Some insights regarding extended wear

I have had to remind several ostomy nurses of the following facts:

The top layer of your skin is called epidermis has a top layer of its own called the stratum corneum It is essentially dead. (It is The armor that is your first layer of defense against any kind of infection)This top layer of skin is constantly being replaced.  Normal healthy dry intact skin that is exposed to air and not exposed to friction is usually replaced in about 28 days.  Peristomal skin is not typically normal healthy dry skin that is exposed to air. Consequently the skin around a stoma typically sloughs much faster.  How fast really depends on many factors: The age of the ostomate; The pH or the moisture content of the skin at any given moment on any given day. etc.

Needless to say it is quite variable.

The amount of time that a stoma appliance will remain intact without leaks is just that VARIABLE.  

Throughout your life as an ostimate your skin encounters changes that are expected as you age.  Your hormonal and oil balance on your skin also change with age.  Throughout the month week and years your pH balance may vary greatly It is somewhat influenced by your diet but also by other things. Throughout the day your pH balance as well moisture balance(perspiration) will fluctuate.  

🚩There is no theory that will allow an appliance to stay on "theoretically" forever.

🙀 When you shower without an appliance on your epidermis around your stoma acts like an extremely thin sponge It does retain a certain amount of water.

Any appliance placed no matter how well it is dried will leak a small amount of water into your wafer. (AKA base-plate) That water will loosen The pectin wafer of your appliance.  Not to worry just be more prepared.

🦪 Consider the possibility that you may need a different brand of appliance as circumstances of your life change.  

I have found that pH balance can significantly affect which brand of appliance will stick best to your skin at any given time. That is all

Now question for you then...what happens then when you get an ostomate that can only use one brand due to being allergic to every other brand? Switching then wouldn't be an option

Hello Beth.

Thank you for what is an 'interesting question.

I have written many times on here explaining that I (eventually) gave up trying with manufactured baseplates for a variety of different reasons. I now make my own baseplates and attach the manufacturer's devices to them. This means that they do not touch my skin and therefore would not be likely to cause any allergies (no matter which device I choose). my baseplate are held firmly in place with a prosthetic glue. ( I presently use Probond, but I have used other brands which are just as good.) With regard to your question, I think that the prosthetic glue would probably be effective if it was applied directly onto the manufacturer's wafers. However, I also use a double-sided tape on my baseplates because that makes the cleaning of them much easier. The prosthetic glue is then applied to the tape, which in turn adheres to the skin. The tape I use is 2.5 inches wide so it more or less would cover a normal sized wafer. It is made in Korea and is called  Sookwang. I used to use double-sided carpet tape which stood me in good stead until I found the seemingly better alternative. 

When you have allergies, life becomes something of a continuous 'experiment' to find out what works and what doesn't.

I hope that my experience might be be of some use to you in searching for alternatives

Best wishes

Bill

Hi bill,

Thank you for that some stuff to look into if I start having trouble with the one brand I can wear. My only other problem to try that stuff is too I am also allergic to tapes as well , certain glues etc.. just like I can't use the paste in a tube or silicone , powders either lol I am allergic to a whole lot my skin is super sensitive, even certain shampoos lotions, soaps creams etc. Lol 😂 

Thanks O & W. That was useful and is appreciated.

Hi O,

  Great post!  So why aren't all ostomy nurses trained the same?  Meaning why don't they know the same stuff?  Obviously experience is a great teacher, but I'd expect all in that profession to know the same 'basics'.........and the composition of our skin sure sounds like something basic they'd need to know.  What am I missing here?

thanks again,

;O)

Bill, I'm SO curious….how in the world do you make your own baseplate? Probond? As in the adhesive glue? Sounds like it would be terrible hard on your skin!

Susie

Every other brand when?

What I mean is 40-50 years ago there were only one or two or maybe three brands.

There are a lot more brands than the big three that everybody is mostly aware of There's a section here for products I will double check but if there are not listed more than you have tried I will be surprised.

I'm allergic to the adhesive made by 3M.

Almost every product in or out of the hospital uses adhesives made by 3M.

And yet I found alternatives.

Initially I had to look overseas.

I can certainly help you find more options than I bet you have tried Post a list of every brand you've made an effort with and I will post a list of more that you can still try.

I will also drum up some resources for overseas purchase.  Japan in particular is much more accepting of their ostimates.  I post more on that as soon as I can find pictures.

You're so right about the life of an ostomate in Japan.

Attached below is a PDF of the New South Wales ostomy journal from 2019 and on pages 6-8 there is an article about an Australian who travelled there for a holiday.  

Looks like a great place to visit that looks after folks like us! 

https://www.ostomynsw.org.au/docs/2019_Nov/Ostomy_Summer_2018.pdf

What a cool link I've been looking for this everywhere I'm fairly certained I read it initially and it kind of propelled my interest.  

Thanks again so much for posting

Ohh Nooo it's Mr Bill lol

This is amazing!! Is there anyone that could film you creating this?  I think it is nothing short of brilliant. If you can't film the whole creation process perhaps you could at least show us one appliance change in video?  I put forth Is there a place to put up pictures and videos that might be worth sharing like this.  I don't mean YouTube I mean someplace for us ostomates.  Something just for us who belong to the club so to speak.  Lol I know it's an honor we all wish we could live without but we can't.  I once told a patient who had a prolapsed stoma that that was his ribbon of honor and his appliance was his medal.

I have found just like allergy shots that desensitizing your skin does kind of automatically happen you have to wear it there is no choice you would become immobile if you did not have an appliance and immobility kills more people than any disease process on the planet.  

I said in one other post that no human being is prepared to have an ostomy I promise you it is true.

Because everybody teaching this stuff originally came from caregivers who were trying to cope with family members or close friends or colleagues or even patients that just got dumped in their lap.  Even Norma Gill the very first WOC nurse in the world did not have an ostomy.  

I have been flat out told my people who studied this in school, that what I tell them is true, is not true.  That's why I made the statement at the beginning I've been trying to explain basic anatomy and physiology to nurses that should know better.

Not too long before I became an ostomate (and mine was an emergency by the way) I decided to encourage my patients by wearing an appliance. But no ostomate had to point out that an empty bag just isn't the same so I added a little water and a little more water throughout the day.  It may have been clear and didn't look like crap but I wanted to show them that I was trying to commiserate with what they were living with and doing the best that I could under the circumstances.  All but one of my patients appreciated the effort If not the execution.

It was only a few weeks later maybe a month, month and a half when I was lying in bed fighting for my life soon to become a permanent ostomate

Oh I forgot to mention they're only eight WOCN schools in the whole country (US) If you don't happen to live near one it's awfully hard to pick up your life and move there for 4 years.  All the rest of them are virtual online programs.  Gee I wonder why they are not all accredited by the WOCN crediting board.

Since you have to be bachelor's prepared before you can even start a WOCN program you usually have something of an established life by then a spouse and children who don't just want to pick up and move somewhere else so Mommy or Daddy  can go to school for 4 years.  And finally in order to become certified they have to go through a mentoring process and very few hospitals wish to pay for this.  Very few students who've already been through a bachelor's program and several extra years can afford to pay for it.  It's like a physician's residency.

Many of us did our best at mentoring on our own dime on our own efforts without any support just because we believed in our new generation of WOCN nurses.

Not being defensive just saying.  I learned more from other ostomates even decades before I was in ostomate myself.  Then I learned in school that their focus is on the common.  But there is nothing common about any one ostomy it's really more of an art than the science no matter how you do it.  

There's a reason why we have the reputation of being the MacGyvers or the jury riggers or the jailbreakers of existing systems to create something that works for our patients.

Most other nurses when they find out that I am a wound and ostomy nurse even retired as I am turn towards me like Wayne and Garth bowing and scraping and saying "we're not worthy".

Instructors in WOCN practice are mostly FAANs an honor few of us can achieve before we're almost ready and tired out enough to retire ourselves.  Many of the wound care nurses that I have known in my career work well into their 70s.

Well....thanks for that O&W.  It's all starting to make sense now.  It's not great news........but DOES explain a lot.   Woes us!

;O)

Hello Susie.

Thank you for your interest in how I make my baseplates.
The first step was to think carefully about the problems I was having and then contemplate how to overcome them.

I contacted manufacturer's to discuss the issues and some of them were very helpful. However, they were not able to resolve all the problems. Only after exhaustive enquiries did I decide it was time for a Do-It-yourself approach. At the time I felt that the problems lay, not so much with the basic design of the appliances, but mainly with the wafer that attached (or detached) to the skin. 
I tried a variety of experimental designs and ended up with a simple rectangular device held on by two belts with the manufactured devices stuck to them. This worked well for years.

Then I found that Coloplast did a two-piece irrigation device which was easily adapted to be used with a bag as well as the irrigation sleeve. The large hole was filled and reduced with a bit of PVC skirting board and then glued with a combination of double-sided tape and prosthetic glue.  The whole thing is secured even more with just one belt.

The Probond glue, as with several other varieties) is designed for adhesion to skin for the purposes of sticking on prosthetics, so it is not hard on the skin. However, as with all these things, it is wise to try out some on areas of the skin that doesn't matte so much. this way, if there is an allergic reaction, it doesn't affect the stoma. 

I've been using this approach for about two years and it's suited me fine.  It should be said that I am still experimenting and tweaking things to see if there is anything I can do to make it even better.

Best wishes

Bill  

Hello.

Thanks for the comment and the interest.

Unfortunately, I have absolutely no idea about videos or how to make and submit them. I am often envious at those people who have such skills  But I am not one of them!

Best wishes

Bill

Well I am but I do understand you're reluctance.

If I'm ever passing through that area for any reason I like to sit down to a cup of tea or something

Perhaps you have a tech savvy friend or relative who could assist you?

Hi there,

I actually have tried everyone one.. I did a lot of deep research found the hidden ones that most people don't use and got samples .. then ones in UK won't send to us I personally emailed them and asked. Lol I am one that not only researchs to be aware of all things and since my medical has been quite odd and complicated and lol I fully educated myself and when I kept leaking I tried various alternatives and  every brand and dug outside the box. Coloplast right now is good and the only one my skin will accept. I was making it aware that there are a handful of us that have severe allergies and for us it's not an option to be able to switch if the one brand we can use now longer works anymore. Which brings me to my question then what would we do? Me and others in my situation would unfortunately not have any options. Just something to think about ,the odd ones that are way outside of any type of box of things that would work for other or should work in theory but doesn't.

Thanks for your reply…I'm impressed at your ingenuity. Would love to see pictures and the process! You should write a book ☺️

You would be most welcome and I could show you all the work that led up to my present baseplates!

Best wishes

Bill 

I use the same product I started with almost 50 years ago. It's a Marlen pouch used with a very thick rubber mounting ring. I usually get 7 days wear time. The Marlen pouch is like a thick plastic or vinyl. Because of the thickness of the vinyl and the rubber mounting ring, water does not seep through like it would with the other pouches. I used to get it in beige in a pediatric size because I'm short. But now only adult size in white. This system is the best for me for extended wear. It takes time to put it all together but lasts longer than all of the other pouches. It also has a narrower tail opening which I find easier to manage emptying. I hope they never remove these from the market.

I wish the other pouches were made out of this vinyl and not have such a wide opening. This would make life a dream!

I hope some of the ostomy supply providers are listening. I have emailed and written to them previously and I have never heard anything back.

I apologize it took me so long to reply to this post for some reason this site is a little bit counterintuitive for me and frequently glitches not allowing me to respond which is frustrating however that being said

Of all the companies that I have had any dealings with New Hope was the only one that offered custom ostomy supplies their wocns are pretty familiar with how to make a case even to get insurance coverage but any seal is worth having a life again if you feel like you'd like to send me a message with your process a photograph for each step I might be able to help based on what I see I can't guarantee it but I would certainly be willing to put forth every effort.

Yesterday I was helping a gentleman with his ostomy and his technique is somewhat bizarre and not very effective he was also told he has a colostomy when he actually has an ileostomy.  But like many estimates he's very touchy about his procedure and I won't be able to help him until he lets that barrier down so for now I'm simply observing his technique and making little pointed requests once he feels completely comfortable I told him he can't lay still let me change the whole thing he can just relax and lie there if he allows this I may be able to put some things in place that would work better for him if he isn't constantly watching me and kibitzing.  We shall see.  

Some of the volunteer nursing I do for estimates is done in their own home as this gentleman other people are not comfortable with that and want to meet me somewhere neutral or even in my home which I sometimes allow as well.  Kind of depends on whether I'm alone and what kind of vibe I get.  But if I step by step saw your process I might be able to help emphasis on my emphasis on willing.  If you private message me you don't have to show everybody everything and it ensures I am able to see it instead of being buried in some of the back and forth that takes place on a post