Why yes it would be great. 

When ever I speak to the manufacture of the products I use I give them  my list of wants.  Don't know if they do anything about it or they go into the delete folder but figure can't hurt to let them know.

How hard can it be to make bags in more than two colors????? 

Have a good afternoon.

cygo

Posted by: @chelly

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Wouldn’t it be great if us ostomates could compile a list of issues that we go through and for some company to come up with a solution that will work and manufacture them for us? Like a company that would talk to real  ostomates who are dealing with issues with certain things. 

It may not seem like it, due to how slow the process is, but that's usually how manufacturers do it. They'll often consult with stoma nurses, then invite patients to share feedback, and even have small groups test products that may (or may not) hit the market. The process takes many, many years, and sometimes they come up with really amazing products as a result.

But the unfortunate reality is that while we have plenty of choices, it's often a game of mixing and matching, refining our technique, and making tweaks to our lifestyle to get the best results.

Sometimes, when a problem can't be solved from the appliance end, you'll find small companies (often started by an ostomate) fill in the gaps with their own products. This is how many of the stoma guards, support belts, and pouch covers came to be.

Once in a while, you will have manufacturers openly ask for feedback, but I'd always encourage people to give feedback to companies whenever they have time to.

Posted by: @cygo

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How hard can it be to make bags in more than two colors????? 

This frustrates me to no end! I know it's a money game - 100%. The way that the ostomy bag machines are set up, any small change can cost a significant amount of money to implement. And depending on the change, it may need to go through all sorts of legal hurdles and barriers.

And if the manufacturer gets past that, you have regional roadblocks as demands for different markets put pressure on what kind of products can/will be sold there.

I put more faith in the small business segment to solve many of our day-to-day problems. But that's also a segment with a lot of turnover and businesses that are forced to close down. 😥 

Your right. A lot of these small companies that offer solutions are ostomates. And yes they close down after a while. Sad. 
I always give my feed back to reps but I don’t  think they really pass it in to the people that need to hear it. 
it would be nice if our supply companies ( since they see what we are ordering) could let the companies know we are using their supplies. This way they could send us a survey of sort and also add an option for anything else you’d like to add so we could type in whatever we’d like to say. By doing it this way they would have so much feedback in order to change what they need to change to stay at the forefront. Yeah and I suppose it does take years as you say due to studies and the legal stuff. 

I don't think the stoma world is entirely devoid of choice but it's all a bunch of compromises (they give with one hand and take with the other in terms of features).

I'm on the lookout for a new bag because I've got a leaky situation due to parastomal hernia + partial prolapse and it keeps causing my stoma to shape-shift which leaves my skin either exposed (if I cut large) or peeled back and exposed from pressure (if I cut small) leaving me in a bad spot for adhesion. The Mio bags were great - but they can't handle my stoma when it gets huge (Mio's have no XL size), so I got "downgraded" to the old Sensura's - which have terrible stitching that occasionally leak, poor thin adhesive plating, and just feels terrible quality.

I've been browsing other bag makers and there's ones that use silicone rather than the other stuff for allergy folks (Trio) - but the adhesion isn't great (for oily skin). There are Alginate bags that are allergy friendly but feel poorly made, bags that are well crafted (Mio / Salts BE) but aren't suited if you have an unusual stoma, VitE infused / Manuka bags for immunosuppressed peeps that are (again) just barebones as if the patient is an afterthought, and hernia specific bags that are great unless you have unhappy skin.

No manufacturer has worked out that complicated stomas might have poor skin / leaks, so extra adhesion / healing features would be useful. A cynic might say it's because they get a good overhead from selling those powders, pastes and "post" damage products to consider prevention.

My wish list:

Better adhesion! I don't understand why we're still on the same adhesive technology that has existed since stoma bags first came about (sans a couple of tweaks). If they stayed attached in the middle, liquid couldn't escape under and burn us (surely there's newer temporary medical adhesives that would be better).

Aside from that, for the past 10 years people have been able to make everyday objects 100% liquid repellant (so much so you can swim with a phone if using superhydrophobic coatings). Why can't stoma bags be coated internally with something like this? It would prevent output sticking in the bag, it would reduce wear significantly and if liquid couldn't breach the internal ring, bags would last much longer meaning less changing and less environmental waste - again, probably not being done due to the damage it would do to their profits.

Posted by: @cygo

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How hard can it be to make bags in more than two colors????? 

The Trio Genii comes in 3 colors as does the Salts Confidence BE though they aren't the most inspiring, but you can get great (sometimes hilarious) covers for your stoma bag on Etsy so there's that.

@alexanderuk great post! Thanks for sharing into to this what’s on your mind. Yes I was put on the sensura to try and I agree that yes it is flimsey. The filter I think  went real fast and flopped over. I’m in a mio now but always on the lookout trying others. Thus far the mio is about the best in my situation although not perfect. 
I think convatec has moldable technology. Have you contacted them for samples? Not sure if you have them in the uk. Just another avenue to try. 
I have to have a clear colored bag. I’m just one of those people that can’t eyeball through s peep hole to get my bag on right and I have to see what’s going on in there. Always on the lookout for leaks. My worst fears are leaking at work. These adhesives are killing me though. Not that easy to get off but the best wipe I’ve found for these extended wear has been the resolve and unisolve wipes. They claim to get off hydrocolloid adhesive. They do a pretty good job than others but again not perfect.

Posted by: @chelly

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These adhesives are killing me though. Not that easy to get off but the best wipe I’ve found for these extended wear has been the resolve and unisolve wipes.

My recommendation is to switch to a spray. If wipes aren't that effective in helping you gently lever the bag off; a tiny puff of the spray from the top, allowing it to set in for a second and then peel - adding more spray as required works wonders.

@alexanderuk I have some sprays. Brava and convatec spray I use those when the wafer is stuck on. Eric and others told me about those a few weeks ago so I bought some. My main issue is residue. It seems most adhesive removers wanna turn it to goo but those remove and unisolve seem to break through that goo. They are a tad bit oily but I just clean up real good after. Sometimes I will even swipe with alcohol after and then soap and water. 
the mio I can basically peel it off usually lately and then just get the residue off although it seems you can never get it all off.

im so sorry that your having trouble with the hernia and the partial prolapse. That has to be quite challenging. I had3 hernias that were fixed last year. That alone was a challenge trying to keep a leak under control so I can only imagine with your prolapse. I hope maybe you can get those things fixed?

@chelly At the moment it's a case of watchful waiting. I have a hernia belt to hold everything in during activity and my prolapse isn't bad enough to need a repair (yet). I had to have a prolapse repaired 2 years ago as it triggered a twisted intestine and a bunch of other stuff (luckily I knew something wasn't right so I got to the hospital with enough time for them to save my life).

I would love a stoma bag that grips around your stoma and resizes along with it though (rather than you having to cut the bag - or the ones that mould themselves into a shape after they settle in). The peristalsis of my stoma is such that it's never settled on a specific size and even when the stoma nurse has tried cutting a bag (after measuring my stoma), when she goes to put it on my stoma has shape-shifted and she frustratingly has to redo the thing again because it's gotten smaller or larger so the size doesn't work! Maybe it's because I've got less intestine due to multiple surgeries, but this stoma won't stay still long enough to size correctly - we need strong elastic around the opening, haha

@alexanders wow! That has to be really hard for you. Yes, if it keeps changing size I guess even rings or barrier sheets won’t work at this point. I too was under watchful waiting with my hernias and then it happened…. Bowel obstruction. They had to fix them then. 
do they know what’s causing your stomas to prolapse? You said this was the 2nd  one. Is it the hernias causing it? If I run across anything that might help you in your situation I will come back here to post it  

Interesting topics here!!! What I would like is more along the surgical product  lines then products.  I'm very pleased with products at this time but the one request I'd have product wise would be to have the OSTO -E-Z VENTS already attached to the bags & scrap those useless charcoal filters. Ugh!!!  Talk about a money making gimmick! 

Just one point... I recently saw a Stoma Nurse, my 2nd encounter in 14 yrs! Lol! She told me that the stoma nurses are working with Gov't to have M9 covered by B.C. Medical. I understood some provinces here in Canada cover it already.  Anyone out there covered for it?? 

Surgically... this is huge in my eyes... I think there needs to be some kind of sterile sheet or film Or something that can be placed in and around the remaining intestine & organs to prevent the formation of SCAR TISSUE  adhering bowel to bowel or other organs & even to the abdominal muscle walls after surgeries. This is a pain issue that I feel  desperately needs resolving...somehow. 

@dlkfiretruck they won’t cover the M9 in the US either. They don’t consider it a medical necessity but honestly I cannot go without it at work. I’d hate to stink the place up!! Lol!! L

@dlkfiretruck Only thing I've seen along the surgical route is this https://ostomycure.com/ It appears to be some sort of replacement for bags by creating almost a plug for your ileostomy - so you can literally open the flap and let the output pour into the toilet when you want. Bags can be attached too if you need them. Seems like a pretty neat idea for avoiding skin issues though it is in clinical trial and there are some no-go's like Crohn’s (maybe due to inflammation) and potentially also complex cases like prolapses (closing issue?) and hernias (weak support?). So maybe not for everyone but could be a game changer for some.

Posted by: @chelly

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do they know what’s causing your stomas to prolapse? You said this was the 2nd  one. Is it the hernias causing it? 

I have a genetic disease that's triggered a connective tissue disorder (which affects joints, tissue & vital organs) - so I can blame the prolapse, twisted gut and hernia on that. Short version: I'm held together with duct tape. haha.

I wouldn't mind so much if I could get these stoma irritants under control. The hernia is minor enough that a belt works atm so that's technically managed. It's the prolapse causing sizing issues so it's a pain in terms of leaking / burns which needs addressing.

Problem is the UK health service is a mess right now (government caused not the doctors / nurses fault) so seeing a doctor in a non-emergency capacity is near impossible and my stoma nurse (who works for Coloplast) appears to have more time off than Santa Claus! (Downside of having the nurses work for the companies that sell the merchandise we need - cost cutting.)

@alexanderuk oh gosh I’m so sorry about the current health system flaws in your country. Do you have convatec in the UK? They are a pouch  manufacturer as well and they have Ostomy stoma nurses who will do phone or virtual appointments at no charge. I did one before in my bathroom with my phone on so they could see and they had me take off my bag so they could see and everything. It’s a wonderful service they offer.

@alexanderuk I guess convatec is in the UK. Maybe give them a call and see if they offer the stoma nurse virtual visits in your country. Im attaching a screenshot of the numbers.

That’s a great route to go from Chelly. Convatec also have an online site called “me+” Google and it should provide excess to patient and nurse contact 😀

Can I add another wish to the list?

I'd like a more accurate way of measuring stomas! The current method of poking some cardboard holes around an already angry volcano just waiting to erupt is medieval at best. Especially if your stoma isn't round (like mine). Even more so if it has an uneven border (like mine does at the base).

When I had a happy little stoma before the hernia I'd just get a ruler and use side-by-side measurements to get accurate sizing, now it's so puffed I can't see over the darn thing easily the only thing I can guess is either I need some Callipers, a 3D scanner, or to use the LIDAR feature on my phone to 3d print a shape every time. haha

Either way, someone needs to come up with a better sizing method that works for everyone!

@alexanderuk  ... Alex, some time ago I suggested to someone else with a hard to measure stoma.  Its a process that I use for my own capital D downward shaped stoma that seems to enjoy changing shape periodically also. It is very frustrating!! 

*I take a piece of parchment paper (because of a water resistance).  *I  trace a circle on it bigger then I would normally cut for my stoma using a plastic from an old wafer.  *I trace around the edge of the plastic from an old wafer & then cut a completely round hole in center of the old wafer plastic about an inch larger then I needed normally.  *I trace that plastic circle onto the parchment.  From there *I use a ruler & mark lines like you would to cut a pie into 12 or 14 pieces or more depending on your need for stoma size & awkward shape.  The more awkward the more pie slices giving a better fit.  *Then cut those lines just to the edge of the circle from the center with an exacto knife or small scissors.  From there *I place the parchment over my stoma & fold back each wedge & gently press the paper folding it along the edge of my skin by the stoma.  Then *I remove it, wipe it and dry it.   I've learned to tape the bent wedges down for added strength & then *trace that shape onto the back of the wafer on my next pouch.

BE SURE & MARK THE TOP OF THE PARCHMENT so its placed right on the next pouch. 

I hope this is helpful. 

Linda

@alexanderuk good point!! Those cardboard measuring tools hurt and yes a volcano ready to erupt! I’ve had it happen. Lol I love your humor!! Thank you for the laughs I needed that! 😁