Hello, I am new to this forum. I was diagnosed with colorectal cancer at the age of 37 and ended up with a permanent colostomy. I am a very active woman, and all of my interactions are with people of all ages. I am an attorney, a college instructor, and a minister's wife. I have been using cymed pouches for about 13 years and had never had any problems with my pouches or the barriers. I truly felt that when I found the cymed pouches and adhesive barriers I had found flawless products. All that changed about 4 months ago when I placed my usual order. I received pouches that looked and felt different. I began to experience very embarrassing and humiliating situations. My pouches were becoming undone at the corners; the filter was leaking; the filter wasn't working causing the pouches to balloon up. In one occasion, while I was in court in a nearby town, away from my county, my pouch became undone at the seams at the bottom corner. I was humiliated beyond expression. The very same day, our church had a youth event that evening, and I had to transport four young girls to the event. Upon returning from the event, another pouch became undone at exactly the same place as the one earlier that morning. Once again, I was humiliated beyond expression. The ride back to the church was the longest most humiliating ride of my life. Even with all windows open, the smell was awful. I got to the church and ran inside to address the problem and began to cry. I cymed several times and voiced my concerns and experiences. They assured me that the problems were being worked on. Upon my second order, I noticed changes to the leaky filters and noticed that the plastic was not as noisy. I was also thankful that the pouches were no longer coming undone at the corners. However, the filter continues to be a problem. It simply doesn't work. The pouches balloon up almost every time. This is extremely embarrassing for me when I teach or am standing before people. Suddenly, a huge bump appears on my dress, skirt or pants. It's simply unacceptable. Also, the adhesive part of the pouch does not stick as strongly as the original pouches. The adhesive part of the pouch can be peeled off very easily. The lack of strong adhesive material causes seeping of fluid. I often smell like a swamp because even if there is not output, there is little fluid that is released by the stoma. The fluid begins to bleed though the adhesive and releases a strange odor. When there is output, if I don't change the pouch IMMEDIATELY, there is some strange seepage. I can't figure out where the seepage is coming from. I seems to be coming from the center of the pouch's edges. The seepage bleeds into the meshy material of the pouch and seeps to the underwear. I am at my wits end, so I began to look for people facing problems like me. I don't know what products similar to my cymed pouches are out there. I don't understand how a company can mess up such a wonderful product. I don't know how we can demand that the product be better or at least the way it was before the horrible changes. The product was fine the way it was. I have called cymed, but apparently, my input does not matter. I am ready to begin my quest for a new provider, but I need help. I am reaching out to see if any of you recommend something for someone with a very active life style. My insurance only approves 12 boxes of the cymed closed end pouches that I use. Since the new pouches, as a result of the weird seepage that renders the adhesive useless and emits a swampy odor, I have to change pouches more often. I went through 15 boxes of pouches in 3 months. I have never had to use that many before. Please give me some direction if you can. Anyone, please. The humiliation has been very stressful, and I my self esteem has been bruised. Hi Evie, Welcome to the forums! Thank you for sharing your story and experience. We've actually started an entire thread about the changes to Cymed's products: https://www.veganostomy.ca/community/ostomy-products/cymed-ostomy-product-changes/ Many people have been going through the same problems, frustrations, and embarrassment - you are not alone! Cymed does have our attention, but there's no telling if they'll be returning to their previous (problem-free) products or not. That said, I'm sure we can all offer suggestions for other appliances. Have you tried any other brands at all since you've started having issues? Just your friendly neighborhood ostomate. Hi Evie, No way is the problem you and the others using this product is acceptable and should cymed choose to sort the defects it will not come shortly, so sorting another product is the best way at the moment to restore normality. Search the reviews on the site and order samples. Any ostomates confidence would be dented by what you all have been going through but a new system will help to restore ileostomy 31st August 1994 for Crohns Hi Evie, time to change full pouching systems. NOW!!! Have u tried the Mio?? I really love them.. Try sending those awful things back-- by things, they are not pouches to me.. just things. This is also one reason I order monthly - Good Luck!! I think we all know "that smell" right?? I feel so bad for you-- And as far as everyone goes with the order issues, it is shit we are talking about-- it stinks. And we have to deal with "it" more times than we did before.. M-9 is the only product that I find that helps a bit. IT is the blue...… We all want "it" to go away but we can't. We all want to stop many emptying's, but we try as much as we can even some reducing ourselves into not eating at all. (I did that also as many have, when in the early stages) doesn't work!! This is a new system that keeps on giving no matter what.. We are like a new born baby-- :-0 2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie.. Thank you. I am starting on the quest for a different system now. It is stressful. For the first time since I started using pouches about 14 years ago, my husband was bothered by the smell of the pouch. This had never happened before. He tried his best to be polite, but I felt horrible anyway. Thank yoiu. Marcie, what is Mio or M-9. I have never heard of this. Thank you for your input. ileostomy 31st August 1994 for Crohns Marcie, what is Mio or M-9. I have never heard of this. Thank you for your input. These are products I've reviewed if you need in-depth information about them :) Coloplast Sensura Mio one-piece #10471 Coloplast SenSura Mio 2pc Drainable Ostomy System Hollister M9 Ostomy Pouch Deodorant I personally use M9 right now because it eliminates pretty much all odor from the pouch when emptying or otherwise. But I suggest trying samples of different products to see what works. That said, no pouching system should ever smell from the outside, so that's what needs to be addressed by switching to something else. Just your friendly neighborhood ostomate. Hi Evie, WOW what a nightmare. Sounds like time for a change. My 2 cents. I have been very happy with the two piece Hollister system. I get them WITHOUT vents ( which never seem to work and eventually leak from the inside). I add EZ- Vents...read about them here on VeganOstomy. They are great for getting the gas out, which is a real problem for most of us. p.s. I always wear either a skirt or pants, so I have access to the vent...discreetly! Good luck! Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017. Hi Evie, As a user of the Coloplast Sensura Mio 2-piece click system, I can honestly say that it is a very secure system, though is has a little higher profile. I am currently trying out the Hollister Ceraplus, two-piece system and find, though I agree with Eric about the lesser quality of the material and the fact that I have to use a Velcro hack (Thanks, Eric!), I like the Tupperware type system of the flange on both the bag and barrier. It is much easier for me to use as opposed to the SM, plus, so far, the barrier has not separated from the stoma area like the SM does on me. Concerning the SM and HC, I have found that I didn't have much success using a filtered system, as I was not producing enough "gas" to make it work for me - I was constantly pancaking. That may not be your case, however. Good luck in finding a new system. God bless and take care. Stella
~ Crohn's Disease ¦ Ileostomy ~
~ Crohn's Disease ¦ Ileostomy ~
Community Forums
Notifications
Clear all
Introductions
11
Posts
6
Users
8
Reactions
3,356
Views
Topic starter
June 19, 2018 2:41 pm
June 19, 2018 10:13 pm
Evie reacted
June 20, 2018 12:56 am
Evie reacted
June 20, 2018 10:45 am
Evie reacted
Topic starter
June 20, 2018 5:58 pm
Topic starter
June 20, 2018 5:59 pm
Topic starter
June 20, 2018 6:01 pm
June 21, 2018 2:58 am
Evie reacted
June 21, 2018 9:58 am
Evie reacted
June 21, 2018 6:07 pm
Evie reacted
June 22, 2018 6:48 am
Evie and VeganOstomy reacted