Finding the Perfect Ileostomy System - Combining the Best Features

Replies
15
Views
667
amymariefred
Nov 28, 2023 3:14 am

2.25 months post-op ileostomy.

Hollister - hate the pouch. Too crinkly and loud. The “cloth” covers pill. Like the flange for a 2-piece. Need a barrier ring for my irritated skin along with stoma powder. 

Coloplast - love, love, love the pouch. Best closure with Velcro and tuck away that flap. Tried the Mio Sensa Click and it was too difficult to attach to my flange. Tried the sticky disk version and it seemed better. Still have to use a barrier ring; otherwise, my skin is irritated plus stoma powder. 

Convatec - love the moldable wafer instead of cut-to-fit. Still feel like I need a slim barrier ring and stoma powder for skin irritation. Cloth bag also pills. 

Why can't they combine the best features of one appliance with the others? Are there other brands I'm missing? I'm on my third sample from Convatec and my second from Coloplast. Hollister came with me from the hospital. 

All I want is healthy skin. :)

Happy-but-Newbie
Nov 28, 2023 7:35 am

Ciao Amy, 

I guess that's what we all think ehehehe... that we would like to create our own perfect combination out of different brands and products... I have yet to find a perfect one, but my Hollister does not pill, so I stick to that although the flange might be... gentler.

As for needing rings or stoma powder... I have a retracted stoma and a urostomy... of course, the part that is most retracted is the lower one (to make things easier eheheh) so I had lots of skin issues at the beginning... the ring was no use as it dissolved into a gooey mass, but powder and extended flange stay helped me.

Now I put some powder even if my skin is intact, as I have the feeling it helps keep my flange stay put for longer somehow.

You'll find out what works, but unfortunately, you have to pick the next-to-perfect... as combinations are not possible, I'm afraid :-(

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 36,000 members who truly understand you.

It's not all about ostomy. We talk about everything.

Many come here for advice or to give advice, others have found good friends, and some have even found love. Most importantly, people here are honest and genuinely care.

🛑 Privacy is very important - we have many features that are only visible to members, ensuring a safe and secure environment for you to share and connect.

Create an account and you will be amazed by the warmth of this community.

Bill
Nov 28, 2023 8:09 am

Hello amymariefred.
I think the reason we are able to try so many different devices is that the manufacturers are on that quest to find the perfect solution. Unfortunately, the 'one size fits all' solution has proved to be elusive with regards to stoma gear, so what we have are lots of pretty good experiments.
Eventually, I gave up with seeking the perfect solution from 'outside' and started DIY experimenting to find a solution to suit my own needs.
What I concluded was that it is the baseplates that were 'wrong' for me, so I made my own and simply stuck the manufactured devices onto those.
This has worked well for me for years. However. I suspect that my experimentation and solutions would be much the same as others, in that they might not be suitable for other people, in the same way that not all devices are at present.
My 'gut' feeling is that the baseplates should be made for each individual (bespoke) and then almost any of the manufacturer's devices can simply be stuck to them.  It should not be beyond the realms of modern technology to create baseplates that 'fit' perfectly, with 3D printers, but I don't have access to such equipment, so mine are made out of plastic skirting boards and whatever is handy in my shed! 
Perhaps some enterprising person might one day offer a service to make such things as 3D printed baseplates from photos of our stomas.
Now there's a thought!
Best wishes

Bill    

Axl
Nov 28, 2023 9:21 am

Hi Amy

I use Braun Flexima Convex

Doesn't pill, no noise, and has a very strong hook and loop closure that works great. I have tried some others but always come back to the one that does everything for me. I'm not sure if Braun is available in the U.S.

Beth22
Nov 28, 2023 10:07 am

Hi there,

They could be doing so much more than what they are doing when making a bag. I believe the problem is they have people that do not have an ostomy creating them. They should have someone with a stoma making and creating them. I have thought of 100 different ways a pouch and wafer could be and should be tweaked and worked in different ways that would work for so many body types and different stomas and abdomens. But yes, I believe we are all in the same boat. We all want systems that do what we need and what they should do. With your skin irritation, is it all the skin where the wafer sits that's irritated, like little red dots? On your hair follicles?

 

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Play
Justbreathe
Nov 28, 2023 11:59 am
Reply to Happy-but-Newbie

Exactly - kinda like everything else in life - some are comfortable in a small car, some need a van! I'd prefer a small Mercedes, but Medicare says I can't have one 🤬 - had I known this 25 years ago, I would, at 80 years old, not still be driving around in a 5-speed stick shift automobile! 🤪. Jb

kittybou
Nov 28, 2023 12:13 pm
Reply to Justbreathe

At least you don't have a recalled Kia Soul with no fix to the problem! 🫣😸

Justbreathe
Nov 28, 2023 12:20 pm
Reply to kittybou

Whoa - I will now stop complaining about my 25-year-old stick shift!

IGGIE
Nov 28, 2023 1:29 pm

The perfect system is the one that's right for you. I have found mine. Hollister Bag 18183, Hollister Wafer 13505 already cut to my size, and the Salts Stoma Seal with a collar my size is 29mm so part number RC29. I tried so many until I found this setup. What's right for one is wrong for the other, so keep experimenting. Regards, IGGIE

Cplumber
Nov 28, 2023 2:39 pm

You're all right. I just thank God I get to wake up and see my 7 kids, 11 grandkids, and go work on someone's dirty toilet one more day!

I will be praying for you, amymariefred.

Jayne
Nov 28, 2023 4:23 pm

Hello AmyMarieFred

 

As you have mentioned the Nordic suppliers - and nothing from the UK - I am unfamiliar whether Salts supply to your location.

Have you tried Salts - a company based in Birmingham, UK?

.... I used to use Dansac products which suited me fine and also Coloplast [so far as I am aware Coloplast is the only manufacturer to use zinc within their backing plates which is an excellent bonus for irritated skin].

 

For something rather different, however, I find that Salts Confidence range of bags are unique.

They have a great silky finish to them and also come in black, skintone and white - ideal to tone with one's underwear.

What is especially good about them is the design and adherence of the wafer - as it allows for a great deal of movement and its adherence qualities are exceptional - all without skin irritation. The design flexibility is not produced by other pouch manufacturers.

 

So as not to promote advertising on site I have not included a URL ... but the four-letter company name and the co and uk will find their information for those interested.

 

Hope this may help.

 

Good luck - never settle for second best - keep searching!

 

Waves from the green hills of Mid Wales, UK

Jayne

 

Ben38
Nov 28, 2023 4:57 pm

Yes, for myself, I've had an ileostomy for well over 30 years and, to be honest, never had any problems with bags. I know I'm very lucky, except I hated the plastic slam-down closure clips that were our only option back when I first had mine. They used to dig into my unmentionables and bring a few tears to my eyes, lol, and I often dropped the plastic clip down the toilet. My current one, Salts Confidence Natural, I've been using for over 10 years and never had any problems or even one leak. I know I will have a leak at some point; that's just part of bag life.

AlexT
Nov 28, 2023 5:11 pm
Reply to kittybou

There's always a fix. The easiest fix is to sell it and buy something else. 👍

AlexT
Nov 28, 2023 5:14 pm

Do you know how much personalized ostomy supplies would cost? 😳 The best any of us can do is find what's currently available and works the best it can, like anything else any of us use.

xnine
Nov 28, 2023 9:55 pm

Hollister has quiet wear bags. No crinkly sound. The only ones I have seen were closed bags. 18323 Red box.

whackjob74
Dec 07, 2023 1:02 am

I found a good combo using the Coloplast Sensura Mio Click plate and pouch with the Hollister ring. I add the curved tape to the top edge to increase wear as I find they tend to start peeling along the top edge first. I also use the Coloplast barrier wipes which prevent all skin irritation for me as well as the Hollister adhesive remover to take the plate off as my skin goes crazy if I just peel it off regardless of the brand used. The Coloplast bags hold their shape, are the quietest, stay close to the body, and are the easiest to empty/clean. I can get up to 9 days without having to change the plate if I stay out of the hot tub lol.

I found Hollister very loud and it hangs off you like a rock in a wet garbage bag with anything in it. I found they sound like a baby diaper and even my family could hear them every time I moved.

I tried the Convatec as well and they were less crinkly than the Hollister but the click system is almost impossible to click together and the material is not as nice as the Coloplast.