Sensitive Skin + Convexity = I am at the end of my rope!!! :(

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80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 12/7/2010 7:02 AM (GMT -6)   
Hi everyone,
I have had my ostomy for just 9 months and have been through the gamut this year. I am so glad to have my ostomy (otherwise I'd be dead) but I am SO FRUSTRATED because my new health is tainted by my inability to find an ostomy product that works. Everyone says to be patient, but I honestly feel like there is nothing out there for me.
 
I started with Hollister 2 piece. Then I developed a skin allergy to the wafer. I switched to the no-tape 2 piece Hollister. It worked for a while.
 
Then I started experiencing leaks. I needed convexity. I then used the Hollister no-tape 2 piece CONVEX. It was fine.
 
Then I got a yeast infection under my wafer. It persists despite Nystatin powder, oral diflucan, and just about anything else I've tried. It's been about 2 months. I'm so frustrated. My WOCN says I should try a different wafer to "give my skin new life" but there are not many my sensitive skin + convexity needs will work with.
 
Convatec adhesive sends my skin into huge hives after just a day, Coloplast sensura was GREAT on my skin, but leaked after less than a day because I used a flat wafer, not a convex one. My WOCN says there is no sensitive skin convex wafer from Coloplast.
 
I don't know what else to do. I've ordered some samples from cymed, but I don't think they have convexity, and after reading everyone else's comments on the cymed post, I'm not sure what to wear with it if I can't use a barrier ring.
 
I'm so frustrated and scared I'll never find anything to work with my skin and convexity needs. It's so frustrating listening to everyone who can get 7 days wear time and have no problems. My stupid sensitive skin is making my life hell.
 
Does anyone have a light at the end of my tunnel? I feel I've exhausted all my options.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 12/7/2010 7:53 AM (GMT -6)   
Yikes, that's not fun shakehead

I'd suggest a new WOC Nurse...only because no two have the same experience. I know they share their knowledge but sometimes things slip by!

Call Coloplast directly, too, and see what they suggest regarding sensitive skin. I use the Assura Extended Wear (no tape/paper around the outer edges) and haven't had any irritation. I don't know if it would work but even though I don't have an allergy I would get sensitivity from the Convatec.

I think Cymed does have one that has a ring of sorts which allows a seal like Eakin to be used with it. I need convexity, too, and I'm ordering a sample to try because you just never know!

Last thought, what about using the Coloplast wafer that worked and put a convexity ring adapter in it to get the convexity? Not sure if those are specific to manufacturer but it might work!

best wishes
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

WeirdBeard
Regular Member


Date Joined Aug 2008
Total Posts : 123
   Posted 12/7/2010 9:50 AM (GMT -6)   
I have skin problems and use the Coloplast Sensura Flex with convex wafer. It is what the Coloplast rep recommended for sensitive skin. (Your WOC nurse was incorrect.) It works great for me.

The only other brand that worked on my skin was a Marlen one-piece UltraMax which was also convex.

To get samples from Coloplast call 1-888-726-7872.

For Marlen: 216-292-7060 or go to their website at www.marlenmfg.com/index.html and click "Request a Sample" at the top right of the page.

My other suggestion is to use the Smith & Nephew tincture of benzoin spray. It stings like fire but will clear up and protect your skin. It also makes the wafer stick better, but you must let it dry first (use a hair drier on low).

That is what has finally worked for me. I hope it works for you too.

You will be in my thoughts and prayers.
51 - male - in North Carolina near Asheville
UC is GONE!! Permanent ilieostomy on July 8th, 2010.
Stoma is named "Sparky".

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 12/7/2010 7:35 PM (GMT -6)   
Have you considered going to see a dermatologist? I read where somebody else had luck seeing a dermatologist. Good Luck, Tracy
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy. Parastomal hernia discovered in November, so more surgery, probably end ileostomy with relocation of stoma.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 12/7/2010 8:11 PM (GMT -6)   
I was so scared to read the replies because I was afraid I'd hit more brick walls!!

But honestly, THANK YOU all for your thoughtful replies.

Ohio, I have tried the convex barrier rings with other flat wafers, and I'm not sure why, but they don't work at all--I still leak. Is the Coloplast Assura convex? AND no tape? (fingers crossed!) Keep us posted on the cymed with convexity!

WeirdBeard, thank you so much for your info. I will give all of those things a try.

Tracy, I see a derm for other things but never considered asking about this. I feel like people who don't know about ostomies would freak out seeing one! I will check with my derm to see their thoughts on treating me though. Good to have another option.

Again, thank you all.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 12/8/2010 10:14 AM (GMT -6)   
Just make sure when you go to the dermatologist that you do not eat and take a new bag with you so he can see the skin with the bag off.

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 457
   Posted 12/8/2010 12:38 PM (GMT -6)   
Stephanie- Ask your nurse about the Kenalog spray. It's expensive but I used it every time I change and I don't have irritation.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 12/8/2010 5:42 PM (GMT -6)   
Thank you for the suggestion, Brian.
 
I actually got that idea from you a few weeks ago and got my dr to prescribe it (after much discussion). They gave it to me with a MILLION warnings to USE IT SPARINGLY because it's steroids and you can get dependent on it and if it's covered up its effects are magnified, etc... Plus I used it twice and didn't see much improvement, if any :(
 
Does your dr seem worried about you using it so often?

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 12/8/2010 5:50 PM (GMT -6)   
yup you can get coloplast Assura AND Sensura in convex. I've tried both. No tape on either as coloplast doesn't have tape on any of their products. If the Coloplast Sensura flat worked for you, hopefully the convex will too. I know you have the skin problems, but i can't remember if you said you can use eakin or not. If you can, have you ever tried just eakin stretched around the stoma with Sensura flat? that's what I use now after trying 8 different systems because of leaks and skin issues. I needed convexity, but all the convex wafers popped off and would only stick about 1/2 right around my stoma. The plain old eakin and flat wafer acts just like convexity. It works great, 7 days every time. (i had problems with convex rings under flat wafers too)

As for the yeast infection not healing, i think seeing a dermatologist is a great idea! There may even be one in a local hospital that has experience with ostomy skin issues. Also maybe you should try DuoDerm. You can put your wafer on right over it and its specifically designed to help heal skin.

I'll keep you in my thoughts and prayers! Good luck!!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery TBD (hopefully in January!)

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 12/8/2010 6:24 PM (GMT -6)   
Betsaronie, thank you for your ideas.

I do use barrier rings. They are a lifesaver. I prefer Adapt rings to Eakin since they come off easier. I had been using 2" ones, and then accidentally ordered 4" once. I am using the 4" now as a preferred method because my skin does better with the ring than it does with the wafer, so I try to have as little of the wafer touching me as possible.

I did try the flat sensura with a 2" barrier ring, and that did nothing...still leaked. :( I hope the convex ones work better!

I have a coloplast sample on the way, so hopefully that will help. They will only send me one sample at a time. I am hopeful though.

I will definitely give my dermatologist a call.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 12/8/2010 7:25 PM (GMT -6)   
betsaronie
When I tried convex wafers in the past they came off just as you said in about two hours. ......only stuck 1/2 inch around my stoma. Right now I am wearing a convatec convex one piece and so far (15 hours) it is sticking really well.

Dan

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/9/2010 6:36 AM (GMT -6)   

Hi 80's,

Sorry I have no suggestions for you.  I use Convatec and Eakin Seals and Stomahesive powder and so far so good.  But I am just wondering are you able to do your teaching job that you were so excited about with all this going on?

Rosemary


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 12/9/2010 6:52 AM (GMT -6)   
Yes, Rosemary, thankfully I am. That is a major reason I'm so frustrated; my job is AMAZING and I am so scared to put it in jeopardy or not be able to do it.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/9/2010 9:08 AM (GMT -6)   

Hi Stephanie,

Glad you can work and I can see why you certainly don't want this to jeopardize your job.

I came up with an idea.  I order through Byrams's catalog.  They sell the supplies of multiple companies.  For each company they have a WOCN who will return phone calls.  They are good and tell you what you really need to know not just to market their products.  BUT they also know about every single product on the market.  So Google Byram Health Care and you should find their phone number.  I don't have my catalog with me or I'd post their number.

Also I forget if you said if you had consulted WOCN's at multiple hospitals.  each seems to know things the other don't.  I had no real trouble with any product.  BUT if one WOCN closer to my house had not told me about Eakin seals, I would have a permanent burn just below my stoma.  So go for consults to multiple Wound Care nurses (if you've not already).  Best of luck. Rosemary

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