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Help! Changing wafer twice a day. Almost suicidal. Please...

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(@raspout66)
Joined: 6 years ago
Posts: 29
Topic starter  

Nurses come to my house daily or twice a day to change my wafer! I’m at the end of my rope, REALLY. My skin is very irritated, almost tomato red and it SEEMS like THIS IS THE PROBLEM. However it seems no one can handle the problem and we tried what seems to be everything under the sun: glue and powder, protective sheets, rings, Coloplast and Convatec wafers, what not... The dam thing never sticks more than one day, sometimes LESS! Moreover I cannot afford to buy this much material and I won’t last long at this rate. Yeah I ask my stomatherapist but she can’t see me before Wednesday ( 3 days from now) but I’m not sure I will last that long either... And I asked for samples from 2 companies too but I have a few samples left only... I’m contemplating selling my iPad, this is SERIOUS. I also told my pharmacist to ask my doctor for some Ativan...Hospitals in Quebec won’t taccept me for changing a stoma to help. Next step might be calling 911 to get me into a psychiatric ward...

Any idea? What can be done?



   
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(@squeakyandliza)
Joined: 7 years ago
Posts: 1066
 

I am so sorry you are struggling like this. I have had a rough time with leaks and wafers not sticking. I have also had the tomato red skin with white blister looking sores. For the skin, Marathon works for me. It is like a liquid bandaid. It works great, but is spendy. Hopefully your ostomy nurse will have some she can use on your skin when you see her. 

I am using coloplast sensura mio wafers. Since they do start pulling away on the outside of the wafer, I use Hollister wafer extenders to help hold it in place. I also have to use paste around my stoma, due to wrinkles and creases in my skin. The rings don’t work for me. Even with all this, I still only get 2-3 days, but still sounds like it would be an improvement for you. Don’t check into the psych ward just yet. 😀


-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


   
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(@john68)
In Memorandum
Joined: 9 years ago
Posts: 2059
 

The changing 2 a day although necessary is not helping. Making sure the skin is completely dry and the wafer warmed up a little will help. Be careful not to over do powder etc. Some of the product recommended by Liza is a good idea, let dry and apply wafer. Is it mainly a leak problem burning the skin or an allergic reaction to the appliance?


ileostomy 31st August 1994 for Crohns


   
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(@chrisandbagpus)
Joined: 6 years ago
Posts: 254
 

Might A two piece system help? changing the wafer frequently might be causing skin irritation if you have sensitive skin.

I found the glue on the Dansec bags irritated my skin. I had to really clean all the residue off with release spray. I found the sensura mio wafers the most friendly glue wise.

Se my other post about going "Commando for a while" allowing the skin to breath etc.

 

Hope you get to see the stoma nurse ASAP there are a lot of products out there throwing everything at it isn't the answer to my mind step back  and try simple is the answer

Wishing you well


Colostomy Jan 2020


   
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(@archieb)
Joined: 6 years ago
Posts: 31
 

@chrisandbagpus

Hey Chris, knock on wood I'm not having any skin problems although some areas around my new stoma are sensitive but I'm only getting 2-3 days as well. They've set me up with the Convatec 2 piece system (because that's who they have a contract with). When the wafer has given way closest to the stoma I can smell it and its really frustrating me. I actually did the commando thing yesterday for 40 mins, had a shower and really cleaned it up around there to see if I could get a better seal. Cutting the shape is challenging also mine is slightly oblong (round with a piece that is slightly off round), when I use a guide it looks like I have space then I put the wafer on and it looks tight....again super frustrating.

I hear ya brother, frustration, pain or soreness and skin irritations normal not normal all overwhelming at times to figure out...trying to keep from getting discouraged is tough. Wish I had some advice on how to get more supplies because it is expensive and this trial and error thing has you going through more than an average for sure....plead with your ostomy nurse to provide you more. 

 



   
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VeganOstomy
(@veganostomy)
Admin
Joined: 12 years ago
Posts: 4721
 

@raspout66

I am very sorry that you are in this situation and hope that it does get better for you soon. Believe me when I say that sometimes we get into a spot where our skin is just terrible and nothing seems to work. Last summer, I had skin issues that took a few months to fully take care of, but it was scary and frustrating not knowing how/if/when it would clear.

Posted by: @raspout66

...we tried what seems to be everything under the sun: glue and powder, protective sheets, rings, Coloplast and Convatec wafers, what not... The dam thing never sticks more than one day, sometimes LESS!

This could be part of the problem. Personally, I would "go commando" (I'll answer your other thread for more specifics) for as long as you possibly can to give your skin a break. 

Did your stoma nurse have any idea why your skin is like that? Does it look like you have a yeast/fungal infection or is the damage caused by leaks? Does it look like you might be allergic to any of the products you've been using?

Here's what I would do in that situation without knowing anything else (and knowing more would help to narrow down options). 

  •  Go commando! Yes, I'll hang a small kitchen catcher bag off my waste to catch anything coming out of my stoma and I'll just air it out - for hours if possible and as often as I can. This alone can help considerably, but it does require patients and obviously you'll be stuck at home while doing it.  
  • Switch to a "regular wear" wafers until things get sorted out. They will be more gentle on the skin and are designed for daily changes. 
  • If you're having difficulty removing the wafer, use an adhesive remover spray. Ripping it off your skin will only make things worse. 
  • Simplify. Use only a wafer and bag if you can. Every new product/layer you add can be problematic and make it harder to troubleshoot this. 
  • Get a second opinion if possible. An undiagnosed yeast infection or allergy will not go away just because it was missed - it has to be treated and quickly if possible. Unless your nurse is 100% certain that you don't have any medical issues related to this, I would see what another stoma nurse has to say. 

One product you might want to consider, even just temporarily, are non-adhesive ostomy systems. Nu-Hope makes one, but there may be other companies that also have them available. You can read more about them starting on page 66 of their catalog: https://www.nu-hope.com/wp-content/uploads/2018/12/Nu-Hope-Product-Guide-2018-Low-Res.pdf

Please stick through this. Every problem has a solution, but not all solutions are quick to find. 


Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@raspout66)
Joined: 6 years ago
Posts: 29
Topic starter  

« Switch to a "regular wear" wafers until things get sorted out. They will be more gentle on the skin and are designed for daily changes. »

What company makes these regular wafers? I can’t see what you are taking about. Do you have a link...

 

Thanks.

 

P.S. I’m French, you can post in my language if you wish...🤗

 



   
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VeganOstomy
(@veganostomy)
Admin
Joined: 12 years ago
Posts: 4721
 
Posted by: @raspout66

What company makes these regular wafers? I can’t see what you are taking about. Do you have a link...

Unfortunately, each company will call them something else, so it's hard to know unless they list it or you ask. Sometimes they call them "standard wear".

For example:

Hollister calls their "regular wear" products "SoftFlex" or "FlexWear" and their extended wear is "Flextend" or some others (they have several lines of products!). 

Coloplast has the "Sensura", "Sensura Mio", which are regular wear products.

B. Braun has its "Flexima 3s" regular wear products and other lines that are extended wear. 

It may be best to ask the company which of their products are designed to be removed more often. If you use an extended wear wafer and remove it every day, you will have issues. 


Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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