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john68
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July 19, 2018 11:06 am  

Hi FacBFH, That is a nightmare you have been through and no matter how long we have had a bag its still rocks yer world. The problems you and the rest of the users of this product have been going through is not acceptable and it looks like form the posts on the subject it ain,t going to get sorted any time soon, yes it is time to start looking for another product. I am a convatec user any have had good results but their are a lot on the forum who have had problems with them. I am in the UK and I wonder is it something with the products sent to the States!! Have a look through the product reviews Eric has done and try out samples. My best thoughts and wishes to you and all the others having to deal with this.

ileostomy 31st August 1994 for Crohns


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FacBFH
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July 19, 2018 11:24 am  

I am working on getting lots of samples.  I didn’t know this would be so emotional.  It’s been a long time since I had a bag that didn’t stick.  I’ll be ok. Just a process. Trusting in a plan that is not my own.  Just wish I knew what is was!


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Momof3boys
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July 19, 2018 12:33 pm  

Hey FacBFH,

Im so so sorry about your experience that is absolutely horrible, we are already not in an easy situation as it is but add on the fear of bag or water failure; that becomes the stuff of nightmares. 

The second time I spoke with the Cymed CEO he had mentioned that they were dealing with a serious issue with their urostomy products and once that was solved they would then be able to begin working on the colostomy products. I sincerely hope this is true. It’s interesting that this happened with your microskin wafer because they swore absolutely nothing had been changed with that product. Now, I would have no idea if it had been changed because, my insurance company doesn’t realize that I wear disposable bags and they send me 2x as many wafers and a significant less amount of bags. I’ve contacted both Edgepark and my Insurance company, but this is way too confusing for either of them to understand what I’m saying. 

I’ll keep you in my prayers. The joy of going through different products to find one that you like is another nightmare. It’s one thing as a new ostomate trying to find the best product, it’s a whole other ball of Wax when you’ve already gone down that path spending thousands and thousands of dollars to a company that has a reliable great product then rips it out from under you without so much as an email stating changes. 

I apologize for the rant. 

Thanks for sharing! I really wish that soon this thread will start saying changes for the better are happening! 

 


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dogtalkerer
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July 20, 2018 2:25 pm  

FacBFH,

i may have a home remedy for you.  with almost a full box of cymed microskiins left, I have returned to coloplast.  not happy about the move,  but better than the current product coming from cymed.

Ive been taking the 4 inch x 5  1/2 inch wound dressing film and cutting it  into 1 inch x 5 1/2 inch strips then applying  to the coloplast flange as an edge seal tape.  the film sticks very well the coloplast flange and almost too good to my skin.  probably similar to the brava, little harder to apply,  but more than 1/3 less the cost, plus its ultra thin.   basically the same material as microskin, but maybe even stronger.

even if cymed changed back today, I would only re-order if i had a guarantee all current products were pulled from shelves.   if the current products stays, who knows when you might get the "new" product?  I can't imagine anyone out there currently planning to re-order the current product? so the shelves could stay full a very long time.

even now, the samples I tried from coloplast seem superior to what I ordered from them, as if they too have made a product change and i ordered the older product.  

jp


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FacBFH
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July 22, 2018 12:03 am  

jp. I am not sure I understand bc I have been using these micro skins for so long.  Can u send me pics of what you do?? Thanks 


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dogtalkerer
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July 24, 2018 4:51 pm  

well, what I do, I do not think would work on an existing cymed bag.  I switched back to coloplast and use the incise film to tape the bag edge to my skin where failure points are developing.  some call it picture framing the flange edge.

i can post a picture, but I'm not using tape yet on the current bag, only use it if I see the bag starting to pull away from my skin.


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CoachDavid
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August 8, 2018 12:59 am  

I found this thread while doing a Google search for "is Cymed going out of business".  When they changed their pouches to something that pretty much has a 100% failure rate, I figured they were just liquidating old product prior to shutting down the business.  I had no idea that they actually thought people would continue to purchase their products.

I sometimes wonder if Cymed doesn't realize that they're messing with people's quality of life in a big way.  I think that manufacturing these types of medical supplies requires a certain level of social responsibility toward the people using their products.  

Because Cymed has had some issues with backorders in the past, I had been building a backup supply of barriers and pouches.  I had worked up to about a 5-month supply, which I figured would get me through any future supply issues with Cymed.  However, to my surprise, I opened up a package a month ago and noticed that even though the box was the same and the item number was the same, the pouch wasn't what I had been receiving previously.  I tried these new pouches, and every one I tried failed and leaked after a few hours of wear time.  What sucks is that if I had any idea that they had changed their product, I could have gotten a 5-month head start on finding a replacement product.  Instead. I'm completely out of product, I've paid for five months of useless and defective product, and have nothing suitable as a replacement.  I called Cymed and they had no solution.  They would not take the several boxes of pouches back that were all defective.  They clearly do not stand behind their product.

Over the past month or so, I've tried every possible solution and combination with Coloplast, Convatec, and Hollister.  Hollister didn't have anything flexible enough for my body shape.  Coloplast has their Sensura Mio line which seemed like it would have some potential with the advertised flexibility, but the barrier consistently failed after less than 24 hours.  Convatec's barriers were too rigid for me.  (I have defined abdominal muscles and very little body fat, so their barrier eventually just comes off after a lot of movement.)  I even tried mixing and matching brands out of desperation.  I tested Convatec's and Coloplast's adhesive pouches, matched with the Cymed Microskin barrier.  Both Convatec and Coloplast had the same problem--The adhesive ring on the pouch is made of some sort of foam, so when it bends, it eventually detaches.  I can go about 6-12 hours before the adhesive rings on these pouches start detaching from the barrier and leaking.  

I've used Cymed products for 5 years without ever having a leak, and I live a pretty active lifestyle (at least I did before Cymed changed their pouches).  Now I experience leaks and product failures literally every day, and I still have yet to find another product that will work.  And to add insult to injury, my health insurance provider will only cover 20 pouches per month, and I'm currently going through three times that amount.


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VeganOstomy
(@veganostomy)
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August 8, 2018 1:46 pm  

Welcome to the forums, CoachDavid. 

I'm glad you've at least found a bunch of us who've been experiencing the same problems with Cymed products. It's unrealistic for everyone to just sit and wait for a solution, and I'm glad you've been looking at alternatives. 

I hope that you're able to find more ideas here, but since you have insurance limits and do not want to go over those limits, I would recommend working with a stoma nurse to see if they can help you find a replacement (and may even provide some samples to get you started without digging into your insurance quota). 

Best of luck to you. Please, continue to update us if you find an alternative product. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Marcie
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August 8, 2018 1:58 pm  

HI C. DavidIF your on medicare, and go to the stoma nurse--they do charge u for the pouches that thy give you.  Make sure that they do not write this in for the visit..  Also, a hospital can help out?? na-- thenurse is your best bet--

Find a support group near you-- we help each other all the time. 

If one has a fire? we have a pouch drive and a clothes drive too !! 

Have you worn the belt that comes with these other pouches  they do help to hold things in place..     Good luck !!!!!!!!!  Your n a sad situation...…..  Hope your get brighter days!!! 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Momof3boys
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August 8, 2018 2:12 pm  

Coach David,

  • Keep pushing Cymed on returning your boxes, Nina Vollmer asked me to save all of my defective boxes to return to her. If you read back a few posts from me I have the CEO of Cymeds direct phone line. I cleaned out my product closet and came upon 2 boxes of my old pouches it felt like Christmas morning except better! I will only be using those bags when I know I have no option for a leak or ability to change (which in reality is daily, but you get it). Everything you said regarding a social responsibility is so true. They are literally shredding their customers physically and emotionally by sending us such a seriously subpar product. I’ve thought about finding out who their original supplier was for bags and ordering directly from them. The CEO had told me that because they were such a small company the outsourced manufacturer of the bags couldn’t continue to provide them bags and still make money, or something along those lines. Which leads me to believe the original bags are being sold by another company, but finding them may be tough. I’m going to give them a call again this week. The CEO told me they were hoping to have the original product back sooner rather than later and that was a few months ago. One serious concern I have is that the CEO didn’t even know that the adhesive on the pouch had also been changed? He also struggles with understanding what I’m talking about when I describe the problems. It’s like he doesn’t even know his own products? 
  • I’m rambling now, Coach just please keep emailing and/or calling Cymed, we HAVE to get our products back. I cannot deal with ordering and trying products that I just Don’t like. 

Thanks! 


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Tom Duerr
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August 9, 2018 7:19 am  

Cymed's wafer and adhesive prior to 7/2016 were made by Salts in the UK. They have the same wafer material and adhesive in their convex product. I do not like the convexness(is that a word?) but love the fact that it lasts 4 days.


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CoachDavid
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August 10, 2018 5:25 pm  

Momof3boys, I can totally relate to your excitement when you found the additional stash of old pouches.  I'm going on a week-long business trip next week and I pulled out my last 3 old pouches from my emergency kits to use specifically for this upcoming trip, and I'm so looking forward to a week where I don't need to worry about leaks and other issues.

As I mix and match and experiment with other products, I think I have finally made some headway.  The Cymed barrier is the only barrier that I've been able to get to stay on for at least two days.  All other barriers that I've tried (Coloplast, Hollister, and Convatec) come off after a few hours of movement (or sometimes when I'm sleeping and not moving at all).  The main barrier issue is that when I move (like sit down, stand up, bend over, etc.) most barriers start to fold because they're not flexible enough, which pulls that section off the skin, then it leaks.

So a couple nights ago, I decided to start with the Cymed barrier, and I attached a Coloplast Sensura Mio adhesive pouch to it.  When I tested this several times over the last month, the pouch would start to detach from the barrier after a few hours and leak.  However, this time I also added a Trio Silex Silicone Flange Extender that I received as a sample around the outside, figuring that it may buy me a couple more hours by seeing the leak start to form before stuff gets out.  However, to my surprise, it appears to have contributed to holding things things in their original shape well enough that I actually got two days of wear time with no leaks.  I don't really like the Coloplast Sensura Mio pouches, but I suspect that I'll be able to get the same result with the Convatec pouch with the adhesive coupling, since their adhesive coupling is almost identical to Coloplast's.


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Momof3boys
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August 10, 2018 5:44 pm  

Wow, David. maybe this is the solution I’ve been looking for. I’ve tried about 5 different flanges and bags from different companies and haven’t had anything work like the old bags. I’ll give this a go. I just don’t want to smell this anymore! You’ll find with the older bags you have just found you will be again defeated realizing how bad the new bags are. 

Thanks for the idea though, its worth giving it a try for me. 

 


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dogtalkerer
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August 15, 2018 1:51 pm  

Coach,

did you try the sensura? Not the sensura Mio.  I've had poor luck with Mio.  I put on a sensura 1 piece friday night, did a 28mile mnt bike race saturday, kayaked 4hrs sunday, mnt biked 10miles monday and its still on wednesday.  I do have a colostomy though.  I myself can't imagine wearing a 2 piece, just not flexible enough for my life style, and a great leak risk.

you could trim down a pre-cut 1 piece flange,  add an opsite tape boarder and basically have a cymed microskin bag.


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dogtalkerer
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August 17, 2018 1:52 pm  

Update:

the sensura bag held up for a 18 mile kayak trip before retiring. not bad......


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CoachDavid
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August 18, 2018 9:02 pm  

I requested a sample of the Sensura extended wear from Coloplast and just received it.  Coloplast had previously sent me only standard wear samples (which didn't stay on), so I'll find out how the extended wear Sensura products work soon.


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VeganOstomy
(@veganostomy)
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August 19, 2018 9:43 am  
Posted by: CoachDavid

I requested a sample of the Sensura extended wear from Coloplast and just received it.  Coloplast had previously sent me only standard wear samples (which didn't stay on), so I'll find out how the extended wear Sensura products work soon.

I hope you have success with those. To be honest, I don't have any luck with any standard wear appliance - the edges peel quickly and the wafer erodes in no time. Extended wear should make a big difference for you, but your skin will need at least two weeks to fully appreciate the new adhesive 👌

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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dogtalkerer
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August 20, 2018 12:34 pm  

Coach, you are following the installation guide lines and heating flange with hair dyer first?

i wear a tight weight lifting belt for 15 minutes or so to seat the flange well to the skin, makes a big difference in wear time.   in winter I use the wood stove to heat flange.


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john68
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August 20, 2018 12:43 pm  

like that idea on wearing the belt afterwards for a while, some pressure and heat makes all the difference to any wafer!

ileostomy 31st August 1994 for Crohns


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Bethany
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August 21, 2018 10:03 am  

Just signed up to gather information about Cymed users. I am a Cymed user whose life is turned upside down by their product changes, and have met with extremely negative responses from Nina in QC in the beginning.  I felt gas-lighted for having issues.  Things are more calm in communication - though she does not respond.  We simply send replacement boxes back and forth.


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