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VeganOstomy
(@veganostomy)
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August 21, 2018 10:55 am  

Welcome to the forums, Bethany. 

Thank you for sharing your experience through all of this. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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CoachDavid
(@dlmonroe)
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August 22, 2018 2:05 pm  

Bethany, I get your frustration in dealing with Cymed.  I have about 10 boxes of the defective Cymed pouches, and the problem is that even if they would exchange them, there's nothing to exchange them with other than more defective pouches.  I'm hoping that by the time they come up with a new pouch that works, that they'll do an exchange at that point, even if it's a year from now.


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CoachDavid
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August 22, 2018 3:09 pm  

Dogtalkerer, I must say that I'm a bit jealous that you were able to get good wear time with such a high amount of activity.  :-)

I did my first test of the Coloplast Sensura Flex Xpro 2-piece earlier this week, and I didn't have such good luck.  I got about 18 hours of wear time before effluent started seeping under the barrier and irritating my skin.  That's better than the Sensura Mio standard wear, though, which only lasted about 6 hours.

I've attempted most of the tricks to ensure proper adherence, including warming the barrier/wafer a bit with a hair dryer, using warm water and a wash cloth (no soap) to clean the skin, etc.

I did have some success with another, though.  I had Salts in the U.K. send me some samples, and I got two days of wear time with the first one I tried (the Harmony Duo with the hydrocolloid tape around the edges).  I didn't like the hydrocolloid tape because it always felt slimy even hours after taking a shower.  I'll try the one without the tape next.  Two days is my current benchmark since that is on par with the Cymed products that I had been using previously, and I might have even been able to a third day with the Salts product.  I'm in the U.S., and the nearest Salts distributor is in Canada, which I may need to figure out how to work with if I choose to continue using their products.  They said they're working on securing a distributor in the U.S.


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dogtalkerer
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August 23, 2018 4:14 pm  

Yeah, you Ileo's have a harder time.  has anyone tried putting antacid tablets in the bag to reduce acid erosion?  maybe vegan has tried this??   

try a higher heat setting on the hair dryer, I've put bags on almost hot, they do stick  well when I'm riding in real hot weather.

last bag only lasted 3 days......kind of hit and miss, maybe I didn't clean skin well enough.

Bethany, what product do you use,  and why were you returning them?  has nina sent you stuff that works?

has anyone really needed the 5 times folding of tail on cymeds? I find 3 x plenty.


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Momof3boys
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August 23, 2018 4:20 pm  

Ok Vegan Ostomy friends. I just Had multiple emails back and forth with Nina Vollmer QC manager for Cymed. She has been trying to get things changed back and it’s falling on deaf ears. She has asked that we flood the Cymed owner with snail mail. Emails are being diverted and won’t go up to the owners. We need to send old fashioned mail to the owners. I have the name and the address to send these letters. PLEASE let’s try this. She said that some things are starting to change but definitely not completely in the direction we as customers are begging for. I’ll attach the screen shot with the email and the name of the owner. Please leave a quick comment that you are willing to send a letter to the owners of this company and hold them responsible for the changes they have made and the difficult situations they have put us in. 

Thanks Nicole 

Nick Gritzai is the owner.

 

Nina Vollmer, PhD

Product Development Engineer / QC Manager

CYMED

1123 North Market Blvd, Ste 5

Sacramento, CA 95834

P: 800-582-0707 x709

F: 800-582-0707

1535055646-CA8C1157-BDDB-4300-A27F-5CDBDC08F410.png

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Momof3boys
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August 23, 2018 4:31 pm  

Ok. So the name to send to is

 

Nick Gritzai

1123 N Market Blvd, Ste 5

Sacramento CA. 95834

 


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Dona
 Dona
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August 23, 2018 5:48 pm  

I have been following this discussion of the CYMED breakdown. I don't use this brand but am horrified by the failure of this brand and their representatives to fix it.

 

The writing by snail mail campaign sounds like a good plan.

also, I just wondered if you had tried get a refund ( or credit with Medicare) from that company. It is a failed product and they owe you ( they can never repay your emotional grief).

Also.. If everyone ( all of us) mentioned this to any stoma nurses or ostomy suppliers this would be good. Warn new ostomates off this brand.

Complain to whatever Federal agency approves these for public consumption. ( I don't know who that might be)

 

I looked at the Salts web site. They do have an email link in the UK posted there.

anyway..I wish everyone  better luck with resolving this.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Marcie
(@shulmjs)
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August 23, 2018 6:02 pm  

I agree with Dona here!!  I will say something-- We all should !! IF anyone goes to an ostomy nurse and she try's to give u their products-say no and tell them why--  they come here and I cat a sample- I will call them and tell them what I think-- Not good !!  What were you people thinking?? The company depends on new patients to get a good word out--and they go to support groups..  I will attend a meeting if they come here to Ct. And I will tell them of this..  I feel so sorry for you all that loved this product and now left having to go find and seek games.  Not professional...……  May be they are going under….. ????? 

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


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dogtalkerer
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August 27, 2018 12:31 pm  

coach, 6 hrs is sad for sure......... I wonder if its acid related(erosion) or if the flange is just too rigid? for me that was the ticket with microskin, thin and flexible.

what is your experience with 1 piece?


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CoachDavid
(@dlmonroe)
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August 27, 2018 9:49 pm  

Dogtalkerer, my wear time challenges are related mainly to acid related erosion from liquid output, and to a smaller extent, lack of flexibility of the flange.  When I move around a lot, that can start to bend the flange and cause it to pull up from the skin, creating an easy path for effluent to get underneath and out.  This is also why I have not had much success using barrier rings, as they tend to eventually separate after a lot of movement and allow effluent to get through. 

The microskin has worked well for me because it has incredible flexibility, so no matter how much I move around, it just flexes with my skin.  However, even with that flexibility, I only get about two days of wear time before effluent starts to work its way underneath.

I'm also testing some 1-piece products, although I have yet to have any success with a 1-piece.  Since using paste or barrier rings reduce my wear time from days to hours, placing a 1-piece pouch without using paste or a barrier ring is more difficult to precisely align on a 1-piece (which is necessary to prevent skin exposure).  I suspect that my best chance of success with a 1-piece may be the Salts Natural Advance 1-piece, since it is very flexible.

 


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john68
(@john68)
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August 28, 2018 2:35 am  

Hi Coach, This is just a suggestion, if acid erosion is eating the rings and the wafer have you tried the trio siltac barrier ring. I have to point out I have not tried this product!! but am going on the fact its silicone and looks to be very flexible! may be some who has experience of them can add some feed back.

ileostomy 31st August 1994 for Crohns


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LK
 LK
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August 28, 2018 2:41 am  

John...why are you up? This cymed thing is crazy, I feel for all involved in it. Hope things turn out real well for everyone.

Linda


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john68
(@john68)
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August 28, 2018 2:52 am  

Have been up for 2 hours, its 8am in over here lol

ileostomy 31st August 1994 for Crohns


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LK
 LK
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August 28, 2018 3:19 am  

2;52 must be Erics time. I think I can sleep now. Have great day John68!

Linda


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Mermaidspla2
(@mermaidspla2)
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August 28, 2018 1:15 pm  

You are lucky you are getting replacements.  Most could only get one.   The Cymed product my husband uses is for Urostomy and the Cymed Microskin changed his life for the better.  He has had his Ileostomy  57 years ago due to Charcot-Marie-Tooth disease.   What a disaster when the Cymed new owner took over.  Now the valves leaked got bigger and jabbed him. The sides seeped after approx 24 hours and never at convenient times.  Nina did exchange one box.  But basically claims she is helpless.  Hubby has almost used up his old boxes that we had.  I just spoke to Coloplast and they are sending him free samples of their Sensura Mio.  The representative I spoke to was extremely nice, caring & thorough in explaining the product. She answered my questions and is even sending an extra 1/2 moon sealing piece just in case we find the seal leaks at all.  His body shape does not work with the thick rubbery seals at all.  I so hope the product works out for him because this is a life changer as you all know and the representative was so nice I would like to support their business.  Will update after we try the product.  She is sending multiple pouches so he has a good sampling just in case he puts one on wrong or something.  Kudos to the service department!  


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Momof3boys
(@momof3boys)
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August 28, 2018 1:34 pm  

Hey all,

PLEASE, PLEASEc PLEASE let’s take the time to send a letter! If everyone could send even something it will get to the owner and some things can change. I’m sending an older model bag, unused, and a new one so that possibly they can see the difference. You’d think they know but honestly I’m not sure! I’m also probably going to make an appointment and fly out to Cymed so that they can see a face and understand what they are doing to their customers. I lived in Sacramento for about 10 yrs, so the flight isn’t uncommon for me. I’m not sure what goes through people’s mind that don’t possibly know an ostomate. Possibly that we are older and bedridden . Obviously as a company they SHOULD KNOW their customer base. But, I’m at the end of my rope. I will be professional, but ideally if I can go with some letters that have already landed on the CEOs desk, that would make my case that much stronger. 

Please help! @veganostomy if you could get the word out to anyone it would be greatly appreciated. 

Thanks! 


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VeganOstomy
(@veganostomy)
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August 28, 2018 2:54 pm  
Posted by: Momof3boys

Please help! @veganostomy if you could get the word out to anyone it would be greatly appreciated. 

I try to promote this thread to see if anyone else can share their experiences, but I do encourage those who are experiencing these problems to reach out to Cymed directly. They need to know how big of a problem this is. 

The only real advocacy charity in the US is the UOAA. I'm not sure if they would have any pull or suggestions, but it may be worth contacting them to see what they can offer. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Tom Duerr
(@tduerr7)
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August 28, 2018 3:36 pm  
Posted by: CoachDavid

Dogtalkerer, I must say that I'm a bit jealous that you were able to get good wear time with such a high amount of activity.  :-)

I did my first test of the Coloplast Sensura Flex Xpro 2-piece earlier this week, and I didn't have such good luck.  I got about 18 hours of wear time before effluent started seeping under the barrier and irritating my skin.  That's better than the Sensura Mio standard wear, though, which only lasted about 6 hours.

I've attempted most of the tricks to ensure proper adherence, including warming the barrier/wafer a bit with a hair dryer, using warm water and a wash cloth (no soap) to clean the skin, etc.

I did have some success with another, though.  I had Salts in the U.K. send me some samples, and I got two days of wear time with the first one I tried (the Harmony Duo with the hydrocolloid tape around the edges).  I didn't like the hydrocolloid tape because it always felt slimy even hours after taking a shower.  I'll try the one without the tape next.  Two days is my current benchmark since that is on par with the Cymed products that I had been using previously, and I might have even been able to a third day with the Salts product.  I'm in the U.S., and the nearest Salts distributor is in Canada, which I may need to figure out how to work with if I choose to continue using their products.  They said they're working on securing a distributor in the U.S.

Try salts convex product. I am now getting 3 to 5 days.

 


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CoachDavid
(@dlmonroe)
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August 30, 2018 1:10 am  

John, I had received two Trio Siltac barrier rings a couple weeks ago, and I had high hopes.  They apparently do not break down, and they're very flexible.  I tried one, and effluent got underneath very quickly (within a few hours).  I have one more left that I haven't tried, and I'm waiting to see if there's a trick to make it adhere to my body better before trying that last one.  It seems like there could be some potential with that barrier ring if I could get it to stick better.  The Trio flange extenders stick very well, so I would expect that from the barrier ring.


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jazz99
(@jazz99)
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September 9, 2018 3:17 pm  

@Momof3boys thank you for your persistence. I live in Oakland... have never gone up to Sac, but might be interested in joining you for a meeting with Cymed. For me, as well, it is a huge quality of life issue. My skin won't tolerate most adhesives or tape, and Microskin not only stays stuck to me regardless of activity, but is the only thing my skin can tolerate.  I have been suffering through the terrible bags, just to keep the microskin. Have received about four different versions of the 78400V now, and there was one most recent one that the quality of the plastic bag itself was a bit better (slightly thicker, less noisy, a little less odor) and the tail "rolls" a bit wider, but now just re-ordered from Edgepark and got sent the very first version of the inferior bags. So their inventory is all mixed together. Makes me just want to cry!

@CoachDavid (i think it was?) asked where the various products were actually made. Some -- as mentioned -- by Salts in UK, but the pouches that i use are made by ForLife in Germany, on their Stomocur line. And they are still available everywhere but the US. I couldn't get a response to messages i sent through their website, but @veganostomy gave me the name of a distributor in Canada. They can get them and ship to US, but my per pouch cost would go from about 70-cents to $10 US, since my insurance won't pay for it (i tried to appeal that as well!).

Perhaps another point of advocacy might be challenging whatever the barriers are to US distribution of European ostomy products (ie, Salts and ForLife). Edgepark used to carry some of ForLife's products but discontinued when Cardinal Health took over.

Does anybody know of a US medical supply company (covered by insurance) that carries ForLife / Stomocur or Salts bags?

@Momof3boys, you had posted before the name and number for CEO of Cymed (Nicholas), is that the same person as "Nick" who you want to send snail mail letters to? You had said before that Nicholas was responsive... Makes me concerned that Nina's suggestion of snail mail is just a way to diffuse things, since many fewer folks will likely do that...

I don't want to see Cymed go out of business if they are our only way to get those European products, and specifically to get microskin pouches, but it's hard to imagine they can maintain a customer base if they keep on like they are.

Thanks for listening, y'all. It's not something non-ostomates can really understand!


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