UOAA Discussion Board

Okay disclaimer first.

Any of my experiments are exactly that and may not be suitable for your situation.

I'm documenting my experience here to learn as well as others can learn from these experiments. Also for entertainment purposes.

Edit: This experiment failed...

Okay I have a near flush stoma in a belly fold that isn't there when lying down but does appear when bending.

I've been using a one piece convex with a strong four hook belt, Flonaze (nose stuff) as a enzyme wound pain reducer and skin protectant, no sting paste, a protective sheet and extra adhesive strips all around.

But alas I ran out of protective sheets, and my last wafer on was just skin protectant, paste and the one piece. Well it lasted a whole day, the shear damage from the stiffer convex was obvious, my skin wounds doubled in size.

So what I'm thinking what is going on is this, the stiff convex, despite my horizontally bending the wafer to fit better and be more flexible in my belly fold is causing shear damage, loosening the paste and causing stoma output to leak underneath.

The protective sheet I normally use (with another layer of paste on top to marry with the wafer) was protecting the skin and allowing the wafer shearing to occur on top of the sheet, thus protecting the skin from the burning enzymes.

So since I didn't have any protective sheets on hand, I decided to experiment.

I took my adhesive barrier strips, since they are curved and have tapered edges, cut them to fit around my stoma, but just a hair away from it. One on top and one on the bottom covering my enzyme burn wounds, then another on each side. Then on top I placed a little no sting paste and jammed it around the stoma and protecting the edge of the strips. Then a thicker layer to marry to the convex wafer and smashed the whole mess down using my medical tape tube as it's just thick enough and oval to match my stoma.

So my objective here, since my burn wounds are now twice as big, is to provide protection from the paste pulling on it as well as any new stoma output. If any wafer shear occurs that hopefully it's transferred on top of the strips much like it was using the protective sheet.

I also used antibacterial dish soap around the stoma to wash each time it spewed in the shower followed by conditioner. Naturally to kill any infection caused by the digestive enzymes and to moisture the skin. A lot better than using iodine or alcohol. The wounds seemed to dry well to the touch after blow drying and didn't weep like older attempts.

I of course gave a generous coating of skin protectant and dried well before applying the strips. No paste underneath this time, just along the edge where the stoma is.

I need these wounds to heal and I've never had my wounds get so big when I used the protective sheet, they often were small. So I'm thinking the stiff convex is not the way to go in my case. Neither is using much paste on the skin.

Dave here suggested that thinner, stickier and more flexible wafer membrane may suit my needs better.

The barrier strips are much thinner than the protective sheet and have that tapered edge, and as long as the skin is dry and heated, they stick very well. So I'm giving it a shot and see how it goes.

I am using the belt still of course. And using Tums dissolved in water (takes awhile) to use as a bag flush and leave some inside for a enzyme neutralizer. It helps keep any burning (and the smell) down, but doesn't eliminate it, just delays it. I might be hours away from home so this works somewhat to keep me from screaming my head off.

Stay tuned!

Day two and it seems to be holding good.

Took a hot shower with three strips of waterproof tape covering the top of my bag, seemed to work good.

There is a slight ache under the strips around the stoma where the burn wounds are but it's a healing ache and due to movement, not burning caused by a leak so I assuming it's holding.

Edit: I assumed wrong, it was a leak, just not bad because the antacids water mixture was killing the enzymes somewhat, lessoning the pain.

Laying down relieves the ache, movement and bending over or sitting aggravates it some. But it's not a deal killer, those wounds were bad and I expect it to be achy while healing underneath.

I'm definitely leaning towards using very little paste touching the skin from now on. I'm thinking as it cures it loses it's adhesion or flexibility and thus causing a leak.

Edit: Mistake, paste needs to adhere well and cover damaged skin around stoma, no other way about it.

So we will see how long this bag holds.

I'm happy with a good bag on.

Edit: Except it wasn't, just an illusion.

Day 3 morning

Seems fine except for the tight skin ache I was feeling before. An occasional burn feeling last night after a big lunch but then quickly subsided. Unknown if it was a alkaline pain from the antiacids or as a result of the enzyme stoma spewing. Small leaks may be caused by stoma movement when discharging larger particles I suspect. My mostly liquid output (from diet control) usually doesn't present a problem unless it's diarrhea then the dam thing won't stop and impossible to put a new bag on. It gets really old sitting in the shower for hours on end.

I couldn't risk taking the bag off because I still had a lot of food to digest still and yes it took hours, so I just suffered with the slight pangs here and there.

Took a hot shower this morning to see if the bag would come off or present a problem before eating breakfast, seemed to be fine.

The ache seems to be where the enzyme burn wounds is healing under the adhesive strip and only under movement.

I'm hoping they heal up perfectly so that the next application will adhere to perfectly good skin and keep it that way from now on.

I'm not driving very much now, just a few blocks here and there, mainly resting in bed to battle a small cold.

I think my long driving days are over.

So result so far, bag is somewhat uncomfortable during movement but not painfully so much that it needs to come off.

Day 3 noon

Okay, since yesterday's lunch was a bit of a pain I decided to take the bag off to see what's going on under there before having my biggest meal of the day.

Seems the top wound has healed but the bottom one not. Yep I took another sweet wonderful hot shower again today.

I think my heavy squishing with the tube is causing issues. So this time I repeated my steps but put paste underneath the adhesive strips, ensuring the wound was covered and sticking and gently pressed down as to keep everything down and not coming up.

I think what's happening is either paste and/or the sheet/strips are being pushed up by the stoma as it extends itself out. So this time I tried to prevent that by pressing around on top of the strips to marry paste to skin instead of doing it through the wafer.

Applied more paste on top to marry to the convex and just gently pressed down. Put the extra adhesive strips around like before and the belt.

This time the stoma was clearly visible through the bag when most other times it was partially covered by oozing paste. I think that's been my problem.

The last two days in bed has assisted with my antacid water enzyme neutralizer keeping up around the stoma area and keeping the leak pain down, which was important because I ate a large lunch and the bag kept filling up over and over again, so removing it would have meant spending about 10 hours in the shower while it spewed and I would be crying from the constant pain. Even with water running on it it still hurts, I have to use antibacterial dish soap followed by conditioner to cool the burn. It's not been a very pleasant experience.

And anyone who says paste doesn't have any adhesive qualities needs to rethink things, I have my metal scissors coated with it and it won't come off.

This stuff sticks to anything, unfortunately not wet skin.

Wish me luck.

Day 3 afternoon

New bag on and definitely needed paste, a thin coat about a 1/2" around stoma covering the enzyme burns wound and ensuring it stuck well to the damaged skin. A tiny bit of stoma adhesive to assist. Just like they instruct. Just no way about it. It's specially designed for that purpose and the mere adhesive of the strips or protective sheet just isn't tailored for stopping the enzyme skin attack. Likely likes eating the adhesive.

So then I applied the barrier strips and gently pressed, ensured it didn't ride up along the side of the stoma.

More paste on top to marry to the convex, pressed gently. Applied a lite coat of petroleum jelly to my scar, then the extra barrier strips around and the belt.

So it seems my previous tried and true method is the way to go. Except I'm using cut XL barrier strips instead of the protective sheet. Maybe the protective sheet, because it's one big piece, is bubbling up here and there when I did the tube press. The barrier strips pieces are in sections and thinner.

Again the objective using protective sheet or barrier strips around the stoma (using paste) is to ensure a good visual skin bond and deflect wafer/paste shear off of the skin. Leaks seem to occur between wafer and whatever it's pasted too. So if skin, then a burn occurs faster and more severe.

If a leak occurs on top of a protective sheet or barrier strips as im using in this case, then it tends to run off the top to my uncovered (skin barrier only) scar tissue in the center, or just stops and dries up. So this has been extending my bag wear time. That combined with my digestive enzymes bag flush also has extended the bag wear time because the pain (and the smell) isn't as brutal as normal.

So it seems I'm unable to stop leaks, but I've been able to minimize the effects, the extra barrier strips around the outside also work well to contain a rare full blow out type leak from getting all over on things.

I can say this, the methodology of just putting paste or ring on a wafer and just sticking it on may work for the short term but it's easy to miss and leave a gap where the stoma juice can start eating the skin and cause a wound which is harder the next time one needs to put a bag on. One needs to apply paste or ring to the skin first to ensure it sticks or it leaks right away.

What I think we need is entirely a new bag design and I'll outline it here in case someone in the industry wants to pick it up.

A wafer section that combines a protective sheet and protects the skin in case of a blow out.

A accordion like flexible flange tube that connects to the bag wafer portion. This will absorb shear.

The bag wafer section is just as large as the wafer/protective sheet section thus once installed extra adhesive barrier strips can be placed all around to contain a blow out type leak. But ideally the flange shouldn't be of such poor material to break in the first place as the two are joined at the factory not by the users hands.. It's leaks under the protective sheet section that is under users control and tend to leak.

What I'm thinking is the paste is getting so hard and brittle it cracks with the flexible movement and causes leaks. It's not forever flexible like painters caulk is

Four hook belt to minimize movement and strengthen the bag holding contents when full.

Anyway, going back to bed. Good night.

After reading that I'm happy with a single permanent ileo.
Just put a ring on. Wafer. Snap the bag on.
And don't think about it for seven days..
I as I have said before. I am very very fortunate
not to have to go through a long process.
Or have leaks. I do occasionally. But not often.
Even then I just repeat simple steps.
Sorry you have to go through all what you have to.
Richard.

Yea it's like they did this purpose, making me suffer so I would be forced into getting more surgery.

Doctors

I got it licked, it's just I feel the need to experiment and those experiments fail occasionally, but I do learn things.

I'll go 7 days with a bag on, occasionally.

Pain is a powerful motivator.

But I'm onto something with this antacid water flush and bag enzyme neutralizer thing, I've been laying in bed sick for the last few days and I had a small leak or two and didn't know it.

I suspected, it did ache a little, but it wasn't painful.

Since I was laying down, the neutralizer was up around the stoma like pancaking and neutralizing more of the output thus it had less effect. Gave me time to wait until the stoma quieted down to do a bag change without standing in the shower for hours on end.

If I can find a way to neutralize all stoma output as soon as it comes out, then even small leaks wouldn't be a bother anymore.

That's really all I'm experiencing, small leaks. The major blow outs are rare.

My change day is Sunday. Today.
Whether I need it or not. I change every seven days.
I see it will last longer when I pull it off.
It takes me about a half hour to get a good shower and change.
If it gets busy it takes a bit longer.
I just stand over a trash can lined with a grocery bag.
Just drops right in if it does. Usually.
I've had it act like a squirt gun. That when it's a pain. In the ass.
So it's caused by coffee or too much water prior to changing..
It always calms down so I can finish.
I don't think I could stand in the shower for an hour.
I'd get out and apply mine. And have done that before.
But I have a different situation than you.
Not sure. But I think when you say more surgery it's one of two things.
Either remove the colon and give you an ileo.
Or hook you back up if that's possible.
If it were me and it was to remove the colon.
I'd go have it removed and get the ileo.
I would want to spend all my time doing what your doing.
But. That's a personal decision that only you can make.
And I don't fully know what yours is.
A double barrel ileo? If that's it I don't know where they go from there to improve your situation.
Richard.

P. S.
This is just my personal ramblings.
Opinion.
I've had mine like 8 years plus and haven't seen a Dr in over six involving it.
It just works. But I come in and read here alot.
And I figure if I can help in some small way I would.
Alot of people here are way more educated on all this than I will ever be
But one thing I do know. We each individually have to find what works for one self.
Trial and error. I've had alot of that.
But I'm now in a spot where it just works with what I do.
I went through alot (decades of trial and error and pain) to get where I am.
So I'm staying put. Lol.
Richard.

Yes, I agree with Richard - we have to find out for ourself what works. I change usually once a week also on Sunday. I don't eat or drink before so I rarely have anything coming out....
I hope you can find the method that works for you, Shamrock4806. I'm really not understanding why you have all the burn issues. I can't recall ever having anything similar....even a number of years back when my stoma got pretty flush before I had revision surgery...
Best of luck!!

Thanks everyone you've been a great help.

I've been off coffee for the last several days just in case the intestines are not compensating well enough for the lower pH. It's like it just expels it right away anyway because to the body it's poison or something.

Since I've been homebound, I've been working on my schedule, eating habits etc. and even taking daily hot showers.

I've been eating a lot more for lunch knowing in advance I have a good bag on and to rush right home right away as the bag will be ballistic for several hours. So small meals all the other times gives me maximum bag change opportunities.

I'm back on my tried and true method but using the cut barrier strips between the two layers of paste. I don't know why this helps, perhaps the hydro sheet whatever is absorbing and swelling to slow leaks or perhaps it provides some flexibility since the paste grows rock solid after awhile.

I might experiment with using something different for the second paste layer to be more flexible as it's not touching the skin. I don't know, right now I just want to heal up for a change.

I've also read that heat, from say a heating pad, could be effective to kill digestive enzymes as they exit the stoma.

I've haven't been feeling too energetic lately, I'm eating well and taking my vitamins, but feel sluggish. Perhaps because of the lack of coffee.