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Posted 1/17/2013 10:24 PM (GMT 0)
The opening to my loop stoma is attached to my skin. Getting wafers too close to that opening makes the output go straight under my wafer. Therefore about an 1/8 of an inch to 1/4 an inch is currently BADLY burned.

One bag I used last week lasted 3-4 days before burning started. Welll...it was sample and I had one more. I used it yesterday. Less than 12 hours later, the output went under the wafer so bad it was ripping away from the other adhesive part.

I have tried two different convex wafers with unsatisfactory results. (a hollister and convatec).
I've tried a light layer butt burn cream with stoma paste over it so the wafer would still stick. (gave some relief for a few days at a time but now after last night's blow out, the burn is so bad I can't take the pain real easy just sitting here.. much less trying to put stoma paste on it!)
I've used Eakin Seals with two different bags. The one I used last night with the replacement bag has already basically dessolved (or something??) with the output.

Any other suggestions??? My nurses are scratching their heads!!!

Jen sad
Posted 1/17/2013 10:56 PM (GMT 0)
BTW--TakeDown is 2-19 and I had the barium enema test thing yesterday and my JPouch appears to be ready and the radiologist couldn't find any leaks... I just need to get to 2-19 but I'm doubting I'll get there based on the last 24 hours. I'm having a bad day and trying not to cry half the time from this dang thing. (It was created on Nov 12th)
Posted 1/18/2013 12:06 AM (GMT 0)
Good luck. I have had 3 failed permanent end stoma revisions in the past 9 months and now have a permanent drain tube in my stenosed stoma. I have huge skin burn as all I can pass is liquids and even then had an ileus/partial small bowel obstruction Dec. 28th. Having to try and exist on liquids. May get TPN. Part of my stoma recessed and I have these burns along with the drain tube. Did you try stomahesive powder and cavillon no sting barrier wipes? You put a bit of powder then cavillon then more powder and more cavillon, and make a paste. let that dry then put on a very flattened eakin seal. You are lucky this is temporary. good luck with the jpouch. good luck with the burn. wish me luck i am terrified. Rosemary
Posted 1/18/2013 12:18 AM (GMT 0)
Good luck Rosemary.

I did do the powder/skin barrier layers then eakin seal. That's what is gone now.. :(
Posted 1/18/2013 4:58 AM (GMT 0)
Was it actual Eakin (ConvaTec) brand? I know the different brands of seals react differently. Some brands hold up better and do not dissolve as easily under the influence of the high acidity of an ileo, and others stick to the skin better... I can't remember which is which, but you might want to try experimenting with different brands. (Call the different companies and ask them to send you some samples - for some reason they love giving away free product!)

I had a very finicky stoma, and the eakin seals were the only thing that worked pretty well for me to prevent output from seeping under my wafers... as long as I was careful about placement and made sure to get a tight seal (no moisture) and not leave any exposed skin. Even then I couldn't go too long between changes, but it was the only way I could get the ulcerations to go away. I would have experimented more with different products, but only had my ileo for ten weeks, so by the time I found something that kind of worked, it was time for my reversal.
Posted 1/18/2013 8:14 AM (GMT 0)
I had the same thing where my loop ileo stoma hole was right at skin level and pointed to my skin not out and away. I had pretty bad alteration until i started changing appliance every single day. It stopped my leaks and skin healed. If i was lazy or forgot, leakage! Change everyday. It will help. I stopped using any kind of ring, paste or wipes and skin cleared up fast and no leaks.
Posted 1/18/2013 5:06 PM (GMT 0)
couple things.
how are you putting the eakin seals on. Are you smashing them to the back of the wafer and then applying on of that to your body.
then heating up everything with a hairdryer

also are you crusting up a any irritated area with powder and a barrier wipe.. only doing this on irritated area.

are you using a wafer with a lot of convexity.

also change frequently before leaking starts to happen. even if its only 24 hours.

And try an ostomy belt. It will help get that stoma protruded out.
Posted 1/18/2013 6:30 PM (GMT 0)
Different strategies work for different people. ddd45's strategy works well for her, but personally I had to apply the seal directly to my skin to make sure the seal adhesion was perfectly aligned with my stoma and there was no exposed skin (otherwise I couldn't see EXACTLY how it was being placed and would end up with ulceration)... So experiment with different strategies until you find what works for you.

But yes to everything else she said: make sure to use a convex wafer, change frequently (especially if you feel any itching or pain), and try the belt.
Posted 1/18/2013 6:56 PM (GMT 0)
I did "crust up the skin" the red skin with powder and skin prep layers leaving the rest of the skin alone.
I did put the Eakin seal on the skin and held it there for a while to get it to seal to the skin.
I did use a convex wafer.
Posted 1/18/2013 10:38 PM (GMT 0)
I am having a similar problem as Kazygirl. I had my surgery last Friday.

I am going to see my stoma nurse on Monday morning.

In the meantime, I do find the Hollister Adapt rings hold up really well - at least they did with my previous stoma.

They also have these protective sheets that go under the flange and protect the skin.

Here is a link: www.coloplast.com/products/ostomy/accessories/protectivesheets/

They are expensive but are really nice. Bit hard to get off, I've found.

If I get any good suggestions from my nurse, I will pass them along.
Posted 1/19/2013 12:02 AM (GMT 0)
Are those protective sheets like BIG eakin seals? I think I may have a sample of one from when I had skin sensitivity issues with my wafer itself when I first got my original end stoma. Are they the ones that are as big as a wafer itself? I never used my sample cause I really didn't know how. (they send stuff but don't tell me HOW to put it on or how it works...)
Posted 1/19/2013 12:07 AM (GMT 0)
Yes, it is the same size as your wafer. You can use the whole thing (trace the hole you make for your flange, and then cut it out of the big sheet) or you can just cut a piece and put it over the problem area.

You put the sticky side onto your skin and then the flange goes over top of it. They are really gentle.

I am having big leak problems too. I changed yesterday, and just changed again now. I used a piece of the sheet over the worst red weeping area, my adapt ring and I found 1 convex flange that I had had as a sample. I hope this will hold until I see my nurse on Monday morning.

Post Edited (mom2panda) : 1/18/2013 5:39:33 PM (GMT-7)

Posted 1/19/2013 9:58 PM (GMT 0)
Good Luck Mom2Panda. If the nurse has any new ideas, I'm all ears if you don't mind sharing with me!!! I got some of the best ideas from a guy I work with. He works in IT now (computer stuff) but he used to sell ostomy stuff at a company "like" Edgepark and I'm not sure of the situation since he has never had an ostomy himself, but he mentioned he has changed all three kinds many times over in his "previous life". I'm guessing from what all he has said he used to work in a nursing home.
Posted 1/20/2013 2:53 AM (GMT 0)
One question!!! The sheet... Can I treat my RED HOT burn with the powder and skin barrier layers as I have been before I stick the sheet to it? Or would that lessen the life of the sheet? I'm scared to "stick" anything to that raw skin without some kind of protection like the layers.
Posted 1/20/2013 8:44 PM (GMT 0)
You can vote me into this club. My output is going straight under the wafer, none in the bag. I was up until 5am changing my bag all night. My skin looks horrid. I feel like I've never had a stoma before.
Posted 1/20/2013 10:51 PM (GMT 0)
Please go to your ostomy nurse and get some burn cream. We used the burn cream lightly on the burns, covered it with duo derma (a bandage designed to protect burns) and then did the usual routine everywhere else. I had to switch to Coloplast bags and wafers. It was not as comfortable as Hollister or Convatec, but it stopped the burns right away. I think the secret was their version of an Eakins ring provided a much better seal. I bought the seal in a stick form and only broke off the amount I needed. It needs to be kept air tight so it doesn't dry out.
Loop ostomies are tough to take care of. I hope you all feel better soon.
Posted 1/20/2013 11:48 PM (GMT 0)
Sorry, I didn't see your question earlier.

I didn't use the powder before I stuck the sheet. I haven't changed since I did this, though I can feel that it is still sore. I'll see what it looks like tomorrow when I change with my nurse.
Posted 1/21/2013 6:25 AM (GMT 0)
I had not heard of the Coloplast adhesive seal. Let us know what you think of it.

My red burns were actual pus filled acid burns from body waste. I also started using Questran twice a day to lower the acid level of the waste. I still use Questran when output gets a little too acidic.

I would imagine your ostomy nurse would say to place the Coloplast adhesive seal over the Duoderm burn bandage. I think I changed the bag every day until the burns were healed.

You all have my complete sympathy. I clearly remember how awful it was. At least it will be over soon when you have your takedowns!
Posted 1/21/2013 8:22 AM (GMT 0)
Subzeromambo -- OT--Does walking/running increase your output/bathroom breaks since takedown?
Posted 1/21/2013 1:01 PM (GMT 0)
mystique i am sorry to hear of your problems.

Sounds like you have tried everything, and i cant believe your scn are not helping you.  mind you i have experienced similar.

Can i suggest Hollister Adapt barrier seals code 7805?  they do not dissolve like the eakin seal and absorb moisture.  also convex coloplast sensura one piece code 15701.   This is a popular product. this one has a transparent split back.  with the adapt on the back it should push your stoma out more, although is the stoma actually 'stuck' onto the skin - i am not sure what that means - or that your stoma is just very flat almost level with your skin.

i understand what skin burn is like i experienced it for a whole month it is a miserable time. all you need on it is the powder they give you.  you could also try Orabase after you have used the powder.  you just squeeze it onto the raw bit and dont touch it or rub it in.  that is what i used for raw skin. 

all the best hope it helps a bit x

Posted 1/21/2013 6:32 PM (GMT 0)
Thanks for the ideas!!!

What I mean is imagine the stoma opening as a mouth. the bottom "jaw" or bottom half the opening healed to the skin instead of having any stoma tissue between the skin and the output hole part of the stoma.

Fun right? See why I'm having issues?
gggrrrr 4 weeks and one more day of this. If I don't lose my mind first. Oh wait. I lost my mind a very long time ago, before I ever got sick. :) (sorry. I have to make fun of it and laugh or go nuts)
Posted 1/22/2013 10:39 AM (GMT 0)
gosh no wonder - that is terrible. it is what i thought but thought how could that happen. then no wonder you cannot get on with things. roll on the take down. if no take down then a re-do of the stoma. yeah i understand anyone would go bonkers.. x
Posted 1/22/2013 3:39 PM (GMT 0)
Hi mystique2,

One more thing that my nurse suggested was wearing a belt.

Convex is also preferred, but because my surgery is so recent, the convex is causing more separation of the skin from the stoma.

Your stoma is well healed, so maybe a convex wafer with a belt would help.
Posted 1/23/2013 5:52 AM (GMT 0)
Using a convex wafer now. Talked to ANOTHER ostomy nurse, she said that because skin where the stoma is more flat than anything, the belt could actually cause the wafer to fail. Convatec is sending me more samples and we will see how they work.
At the rate I'm getting samples, I could go the next four weeks without 'buying' any if I'm lucky.

Take down is 4 weeks from today! Hoping and praying it doesn't take me and my JPouch long to get to know each other and work right together. I've had enough complications and issues with the previous two surgeries and hoping 3rd one is the charm! :)
Posted 1/23/2013 5:58 AM (GMT 0)
oh.. and how my stoma healed this way... My GUESS (repeat, GUESS. I'm not a doctor) is that they took out the little rubber bridge too soon. My stoma area was still a hot mess when they cut the rubber tubing they were using for a bridge on the 3 or 4th day after surgery and I just don't think it was healed enough. I actually was developing an infection around the main incision that was the discovered later. (and, like a lot of us, that main incision was only like 2 inches from the stoma)
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