Saw surgeon today - apparently I'm a freak!

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elddiReMsihT
Regular Member


Date Joined Nov 2010
Total Posts : 111
   Posted 3/17/2011 4:37 PM (GMT -6)   
My skin problems have become bad enough that we thought it worth the six hour drive back to the CC to see my surgeon and the team of stoma nurses.
The stoma nurses I saw were shocked by the state of my skin - I hate to think how bad things must be to shock stoma nurses! Since I am apparently so allergic to adhesives, they've got me doing something really odd now. I have a coloplast flange on, but we left the plastic backing on so that the adhesive isn't touching me. I am still using paste on it, because I don't seem to have problems with that. Then I have a belt on really tight... and that's it. A belt and a paste ring is all that's holding the pouch on me! Has anyone even heard of that? Ugh, I hate being so abnormal! After explaining my problems to the surgeon, he even said - his exact words - "you're a little weird"! I'll be going to a dermatologist next week, hopefully I'll get some help then... so sick of this! Take down couldn't come soon enough.
Diagnosed with UC in 2007
Flare in 2007 causing anemia requiring blood transfusions, eventually controlled by asacol and 6-MP.
Flared again in 2009 as 6-MP lost effectiveness, went on TPN and received more blood. Started Remicade, which induced remission.
Flared 2010; Remicade no longer effective.
Had 1st surgery of 3 step j-pouch at CC on 1/19/11. 2nd slated for April, and j-pouch in July!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 3/17/2011 5:19 PM (GMT -6)   
Yikes. I haven't been at this long enough to know how unusual your situation is, but it sounds hard. I hope everything holds! My surgeon also called me abnormal, but it was in a joking kind of way..... because I spiked a fever so quickly and so high, with an abscess, and for a few other reasons....

Oh well, a little weird isn't so bad, just would be nice to have it be for other reasons..... hang in.

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 3/17/2011 7:33 PM (GMT -6)   
whoa, that's nuts! I wonder, did any of them mention trying karaya wafers? it's hollister that sells them, but they are not a true adhesive more like a natural raw gum type deal. Someone once mentioned they were the original wafers before the adhesives were manufactured. and they continue to be used for people with severe skin reactions to wafers. They don't last as long since they are natural, (from what I hear 4 days is the max) but maybe you could look into those? I can't image how difficult it must be to have just the belt and some non sticky paste keeping everything on. Good luck to you!

here's a link www.hollister.com/anz/ostomy/products/karaya5.html

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/17/2011 7:56 PM (GMT -6)   
That's what I use; I have a pretty bad allergy as well.

If it makes you feel any better, I've been told that constantly because of my constant weird obstructions where my intestines twist at the stoma site. No one can figure out how to fix me! I understand your frustration well. I just want to live my life like the other ostomates and be happy!
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 3/17/2011 9:10 PM (GMT -6)   
elddi
Have you tried Friars Balsam Compound? When I changed to a convatec convex wafer the adhesive caused an itch. Friars Balsam on the entire wafer area stopped the itch.

Dan

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 3/18/2011 1:22 PM (GMT -6)   
 
   elddi,
 
  Hi, my daughter saw her surgeon today.  She is also having trouble with the tape.  Having an reaction.
Her surgeon isn't to worried about it , she is scheduled for her take down April 6. He said if she was keeping it then he would try and fix it but with it being so close he asked if she could tolerate it a little longer. So you aren't the only one.
 

ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 3/19/2011 4:37 PM (GMT -6)   
I don't know if this helps, but yes, I have heard of having to do what you are doing (essentially an adhesiveless wafer).  I started with the non-tape wafers because I am allergic to many adhesives and we anticipated I would be allergic to the tape in all wafers.  I ended up using the hollister new image 2 piece - the shorter wearing version.  I did have to use a convatec (a specific wafer) briefly because my skin got really bad.  the convatec was evidently the least irritating/most hypo-allergenic.  However, I hated the wafer because it was very stiff in comparison.  I ended up figuring out the best way for me to keep my skin healthier while still using the hollister no-tape shorter wearing wafer.  My WOCN's told me that if my skin didn't clear up I would have to do what you are doing.  However, I was told that I would have to put a piece of gauze between the plastic backing of the wafer and my skin so that my skin could breathe a little and heal.  Nu-Hope makes an adhesiveless system.  Check it out online and if you're interested and have to stick with the adhesiveless system you can probably call them and get a sample.
 
Did you use an adhesive remover when removing your wafers?  Did you do the allergy test (cut a piece and put it on the other side of your abdomen) to confirm that it was an allergy and not just your skin being really sensitive to the abuse that it is now taking from the wafer removal?  This was my problem so I had to learn to be really nice to it and do all the things that kept it (mostly) happy?
 
Found this post I did back when I still had my ileo:  Maybe some of the info will help you.  http://www.healingwell.com/community/default.aspx?f=33&m=1749764

Ducridr - 36 - female

Diagnosed w/ severe pancolitis 11/20/2007
J-Pouch surgery #1 of 3 on 8/21/2009!!!
Surgery #2 - 1/4/2010
Surgery #3 - 3/23/2010

Post Edited (ducridr) : 3/19/2011 4:46:34 PM (GMT-6)


elddiReMsihT
Regular Member


Date Joined Nov 2010
Total Posts : 111
   Posted 3/20/2011 11:42 AM (GMT -6)   
Thanks all, I'll see about trying the karaya and Friar's balsam when my skin has healed up a bit.

Ducridr: Wow, thanks for taking so much time! I did use an adhesive remover for a long time, but in recent weeks the pouch has been sticking so poorly that it has practically fallen right off me with no need for an adhesive remover! I also did the allergy test (except on my leg) and found out that I was really allergic to the Cavlion no sting barrier wipes. That is probably why my skin got as bad as it did. Obviously I stopped using them, and my skin has stopped getting worse but it wasn't getting better either. I'm not sure if I'm also allergic to something else or if it just couldn't heal up underneath everything. I don't think it's reacting to wafer removal because like I said the wafer has just been falling right off lately. Thanks for all your advice!
Diagnosed with UC in 2007
Flare in 2007 causing anemia requiring blood transfusions, eventually controlled by asacol and 6-MP.
Flared again in 2009 as 6-MP lost effectiveness, went on TPN and received more blood. Started Remicade, which induced remission.
Flared 2010; Remicade no longer effective.
Had 1st surgery of 3 step j-pouch at CC on 1/19/11. 2nd slated for April, and j-pouch in July!

ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 3/20/2011 6:36 PM (GMT -6)   
It's good that you found out what you're allergic to and it's something that can be eliminated without too much trouble. Is your skin weeping and that's what led to the wafers falling off? I had trouble getting mine to stay on when my skin was really bad. I used stomahesive powder to help my skin heal/protect my skin but have the wafer still stick (at least for a little longer than it had been). That was the only thing I put on my skin. My WOCNs said the trick was to make sure that you brush off any excess. Otherwise it makes it so your wafer doesn't stay on as long. I also washed my skin with Hibiclens in the shower each time I changed my wafer and I think that helped it to heal and kept my skin free of any residues that might keep the wafer from sticking well. Maybe once you get to the the point where you can use the adhesive on your wafer again, you can see if some of these things help you too.
Ducridr - 37 - female

Diagnosed w/ severe pancolitis 11/20/2007
J-Pouch surgery #1 of 3 on 8/21/2009!!!
Surgery #2 - 1/4/2010
Surgery #3 - 3/23/2010
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