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frustrated trying to settle on an appliance
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Picture of boogiemomz
Posted
I have a loop with a nice bud on the upper hole, but the lower part is very sunken in. I really want coloplast to work. I've been struggling with the 2 piece system, don't know if I've been cutting the hole wrong, but my skin ALWAYS breaks down within 2-3 days after switching to coloplast. I've had better luck with my skin using the convatec moldable convexity, and it's so much easier to apply because the hole rebounds so nicely against the stoma. But there are a bunch of things I like so much better about coloplast--better adhesive wafer (the outer edges of the convatec tape wafer always lift up and come loose near my belly button, meaning I have to change at least every 2-3 days because the wafer is coming off from the outside, though the seal around my stoma is fine, and yes, I've tried packing it with pinches of a barrier ring/putty), I find the coloplast outlet much easier to clean, and I like how the coloplast opaque pouch is covered with fabric. But it just seems that I cannot use the coloplast system without severe immediate skin breakdown. Today was my 3rd day trying to use coloplast again, I started with intact skin, I changed this morning after 2 days and my skin was red and raw, used powder and spray this morning, and when I changed again just now due to that acid burning feeling, it was bleeding. So, back to convatec.

I always use rings with the coloplast wafer, but I find I don't need them with convatec. I was hoping to just keep trying with the coloplast until I figured out a trick to make it work, but this happens every single time--coloplast=raw, broken, bleeding, weeping skin, convatec=totally intact skin. But these convatec wafers bug me to death. Do I just need to get over it? Anyone else ever face a dilemma like this choosing a product? I'm so frustrated. I have a stoma nurse I can call, and I probably will do that next week, though I have a lot of experience with these things--she told me that I could probably do her job. I know what I'm doing, but I do wonder if any of you have had similar experiences and found some miracle product that made the difference between an appliance working and not working. Any help would be appreciated. Thanks!


UC dx'd August 2001
2004-2009 nice, long remission, no meds
sweet baby girl born 11/09
flare, meds failed
total colectomy/end ileo 2/24/10
S-pouch created, loop ileo 1/5/11
Takedown 3/22/11
Efferent limb syndrome dx'd at Cleveland Clinic 8/2011
Temp ileo scheduled for 10/11/11
Pouch revision... Later!!

What the caterpillar calls the end of the world, the Master calls a butterfly. --Richard Bach
 
Posts: 316 | Location: Durham, North Carolina | Registered: March 27, 2010Report This Post
Picture of WinniethePooh
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This is really the worst part of adjustment. Getting a system that works.

What barrier ring are you using? I found eakin seals work good when the skin is broke down and healing. Otherwise I use coloplast strip paste. It a works great with coloplast wafers. seems to become a part of the wafer and it fills in the gaps.


J-Pouch Step One 10-22-08 - Not Possible - Result Perm End Ileostomy
Stoma Revision 3-4-09 - Major success!!
 
Posts: 146 | Location: Wisconsin | Registered: September 06, 2008Report This Post
Picture of boogiemomz
Posted Hide Post
I've tried all the barrier rings. With Eakins, I have a hard time getting it to stick to my skin, it isn't very tacky. The Hollister adapt rings have more tack to them, and I seem to have had the best luck with those. I recently tried a sample of the new coloplast rings (started a discussion about them not long ago), and they're nice and tacky, and they're stretchier/more moldable than the adapt rings. I thought this would be a good thing, except that I have had trouble getting them to maintain their shape as I'm trying to mold it around the stoma... I keep having to reshape it over and over.


UC dx'd August 2001
2004-2009 nice, long remission, no meds
sweet baby girl born 11/09
flare, meds failed
total colectomy/end ileo 2/24/10
S-pouch created, loop ileo 1/5/11
Takedown 3/22/11
Efferent limb syndrome dx'd at Cleveland Clinic 8/2011
Temp ileo scheduled for 10/11/11
Pouch revision... Later!!

What the caterpillar calls the end of the world, the Master calls a butterfly. --Richard Bach
 
Posts: 316 | Location: Durham, North Carolina | Registered: March 27, 2010Report This Post
Picture of WinniethePooh
Posted Hide Post
I found when I have the weepy irritated skin it takes a few times of "crusting" and frequent changes until it heals before my wear time gets longer.

I'm sorry to hear things are not quite right yet. I have always had and end ileo with Ive been told is much easier to deal with. I totally understand the frustration and have been there a few times. The only thing we can do is keep on trying. I pray you find the ideal system.


J-Pouch Step One 10-22-08 - Not Possible - Result Perm End Ileostomy
Stoma Revision 3-4-09 - Major success!!
 
Posts: 146 | Location: Wisconsin | Registered: September 06, 2008Report This Post
Picture of WinniethePooh
Posted Hide Post
I just remembered a lady named Shell would mix and match Convatec wafers and Coloplast bags. I searched and found and old post from her.

"I mix"n"match. I wear Convatec's moldable convex wafers with the adhesive coupling and team it up with Coloplast's Easyfex bags which also have adhesive coupling. So easy to change a bag when all you have to do is unstick one and replace it with another. Plus, as it doesn't have a hard tupperwear type ring it's really low profile. Almost as low profile as a one piece. I haven't had a leak with this system in 5 years"

She is from the UK so I think the Coloplast bags are called something different in the US.


J-Pouch Step One 10-22-08 - Not Possible - Result Perm End Ileostomy
Stoma Revision 3-4-09 - Major success!!
 
Posts: 146 | Location: Wisconsin | Registered: September 06, 2008Report This Post
Picture of KissMyOstomy
Posted Hide Post
Has anyone tried the hollisterforma flex barriers, similar to the convatec moldable wafers. I asked the WOC nurse about it thinking it would have many wonderful advantages; no paste or rings, no cutting, and it molds around your stoma and moves with it. My WOC nurse had really nothing but good things to say and no complaints. I've requested started kits for essentially the same 2 piece system from the 3 major manufacturers.

I've only been out of the hospital 2 days, ready for another wafer change today. God I hate the see through bags. Its enough having to deal with all the pain from both sides but having to see my poo too Frowner


http://www.spillingmyguts.net

http://online.ccfa.org/site/TR...=personal&fr_id=3179

http://www.facebook.com/pages/...248335972119?sk=wall

Diagnosed with UC - 10/2003
J-pouch created - 06/23/09
Takedown - 09/15/2009
Diagnosed with chronic pouchitis - 8/2011
Perm ileostomy - 12/13/2011
 
Posts: 370 | Location: Charlotte, NC | Registered: April 19, 2009Report This Post
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I change my bag every three days. This is the only way to keep my skin from getting irritated. Especially with a loop I would be surprised if you got more than three days wear out of any system, ESP if you are still pretty liquid in consistency. You should not, however have severe skin break down by three days, definitely check with your ostomy nurse.
 
Posts: 3017 | Location: West Roxbury, MA 02132 | Registered: April 14, 2000Report This Post
Picture of boogiemomz
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Thanks everyone for the replies. Interesting suggestion to pair the coloplast pouches with convatec wafers that have the adhesive coupling. I had trouble with the adhesive coupling when I tried it with my last stoma, stool would always migrate down the foam a little bit and I could see it between the adhesive layers. I talked with a nurse at Convatec yesterday and she said this was normal, and didn't mean it was going to leak. So she's sending samples of those too.

I think 3 days wear time is all I'll ever get and I'm okay with that. I'm usually ready to change it by then anyway and get a fresh start. I may still experiment with the Coloplast, because I would still prefer that if I can work it out, but I know my skin stays healthy with the moldable convexity, so I have a reasonably good option I guess. Thanks for the advice!


UC dx'd August 2001
2004-2009 nice, long remission, no meds
sweet baby girl born 11/09
flare, meds failed
total colectomy/end ileo 2/24/10
S-pouch created, loop ileo 1/5/11
Takedown 3/22/11
Efferent limb syndrome dx'd at Cleveland Clinic 8/2011
Temp ileo scheduled for 10/11/11
Pouch revision... Later!!

What the caterpillar calls the end of the world, the Master calls a butterfly. --Richard Bach
 
Posts: 316 | Location: Durham, North Carolina | Registered: March 27, 2010Report This Post
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I use coloplast, cut the ring tight against the stoma, I use the paste and it really fills in the dips, also convex wafer. I had problems with my loop ileostomy, my permanent works better. I also use a skin barrier and that helps too. I get yeast growing under my wafer but antifungal cream prevents that.
 
Posts: 356 | Location: Black Hawk, CO | Registered: October 11, 2007Report This Post
Picture of boogiemomz
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How can you use antifungal cream under the wafer? Doesn't it mess up the adhesive?


UC dx'd August 2001
2004-2009 nice, long remission, no meds
sweet baby girl born 11/09
flare, meds failed
total colectomy/end ileo 2/24/10
S-pouch created, loop ileo 1/5/11
Takedown 3/22/11
Efferent limb syndrome dx'd at Cleveland Clinic 8/2011
Temp ileo scheduled for 10/11/11
Pouch revision... Later!!

What the caterpillar calls the end of the world, the Master calls a butterfly. --Richard Bach
 
Posts: 316 | Location: Durham, North Carolina | Registered: March 27, 2010Report This Post
Posted Hide Post
Are you aware that there are several different kinds of coloplast wafers. And for me with the current loop ileo I have.. only one certain one worked. And I was like you.. wanted coloplast for lots of the same reasons.
So with coloplast there are sensura, assura.. and all have convex options..But there is also an assura extended wear. That is the only coloplast one that currently works for me. I also was more successful jamming the entire eakin seal right onto the wafer and pushing it and melding it into the wafer. Then putting that whole contraption on my skin.
Hang in there. I think you have a diverted loop ileo for a failed jpouch and that is what I currently have. It has been the most difficult ileo to manage yet. AFter 2 months of testing stuff and seeing every single cleveland clinic ostomy nurse... I settled on the fact that I MUST change mine every 2 days .. no matter what.
Also remember to measure your stoma again as you are recently out of surgery and sizing can change for a few months.
good luck
 
Posts: 280 | Location: Pittsburgh, PA | Registered: December 17, 2008Report This Post
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