Seeking Advice on Ostomy Supplies - Goldilocks of the Industry

After the spectacularly deep stoma revision, I have had the opportunity to try all the products out there and have much feedback about them all. The lack of products that deal with the particular pouching issues I'm having aside, the bulk of them is just not "just right" for my connoisseur tastes in poopwear.

As a poopwear connoisseur, you'd think I'd like the Coloplast Mio line. The fine fabric bag covering, the complex filter mechanism, the design-forward taupe/gray accented with aqua blue, the rocket-science wafer design, you'd think I'd want to just stop wearing shirts that the world can see this fashionable, feature-rich thing. But no thank you. I don't need fancy woven fabrics on my disposable shit bags, the usual cheapo comfort panels work just fine. And that filter system... There's a video on YouTube of how you can cut it out of the two-piece bags (can't do that with the one piece though) because that ring of foamy stuff just adds more bulk (as do all the other layers of fabric and plastic) and makes it really, really hard to get the poop out of the bag. Plus, I don't do filters anyway. The wafer is so-so to me, causes some irritation, and isn't nearly as flexible as the commercials make it out to be. Their belts.... Seriously? Two connections on each side, total of four, but the little hooks on the belt (which is wider and softer than the Convatec/Hollister belts) are way toooooo small, it took me 15 minutes to get it on one time and then I took a breath - pop, it came undone. Ridiculous. I do enjoy the aqua blue Velcro tabs. They make me smile a little.

Hollister... I wish I could delve deeper into their stuff but my skin doesn't like their glue - sticks too much in spots, immediately loosens in others. I like the feel of their bags, I like their wafer design, and wish I could wear them. Sigh.

Nu-Hope and Marlen: they communicate the disposable aspect of ostomy supplies. Everything feels flimsy like it will leak odor after the first fart. And poop. I really respect Nu-Hope for their work to find solutions for hard-to-pouch stomas, for all the tips they give (like tape-belting), for their wide belts (that have saved me in this post stoma revision time), but their appliances are not made to stay on for more than a couple of days. Yes, they would make a mold for me for custom wafers, but the material just isn't beefy enough to get good long wear time - I need the good hydrocolloid, not craft foam). Marlen: same opinions of the materials. And the two-piece options aren't fab. Well, at least those manufacturers don't force filters; I appreciate that.

I am a Convatec Goldilocks. Two-piece, no filter, moldable wafer - still don't have my revision-of-the-revision surgery date yet (grrr) but I am hopeful I will get to wear my just-right faves with confidence one day soon.

Hi Bellily, sounds like you have been busy trying out different products. I started out with Hollister and have been with them from the start. I am not one that likes change unless it is necessary. They work for me. I guess that is why there are so many different supplies, what works for one does not work for another. I am glad you have found what works for you. Good luck.

Hello Bellily.
I can empathise with your feelings on trying to get things 'just right' with regard to stoma products. I must have tried almost everything there was on the market, before coming to the conclusion that stoma products should be made to measure for those individuals who cannot get on with the 'one-size-fits-all' approach. Although, this comment is not exactly fair on the manufacturers who have made great headway in trying to cater for the many and varied problems which arise in stoma care and management.
My own approach was to figure out what ‘nearly’ worked for me and then I tried to improve on that for my own specific needs.
After years of experimentation, I have developed some devices and routines that suit me and my circumstances pretty well. However, it must be said that very few of my gadgets would be suitable for a mass-market. Hence, I feel that making bespoke appliances would not be profitable for larger organisations. However, there may well be a niche market for skilled individuals to make devices for those who cannot cope with what is presently on offer.
Even though I have my own situation sorted, I am still experimenting for the sake of it, and one of the more promising approaches is to use silicone rubber /artificial skin. The problem I have had so far is that it needs some experience and skill to perfect the techniques and it is quite difficult to experiment with this stuff on my own body. I therefore feel it would be good if I could find a make-up artist who would be willing to apply the skin to my specifications and make me some devices to fit my own stoma.
I will keep trying until I either make something or feel that this is a dead-end.
Perhaps someone else on here has tried this stuff and has some tips on how best to apply it ones’ self.
Best wishes
Bill

Hi lovely, hi Bill.

Lovely, I am happy that Hollister stuff has not given you any reasons to go searching elsewhere - that's wonderful.

Bill, one day I'd like to see some pictures of your contraptions. When you describe them, my imagination tries to visualize but is probably way off. I'd like to see. : )

My revision is next week and I'm suspicious I'll end up with a "deep diving" stoma as well.

We're revising because my abdominal wall wants to close really badly. The fact that my stoma has retracted suggests that when they do widen the opening, it'll only be deeper.

Anyway, hopefully I'll find a wafer that goes deep enough.

Fingers crossed!

Dave

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Dave! Thank you for reminding me of your stoma and its upcoming makeover - fingers and toes crossed that it doesn't plunge too deep for existing products and that surgery+recovery go off without a hitch and with everything turning out even better than anticipated. And that your colon/stoma takes it all with a good attitude, ready to heal and get back to work. Colons are easily offended, may yours not be. :)

Hi bellily,

I am with you on the Convetec! I love all those nice things you mentioned about Coloplast as well, especially the Velcro at the bottom, the ability to fold in half and the peep holes, but I hate that click thing! It never went on right, took me forever and you cannot burp your pouch in a pinch! Convetec has some horrible one-piece and two-piece pouches. One was like plastic and so cheap it caused a red sore on my skin. Horrible but all the other drainable and closed-end two-piece pouches I use are great. Sure wish they would combine the good parts of each for the ultimate pouch! One can only hope! nbsp
New Hope sent me a sample but it was convex so pretty sure it would never work for me! Marlén just sent me some samples too. Kinda weird looking. May look at them later. nbsp
Everyone has different needs and likes, but a quiet pouch would be so nice! nbsp
Just saying! Lol

Puppyluv

Puppyluv56 - "The Ultimate Pouch!!!" Yes, bring it! And soon!

Isn't it a crazy consumer's battle to get all the features we want and need?

Me: Fancy colors and fabrics are dealbreakers if the wafer material/adhesive/shape irritates my skin or mood. And don't force the filters either, buddyroe.

Regarding wafer material/adhesive, I love you Convatec. (And working on re-working your flange shape to fit my weird-ass stoma placement)

Haha! I currently wear the Convatec two-piece and it lasts at least 10 days. I have pushed it to see how long it would last, and that was 18 days! Haha. Coloplast is about the same, but I sure like that nice little white fabric barrier on Convatec! Convatec certainly would speak to me even more if they made something pretty! Lol. Poop is not pretty, that is unless you eat Fruit Loops or beets! Lol. I may have to just draw faces on my pouches to give me that chuckle when I am forced to see it!  
Puppy

I also have some criticism of Convatec stuff:

The accordion flanges - they are a bitch to clean out and retain odor. Ech. Not just right at all.

These are more colostomy issues, not so much ileo. We colos have more solid glories that are more difficult to get out of a drainable bag, they don't "flow" so when they sit on the accordion plastic they just cake up there and seep in. The smell will make you want to change wafers before they need changing.

More thoughts on filters and the 2pc bag/wafer couplings: Puppyluv, you nailed it, those Coloplast snap rings are stupid. The adhesive options are scary - can you burp them? Because a filter-hating colo will need to do that. Because burping from the drainable closure is cumbersome.

Puppy, what line of conduct do you wear?

I can only burp the Convatec two-piece. I don't think the adhesive ones would work without replacing. I tried burping the Coloplast and to my horror, made a hell of a mess! I do irrigate so my output is less than not irrigating although it is not perfect! I too have a colostomy. I just clean that flange a lot to prevent smell and that is a pain in the patoot! I do hate the closure on the Convatec drainable pouches. This has helped me to move to small closed pouch lately and am enjoying them versus the smell of draining!
This ostomy thing evolves! I never get to set on one thing, always something else to try! Lol

Puppy

Convetec drainable pouch 416417
Convetec Surfit Flange 413161
Convetec irrigate sleeve 401912
Convetec Irrigation Kit 401916
Convetec Small caps 401909
Convetec large caps 416406
Convetec Cone 22736

I use all this. Have you ever considered irrigation?

I love the closed-end pouches. The environmentalist in me is in a twist about it, but the convenience wins out in a bougie way (I work hard to minimize my landfill contributions in other ways... but in this way I just don't care).

I'm glad you get to irrigate, puppy. I tried that a few times in years gone by, and my colon isn't having it. I do remember the draining smell very well. :)

Indeed: ostomies evolve. :)

Irrigation for me: made me feel really weak and light-headed, minimal output, angry colon that didn't appreciate being forced to do anything, plus 2 hours and a mess of stuff to clean up.

I have the kit; maybe I'll try again one day soon.

Bellily,

I would try irrigation again too. It is not perfect but most days I have no output! Sure frees me up! I hate to be somewhere and need to empty a pouch! I could never do that anywhere but at home and maybe rest stops and hotels while traveling. I love the closed-end little pouches. (Or large caps) Carry ziplock baggies with me and that pretty much takes care of the smell real quick! Of course, if you are at a friend's, you may have a bag of poo to take out with you! Lol Can you imagine not being an ostomate and you go to empty your bathroom trash and find a bag of poop! Hahaha! Especially not knowing anything about it! I just cannot imagine that! Lol I hate the filters in all the pouches too but still order them. Tried the ones without and was always having to burp. At least with the filter, it is good for a couple of days and then I have to cover it because it will come back on your clothes. Guess a few days is better than none! You would think they could filter the filter so it does not allow poo to get to it, only gas. These scientists are smart and they can do better than what they do! They just don't have a reason to until it becomes personal! Then they would invent the perfect pouch. I told my surgeon I wanted to invent a valve that was inserted surgically and we could all just turn it on when we chose to! Just like we used to do! I wanted him to fund me, he said he was poor! Haha I don't believe that for a minute!
Puppy

You all have made my day by giving me some of your posts to read. I have a colostomy and am a Hollister one-piece gal. Believe me, I have tried lots of other products and my ET RNs at my hospital are grateful for all the supplies I have donated to them. I use a Hollister #88400 with no side tape. It is a soft material and I have been lucky that it has not caused any irritation. It has a filter, Velcro fold-up end, and is easy to empty. I can see when it needs to be emptied. At first, my ET nurse told me to use a ring and paste to help with leaks, and after clearing up my irritation around my stoma, I use the old Head and Shoulders trick and clear warm water, then a spray barrier by Cavilon 3M, and slap on my pouch. Not bad for an old lady, huh? By the way, I have developed 6 hernias and am having surgery this Jan 15 to repair 4 of them. Will catch up with you all later. Everyone have a fantastic and healthy New Year.

Little Red,

Wondered where you have been. Sorry to hear you have those darn hernias. Glad you are able to get them repaired! I am sure it will be a great relief! I just might have to try the Hollister pouches. Never have for some reason. The bad thing is, none of the pouches are compatible so you have to change everything! You know they do that on purpose! LOL I have actually changed to closed-end pouches. When someone said they were so easy, I thought really, for them maybe but never me! Never say never! LOL the drainable are great at home but the closed-end are so much easier and a lot less smelly when you are out and about! I like the easy part about all that!  
Keep us posted on your surgery! Hope you have an easy time and speedy recovery!  
Puppy

I'm with you on the closed-end pouches. Can't live without them! And I don't care if they open up a landfill in the distant future and find 50 bags of poop - just don't care! So much more convenient. And I am so short, I need the mini pouches - 7" vs 9" vs even longer for the re-sealable - which end up hanging halfway down my leg. Just, NO. Been Hollister 2-piece from the start. Tried other brands, and nothing worked as well as the Hollister for me. I am so sorry that the Hollister tend to irritate the skin for some people; I guess I just have tough skin, because I have no real problems at all.

Good luck to all you Goldilocks out there trying to find the "just right" system!

Hi newbie - yes! I don't care either!

Well, yes I do, and I try to make up for it in other ways to balance my quota of smelly trash. When you think about it, disposable diapers are way worse: there are more of them per person per day (usually, not always), they are way bulkier. So I recycle fastidiously and reuse as much as possible, hopefully offsetting the damage.

I really wish my skin liked Hollister. They have some seriously great user-mindful design and materials.

How did it go?

Hope all went well with your revision, Dave!

Please have a speedy recovery and keep us posted! 

Puppyluv

As far as Hollister goes and causing irritation, it all depends on which product you use. I found out, I kept getting irritation from some of the one-piece bags at first, so I tried other makers which I did not like, so back to Hollister. Then I was sent a sample of the 88400 which has no side/edge tape and problem solved. It was the tape that my skin did not like, so if you have the same problem, try some of the bags without that tape.

Puppy, I have been around not posting much, just lurking and reading. Thanks for thinking of me. I am trying to get ready for my surgery (hernia) and the closer it gets, the more of a basket case I become thinking of going under the knife again.