UOAA Discussion Board

If you don't know I use a thin layer of paste, then a protective sheet first then apply my pouching system on top of that.

So what I did this time was instead of applying the second level of thicker paste to match the pouching system, I used a clear silicon based flexible water proof sealant.

So it's binding to my protective sheet, not to my skin.

I'm looking into remedies to provide some flexibility instead of using stiff paste, which may be causing my issues with bag longevity.

I'm getting stress on the paste which may be causing leaks, so I'm thinking more flexibility is in order.

So a thin layer of paste on the skin should be more flexible, then the protective sheet which is flexible, then the flexible silicon sealant, then the stiff one piece appliance which is bent and weakened horizontally so it bends with bending over etc.

We will see how it goes.

Let me outline better what I'm doing.

Illeostmy, near flush stoma, one piece convex, belt and I rinse from the bottom. I'm avoiding two piece because I don't want to disturb the bond and cause leaks, not until I solve this current problem first. I'm trying for longevity here. 3-5 day wear time, 9 day record once.

I have a little leak damage right around the stoma out to about 1/8". It varies depending how well I get the paste to stick and other factors like stress on the appliance/skin. I am trying to get to 100% perfect skin all around like they say In supposed to have. I'm also trying to make the appliance last 7 days on average.

So I clean and dry well using a blow dryer on a dormant stoma.

I apply Flonaze as a skin protectant (it numbs the pain) and I've found that if a generous thick coating poured around the stoma then feathered thinner out to adhesive areas seems to work the best. If I apply a thin spray coat like a lot of these skin protectant products do, then in a case of a leak the pain and damage is increased. Whereas with the thick coating I feel it but it's a mild irritation which is indicating a leak but doing less damage to the skin which is harder to heal and bond too later.

Once the Flonaze is sufficiently dried I apply a no sting paste a thin layer all around the stoma ensuring it's sticking to the skin. If not it's removed and redone until it's out to about 1/2 inch.

Next I apply a pre cut 20mm x 30mm hole protective sheet and press down. Then I take more no sting paste and fill any gaps between stoma and the protective sheet as it's an absorbent, so I don't want output hitting its edge side. I then use a flat wood stick like a small tongue depressor wetted to avoid the paste sticking to it to mold the paste and press it down around the stoma creating a wall and protecting the edge side of the sheet. I have scar tissue which I trim the sheet off of that and apply a thin layer of petroleum jelly to the scar to prevent adhesive sticking to it cause it itches like crazy if I do. I put some t paper in the belly button hole to absorb moisture.

Now I use a prepared convex with a 30mm x 30mm cut hole. I fold it in half horizontally and hit the folded edge with a cigar torch to get it to weaken some and be more flexible. Also so it's better angled to meet my belly fold and flex as I stand up and sit.

I remove the backing and apply the silicone flexible waterproof sealer around the hole but not quite to the edge as I don't want a bond to my stoma or blocking it.

I crunch and bend the convex to match and apply, pressing down make a good bond.

I next apply extra adhesive strips 50/50 on each side covering the hook areas, meeting at the bottom. There is a small gap at top but output never leaks upwards so it doesn't matter.

I apply the belt and make sure it's tight but not painfully so.

I next take care of the fistula stoma with a little cleaning out with the stick a little petroleum jelly on a low stick tape and lightly cover. It may goo out, so the tape isn't on hard, just lightly covered.

I usually take a nap at this point as this gives time for everything to set up.

Again the reason I'm using the silicone sealant is to provide some flexibility as the paste seems to stiffen over time and may be causing my leaks and tears to the skin. So the thinking here is I use a thin layer of paste on the skin, thus it should remain more flexible and no paste on top of the sheet to fill gaps between the appliance rather use the silicone sealer for that as it's not touching the skin.

I do have an extremely well put on bag this time, due to being very systematic, I can just feel it and it's a good feeling.

As long as it makes you feel good.
I find less is best. All I use is a ring.
If it leaks. I change. Usually lasts a week.
I never use paste.
R.

I agree with Mysticobra - Eakin seal, wafer and pouch....and when I change only a little soap and water....no chemicals, etc....

So far I've been fortunate.
I use soap and water and a spray releaser.
As long as I get it thoroughly dry before applying the next one I'm fine.
It lasts.
I use Harry's soap. Doesn't seem to leave any residue.
But as I said. I consider myself fortunate.
We all as individuals finds what works best for us.
And some of us can get away with soaping it all up. Some can't.
Richard.

Shamrock.
How long have you had your end ileo?
Not critical of what you do. But you go to great length to put an appliance on.
Just wondering.
Richard.

Mara.
Using a seal has been a lifesaver for me.
It's wonderful to have confidence in a change.
A ring does that for me. Gives me confidence.
Now it doesn't last 7 days every change. But that's just
how it goes sometimes. If I get four and it leaks. I'm happy.
My stoma leans to the left. I'll call what I see after it all healed years ago is
stoma skin. That leaves a space between my skin and the actual stoma.
And that's where it will leak. Everytime. If I don't put the ring
on the skin. And not the "stoma skin".
If that's understandable. Hard to explain without showing it.
Richard.

Richard - I am pretty low tech as far as my ileostomy. I change in the shower unless there is a some emergency - not often, thank goodness. After removing the appliance, I use a little soap and then rub off whatever material remains from the seal and wafer. I do that gently, of course. I usually end up with a little ball of whatever it is - about one-quarter inch in diameter. I try to keep hold of it so it doesn't mess up my tub....I sort of believe that using no chemicals has kept my skin in good condition all these decades...fingers crossed, of course.

I think I found the issue.

Coloplast uses a four hook belt and I was bending the wafer but not the belt part also..so tonight in the car I bent all together and it seemed to relieve the pressure.

It's definitely pulling too much.

And you know I appreciate your responses and what you use and all, but you don't explain why it's any better than what I'm using nor does it solve my problem with the belly fold.

Laying in a bed all prone is easy, but sitting is a whole another situation, the devices and the paste, rings etc. are not flexible.

So I would appreciate some helpful information to solve my problem instead of just recommending this or that without saying why it's better.

Thank you.

Mara wrote: 2024-08-27 20:00:53 Richard - I am pretty low tech as far as my ileostomy. I change in the shower unless there is a some emergency - not often, thank goodness. After removing the appliance, I use a little soap and then rub off whatever material remains from the seal and wafer. I do that gently, of course. I usually end up with a little ball of whatever it is - about one-quarter inch in diameter. I try to keep hold of it so it doesn't mess up my tub....I sort of believe that using no chemicals has kept my skin in good condition all these decades...fingers crossed, of course.

We have to do what works for us. As individuals.
We all have a way of doing things.
I have to use a spray releaser to get my wafer off.
Omgoodness. It would tear my soon up if I didn't. The spray just let's it drop off.
That was a major worry in the beginning of my journey.
I was making my skin a mess pulling it off. That also is very sticky.
What chemicals I do use is minimum.
That little ball is I'm thinking what's left of the ring.
That little bugger is sticky. I use adhesive remover wipes.
I know. More chemicals. But I get as much as I can or actually all of it off
What your doing is fine. Even less. But that's good. It works for you and that's what counts.
before I get in the shower. I also found it sticks to toilet paper. What's left of the ring by the stoma.
and comes off too. Of course being gentle is key.

Yes, Richard, of course - we do whatever works for us and I don't know why I have been so lucky for all these decades and not to jinx myself but my ileostomy is the least of my health issues....

Yes, that's what the little ball is, I agree......

I have never used a belt as Shamrock4806 said above or maybe I did use some kind of elastic belt but not in the past couple of decades.

I really don't know how I would have dealt with the problems that some people have here or other places where I interact with people with ostomies ........

Sometimes I think it must be because of two surgeons - the one who did my original ileostomy and the one who did my revision.....

I agree with the ostomy being the least of out problems.
I'm the same. It works. Works well. But other things come up as we age.
You've had yours a long time compared to me.
Same. I'm glad I don't have issues with my ostomy except the occasional leak.
Otherwise it works well and I can deal with other issues
Not with just myself. Others too.
Yes. Surgeons. I had a good surgeon. I think.
Some don't. We are lucky. And I don't think you'll jinx yourself.
Richard.

Yes, I know you are a bit newer with it than me but that goes for almost everyone here except for a very few....

I don't really think the occasional leak is much of an issue as long as it's at home. Other ones are more inconvenient like one I had at the Bastille Opera in Paris a couple of years ago..but s--- happens...

Okay desperate times call for desperate measures.

Since I had to replace my day old bag I decided to get drastic. Apparently the wafer convex is stiff, so I cut the largest hole my scissors could, 60mm easily.. What this did was make the wafer much more flexible. Put on my thin coat of paste around the stoma like before and the protective sheet.

Then I blow torched the wafer section so it folds in half easily. It stays about a 22.5 degree angle.

Next removed the backing and put a bead of paste around the edge of the huge hole, then pressed on and removed to create a impression, then covered the sheet inside the hole with paste to protect it as it's absorbent.

Then replaced the wafer section (what is left of it) and pressed the whole mess together. Put on the extra adhesive strips and the belt, the belt with now bent to an angle instead of straight line it was from the box.

So now I have maximum flexibility and very little, if any convex effect.

We will see how this goes.

And sorry if I seem a bit cranky, if you have been trying and trying and finding out the product your using, even supposedly the best, isn't solving your problem and nobody seems to understand or can relate. It's a bit frustrating..but I will persevere!

Okay, I lasted through the night without any leaks.

It seems I can get away with not using a convex and thus avoiding the stiffness it requires. I guess with enough paste, anything is possible.

The real test is to come, sitting in the car all day driving.

You see guys and gals, what I need to know is how something works so I know if it will work or not with my situation...I've stated my situation but yet I received no solid suggestions.

So basically I had to substantially modify my own equipment to get it to work in my situation when millions of others likely have the same situation as mine (we are all human after all) and someone somewhere has a product that already solves this not for me, but countless others because we all bend over at the waist. Forgive me if I offended any of those bed ridden.

I refuse the notion that leaks are something we just have to live with as fellow sufferers.

Leaks should NEVER happen. The skin around the stoma should be as clean, clear and fresh as most of the skin in our bodies.

In my mind if your suffering from leaks, it's something the makers of these appliances are doing wrong.