We need a new bag design!

[Shamrock4806]

Okay listen up ostomy companies!

We need a bag that we can drain from the top through the bag and into the toilet. This rinsing from the bottom is too precarious, stinks or just putting up with continuous stink of not rinsing is absolutely disgusting.

Next paste and rings are melting and running, (over 75-80° F usually) leaving skin areas exposed to output. I've had to add ridges in a circular pattern (using wafer hole cutout pieces) around the wafer hole set back about a 1/8 inch to keep the paste from sliding.

Belts. Totally a waste of time and effort when the paste or ring is melting, squeezing the paste or ring out so now the wafer is digging into the skin and causing leaks and graneoulmas.

Night time and car trip drainage option. The drain-able pouch needs a connect system to drain into a larger canister that can be placed on the floor next to a bed or between ones legs when riding in vehicles, trains or other forms of transportation. It's very physically draining having to go without food on these trips because the bag will constantly fill up and one has to stop on the side of the road every five minutes to dump. Not to mention getting up a few times in the night (even with good diet control) to drain the bag of even plain bile when nothing has been eaten in hours.

Excessive water and toilet paper use with bags. Because of a lack of an external canister, water and toilet paper bills have skyrocketed. I'm using one roll of toilet paper a day and then at least half another one on bag change days. Some people's sewer and garbage bills are a multiplier of ones water use so the more water used the higher the sewer and garbage bill is every month. I'm currently, despite barely eating to have enough energy, going to the toilet at least 15 or more times a day with about 2.5 flushes per visit because of the smell of output offending others. Odor drops etc. don't work and too much trouble, won't get to the top of the bag, rinsing is necessary and difficult up near the top of traditional drain-able bags. Two piece are especially disgusting, gets output outside and one just can't rinse it out into the sink that others use. (Note Imodium causes me to pancake occasionally so that doesn't work).

With a canister system after one eats they can relax and hook up to the canister wait until the digestive process has finished then disconnect and just rely upon the bag only to be more mobile etc. The canister can have the same sort of top flush through design as to leave hardly any residue to promote bacteria growth. Also it could have gel packs or pills like used in toilets to neutralize odor and bacteria.

A top through rinse-able bag would also be easier to add anti stink drops and wash pancaking material away from a stoma before it blows the water off the skin.

The current ostomy design is severely outdated and we sorely need newer design to address our daily needs better.

I'm too old to bother, nearing my end of life, so it's not like I can address these issues with my own design, sell it and all that.

So someone reading this, take the initiative and build the world a better mousetrap.

Thank you.

[Mara]

Interesting, but everyone does not have your issues, Shamrock4806...I certainly wouldn't sit on a train or other form of transportation with a connection from my pouch to a large canister...I doubt anyone else would like that either....in your own car/truck that's a different matter...

I just took a 12 hour plane flight and I think I emptied three or four times and I ate two meals and a couple of small snacks plus juice and tea. Basically I emptied my pouch when I had to urinate.

Nor do I have what I would call excessive use of toilet paper or water....

[Shamrock4806]

You obviously don't have a high output illeostomy.

I could use the high output ileostomy bags with the larger bag and the spout, connect a tube to a homemade design canister but my output isn't always liquid (despite my best efforts) so it clogs. I've already been through all this with a few product support people at ostomy companies. The spout needs to be wider and thicker, an oval like shape (like drain-able pouches) that can insert into a connecting tube and the bags not so large (standard size options due to weight).

And quite a few times I've taken a plane only to sit on the runway for 2-3 hours waiting for take off and unable to leave my seat. A bigger bag wouldn't help in my case, more likely to come off due to the weight.

I'm basically trapped in my house 90% of the time because I have to eat and I have to be within very short distance to a bathroom to dump several times after every meal. I've come sort of an expert on food and drink types and portion control as to reduce problems, but I can't always prevent pancaking (which can force a wafer off in minutes) or slow down output any what so ever less I starve and that produces plenty of bile anyway.

And what about people that are bedridden and have to rely upon others to dump?

While in the hospital and conscious I would help the unavailable nurses and dump into a cup myself and sit the stinking cup of output on the table offending the entire floor with the smell. A canister system would avoid all that. Plus the nurses complained they were tired of having to dump my bag all the time and many quit because of my condition. I don't want nurses to quit. We need them.

So a slight change to the bag design so the flipped out drainable system can connect into a tube and have a opening on the top and a more narrower design so rinsing would catch material and flush it away so the bag remains as clean as possible. It's old spew that stinks, fresh spew often doesn't unless something that stinks on its own was eaten, like asparagus, oat cereal or fish.

I pancake off eating one mashed up with butter sweet potato for crying out loud (I obviously don't eat them anymore).. If I don't catch it within minutes the wafer will blowout especially when paste and rings (don't stick as well) just melt in the heat (anything over 75° F..)

But I've mastered keeping the bag on good for a solid three days consistently despite the running paste but can't help thinking that perhaps indents or ridges in the wafer bubble area could do a better job of preventing paste or rings from sliding due to the heat and gravity.

If I'm suffering like this in +75° F weather I can only image what those in higher temperature environments are going through.

And I can't touch too much juice and certainly no caffeine what so ever less I get a runaway diarrhea situation where I'm dumping almost constantly for several hours as the body goes into this never ending cycle. The only way to stop it is to stop eating and drinking anything until it does, leaving me severely dehydrated and fatigued.

If I knew I was going to go through this for the rest of my life I would have opted to perish on the operating table. But I keep getting up and fighting back at it everyday but nobody can do what I can and if I become incapacitated then who will be able too? Not many, so a canister system and a flush through bag would help them a great deal as well.

[ot dave]

Shamrock,
I empathize with what you are dealing with.... I went through something similar shortly after my surgery. I think many of us did. I've offered suggestions to you in the past. I don't know if you tried them, or just simply dismissed them because you don't think that I know what I'm talking about.
I will die on the hill that I think that you are using too much to get a pouch to stay on. I've read all of your attempts to get a bullet proof system, which I'm not sure truly exists. I know you have a difficult stoma. But, all of these layers only create more opportunities for weakness in your pouching system. Again, I think the paste is probably your biggest hurdle. You sound like you are attempting to use it like mortar. Paste has no effective adhesiveness to it, and likely shouldn't be used between barrier rings. The pouches (at least mine do) work better when heat is applied. In fact, when I use a hot tub, my pouch gets so sticky, that it's occasionally hard to remove. I use a hair dryer to warm up my flange before I place it on my skin because it makes it more malleable to place over skin contours, and it makes it activates the adhesive qualities of the flange. I live in an area with intense humidity in the summer, and sweating has little to no effect on the adhesiveness, again, it tends to increase the adhesiveness. But, I'm not using paste or barrier rings or a combination of the two, which again, I feel is making your system significantly weaker.
For me, (and I have some contours, dips, and divots) I don't use anything under my flange. Multiple benefits to that are that I don't worry about runny paste. I can feel when something is trying to get under the flange. I can "see" weak spots forming along the edges, etc. etc.
I will note that I use a two piece system which makes emptying the pouch anywhere with limited supplies significantly easier. I am easily able to get water to the top of my pouch with the two piece system to rinse it out with water without any issues.
I guess what I'm trying to say that many times, less is more when it comes to pouching.
I hope you find a solution...

[Shamrock4806]

Thanks ot dave,

Unfortunately I have two graneoulmas, one on top of my stoma where it sticks out the most caused by the bag rubbing on it and another on the same right side at the base of the stoma. Thus I can't use a deep convex directly on the skin, I need to float my convex up and off the top of my stoma and put 2 stacked wafer cut out pieces behind the peristomal graneoulma to protect it from wafer contact and then smother it in paste to shield it from pressure.

So now I'm improved again hopefully by putting two stacked wafer cut out pieces also on the left side belly fold (as it likes to blow out there) and then a single layer of wafer cutout pieces around about 1/8 away from the wafer hole to reduce paste running.

I want to take a plane trip and unfortunately my canisters of spray adhesive remover cannot go with me, so I explored other adhesive removers and found Neutrogena Oil Free Eyebrow Makeup Remover that seems to do a really good job of removing paste residue before washing the skin well with water only afterwards in the shower. However I haven't yet removed this wafer yet to see how well the paste has held onto the skin yet.

So I'm working at it from both ends, from the wafer side keeping it from sliding less and also on the skin side as well.

I understand what you mean by less is better as bringing the convex down closer to the skin means I can use less paste that won't run as much. However I've tried rings and they melt just as bad as paste does and don't hold worth a dam, why I'm using wafer hole cutout pieces. At least with paste I can put three full beads around the stoma and cover the entire 2" width of my convex bubble without spoiling the adhesion with my naturally oily fingers like what happens when stretching out a ring.

With the paste I squeeze it on, don't touch it and the first thing it hits is the wafer or my peristomal skin, not my fingers.

I'm really hoping this Eye Brow Makeup Remover works well because it's a liquid, I can get it locally, so I can pour it onto a wad of toilet paper and really soak it into the paste residue to fully remove it. The spray adhesive remover from the ostomy company wasn't cutting it. Might be that's been my problem all along, the skin not being adequately removed of old residue although it feels like it is.

With the new improvements I now get a steady 3 days out of a wafer and the leak wounds are just perhaps an 1/8 of an inch here and there around the stoma. I'm being more attentive to change as soon as I feel any irritation. Unfortunately the graneoulma irritation was interfering with my sensitivity to the leak wound irritation.

And it appears it's true, when I rinse, if I feel cold on the stoma area it means I do have a leak, it just perhaps hasn't gotten to the pain stage yet. So at that point I quit eating or drinking and just wait until the stoma has finished spewing out to do a change.

[Shamrock4806]

But, I'm not using paste or barrier rings or a combination of the two, which again, I feel is making your system significantly weaker.

For me, (and I have some contours, dips, and divots) I don't use anything under my flange. Multiple benefits to that are that I don't worry about runny paste. I can feel when something is trying to get under the flange. I can "see" weak spots forming along the edges, etc. etc.

I have a belly fold with a near flush stoma (and graneoulmas) which precludes me from just using a wafer directly on the skin. In fact not even protective sheets work without barrier paste.

Paste remains flexible and does carry some adhesive strength, especially when I put three bead rings around the stoma covering the width of my 2+ inch convex bubble. Plus of course wafer adhesive and extra large barrier strips.

My bag stays on pretty good, no belt needed, I can shower daily now no problem. Haven't gone swimming yet but would likely pick the ocean as a test run less it comes off.

I still have some slight leakage after about 2.5 days where the paste finally gets eroded away is the best I can figure what's occurring. If I could reduce that then I would switch to a two piece because the bag would get so nasty it would require changing it out periodically and just leave the wafer on for a week at a time.

So far I've learned to ooze the paste out over the stoma some, not to cover the hole or the wafer hole, but to deflect the output away from the skin some. It eventually wears away about the end of day 2 so then I'm just running on the paste on the skin for about a day then it leaks.

So if I could create some sort of more durable open top dome that I place over the stoma to deflect the pressurized corrosive output from contacting the paste less, I could get a more decent bag wear time.

The dome could also double to keep the bag from contacting my graneoulma on the top of my stoma.

[GeorgeS]

I'm with Dave. Less is more, especially with the multitude of layers and pastes.

I would talk to your ostomy nurse and get that thing repaired, extended. Is there anything they can do to prevent or dull the pain sensation at the stoma? I doubt there is anything to avoid the granulomas.

The only time I use a ring is when I need a Ceramide to heal the irritated skin. I tried many pastes, but I never found a benefit.

Ultimately, I found the SenSura Mio Convex Flip 1-piece drainable to be superior to the SenSura Mio Convex Flip 2-piece Click. The space under the click ring becomes soiled, and an odor emanates from it. The 1-piece without that lasts me 5-7 days, opposed to the 2-piece, which lasts 3-4 days, where I have to change simply due to the odor.

I'm not sure why there is so much emphasis on rinsing. I'm assuming it is to prevent skin burn from the fluidity of the soil or odor. Having a colostomy, my stool is typically thick, rarely fluid. Sometimes I look forward to a good flush, though! I probably had an experience similar to what might be your normal end of April, when I had a bad reaction to a milkshake while driving for many hours. Within an hour after that shake, I had stopped to empty it three times, nearly over capacity, risking it ripping off! I know vendors do make the high-capacity pouches that you surely use.

[Shamrock4806]

Less is more

I doubt there is anything to avoid the granulomas.

I know vendors do make the high-capacity pouches that you surely use.

Even if I had a revision and stuck the stoma out further it would do no good because of the belly fold.

In fact the stoma would rub on the inside of the bag more that it already is.

Mine graneoulmas will dissipate or shrink as long as they don't come under any pressure by anything solid, why I protect them by floating the bag off the stoma one and using bits of wafer cutout to protect the peristomal graneoulma from any wafer contact, the gaps are filled with paste. Even rings irritate them.

I use a standard size drain able pouch, but I went through my old stuff and found a high output bag, it's quite huge and certainly would serve my purposes except it's a one piece with a spout so I couldn't rinse it to reduce the odor. Plus I do pancake despite my high volume so that spout would clog right up and then I would have to resort to squeezing it out like a cake decorator.

I live with others and can't be having this bag stink up the place like I was when a first time novice, the stench was absolutely horrendous and drops etc didn't work that well, so I resorted to just plain fresh water rinsing and it cuts down the odor considerably.

The problem is rinsing from the bottom which it's difficult to get around the top of the bag, why I think bags should be more of a flow through design that I can open the bottom, open the top and pour water right through it and rinse it (and any pancaking) completely right on out and into the toilet leaving no output behind. I could also add odor drops through the top which would cover the entire interior via gravity.