick for me, plus a ring of some sort.

Welcome to the group. 

There are some older threads talking about leaks that may be helpful or start your own thread if you want specific advice. Tell us what you've tried and how it's failing. 

I went through a period when I first started where I was changing my appliance 2x per day because of leaks. You are definitely not alone. 

Each of us is different in what works for us so there's no one size fits all solution but the experienced people here can help you find a solution.  

I use a product called 3M no sting spray/ Cavilon spray to help heal wounds. I spray affected areas let it dry a few seconds put my Eakin seal ( to fill gaps ) then bag up, add a belt ( I wear a belt of some sort 24 / 7 see links below ) and good to go for 8 to  14 days my medical supply company doesn’t carry 3M spray  so I get it through Amazon

https://a.co/d/avsRmti

https://a.co/d/gtOg1kD

https://a.co/d/jlwQNxj

https://a.co/d/6TzTmUt

 

 

Correct. The insurance won't do anything without doctor script approval. With what I have written and in pictures, my doctor can't argue it. This was suggested by someone that was asked to do it by their doctors office so approvals would be easier. I know the insurance company has zero say. That's not what I meant when I wrote that. 

I use skin tac barrier wipes because they are like glue. Best I've found yet! I had one vial of Marathon and it was amazing but I am out and need something now. 

I always cut my wafer just big enough to fit over my stoma. I keep the back to the wafer as a stencil for the next one. I'm allergic to cohesive rings and eaken just doesn't stick for me. The sore skin in this picture is from output sneaking under the ring. 

It's incredibly frustrating that I found a good routine with products then all the sudden it starts leaking again. My routine isn't a lot either. Just washing it with head and shoulders, I dry it real good, skin tac, use a hair dryer on my wafer and ring then apply. Done! 

I will keep using the tegaderm until this soreness eases up. 

Warrior, I was taught by woc nurses at a well known research hospital to use domeboro, sounds like they need to talk to your nurse 😃

Susan, yes you dissolve the powder in warm water. My loop ileostomy was a diva so I ripped pieces of paper towel into smaller strips and let those soak in the mix then use 2-3 pieces all around whatever is irritated. If spew happened (always did) I removed those towels and put a couple new ones on til the 15 minutes that it should stay on the skin is reached. 

If you read some of my story a while back, I didn't think my nurse was very street smart.

I had seen her in November last year for irritated skin and was not impressed by her. I mentioned it now about the soak because we are led to believe these nurses know their stuff. Rather, know our stuff.

And we do hear conflicting recommendations, so I wanted to post this one...as one.

Now, if a doctor disagreed with the soak, would you feel any better? Different?

Fact vs. fiction.

Street smarts vs. textbook smarts.

Warrior, hmmmm good question. 
How do we know when to trust the Dr?
You might have just opened up a big can of worms 😳😁

I have found Doctors/Surgeons/Gastroenterologists are not very knowledgeable about the day-to-day maintenance of a stoma — this gap is normally filled by WOC Nurses. I have been fortunate to have an excellent WOC Nurse. My surgeons relied on the WOC Nurse's guidance on stoma placement and follow on maintenance.

Have you tried other barrier rings? Also, do you use a barrier spray? IGGIE

I opened a Pandora's box. You can trust your doctor to a certain degree. What Atraveler just posted is true.

My stoma nurse? She is a wound care nurse. Didn't know anything about diet. She advised against using stoma powder as nystatin worked better. I didn't know, nor did she tell me it's for fungal use. Duh. It did help.

When we replaced my appliance, we didn't warm it up—you know? Cold attachment.

It didn't last 12 hours!!!!

Now I use stoma powder. I am getting 7 days out of my appliance. For an ileo, that is incredible.

Take whatever advice you get from them, you take with a

grain of salt.

Nothing beats advice from the horse's mouth. (that's us)..and...the advice or suggestions given here may work for one or several; that's up to you to do something with it or not. Just don't wallow. Damn good advice given here. Use it or lose it.

It also comes down to everyone is different. If your nurse had a patient have a problem with the soak then she just started advising all patients not to use it. The problem may have been specific to that patient.

If what you are doing is working for you, no reason to try it. However if you have a problem, it's worth a try. 

I seem to have my appliance problems under control... knock on wood. But I still have this stupid drain that is totally not behaving and much less controllable than a stoma. Little so and so is actively bleeding and leaking ileostomy-like flud onto my skin nonstop. My home health nurse had it under control with a barrier ring and whatever else she was dressing ot with. But she had emergency gall bladder surgery and I'm stuck with these other nurses who are lost about dressing this wound. I've requested a sample of the barrier film and will ask them to try it next. I don't think they will wait around 15 min to use the soak. 

This post turned into a novel. Sorry! My point was that as ostomates dealing with this stuff 25/7 we have more knowledge than any nurse. And that knowledge can be translated to other applications.  

We should teach a class for nurses. 

Hollister has a barrier ring too, Adapt 7805.

I clear the irritated skin around my stoma with the following: Head & Shoulders shampoo Classic Clean, add Butt Paste diaper cream, remove excess after applying, then apply Hollister 7905 Karaya 5 powder. Then you bag and/or barrier ring. Barrier rings are my lifesaver against leaks! Try to find one you are not allergic to.

Hollister Karaya Powder creates a sticky gel around irritated skin with all-natural Karaya hydrocolloid. It absorbs moisture from broken skin around the stoma, which allows the barrier to adhere to the skin better so the skin can heal. The powder should only be used when skin is moist or irritated.

Hi, I used to have the same situation; my skin would crack and hurt really badly. I'm using Eakin sealer and stoma powder; it helps me. Two-piece pouch with filter. Hope this helps you.

I need to second the recommendation for the Domeboro rash relief - I have a retracted stoma, so my skin is taking a beating, and this stuff is wonderful and soothing!

I need to second the recommendation for the Domeboro rash relief - I have a retracted stoma, so my skin is taking a beating, and this stuff is wonderful and soothing! I am dissolving it in water, soaking a cloth or pads in it, then holding it on the irritated skin.