Questions re. allergies to ostomy adhesives

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Probiotic
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Date Joined Mar 2007
Total Posts : 2630
   Posted 3/19/2010 1:47 AM (GMT 0)   
I am pretty close to commencing j-pouch surgery for my UC and was curious as to how frequent allergies are for the adhesives or other parts that attach to the skin, and if typically these problems can then still be worked around by using a different brand.  Also, do people often get allergic after years of good tolerance?  And what in heaven's name does someone do if they have poor pouch function yet are allergic to all adhesives- just suffer miserably forever?  I don't mean to sound downbeat at all but because I would be be doing a 3-step, and thus expect at least 6 months of appliance-wearing- and also would like to have the option of going to a permanent ileo if the pouch ever fails- I'd just like to know the stats.  Thanks!

"In order to save the village, we had to destroy it." -- Medical proverb. 
 


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 3/18/2010 8:52 PM (GMT -6)   
Questions are good.

I alternate between two types of appliances when i seem to be itching alot.
Although, someone once told me that the stuff they use is supposed to be hypoallergenic. I don't know if that's true.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
i only take vitamins now, when I WANT to. :)
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6548
   Posted 3/18/2010 9:00 PM (GMT -6)   
i think, if you have problems with, say bandaids, you are more likely to have problems with reactions.
I dont think it is extremely common, and each brand is made slightly different, so most people seem to have luck with at least one or two of them.
If you have irriation you can use powders and such on the skin to keep the sticky from your skin, although it shortens wear time.
I think there are ways around pretty much any of the problems.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3037
   Posted 3/19/2010 5:24 AM (GMT -6)   
I don't think it is very common to be allergic to ALL the products...so like it was mentioned, you could try another brand if you find you are sensitive to a specific kind. I also believe there is one that is latex-free...but I cannot remember the name right now.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 3/19/2010 6:16 AM (GMT -6)   
I don't think I'm actually allergic but my skin is very sensitive and everything itches a lot
26 year old female
Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
4/6/10 Going to try to go back to the J-Pouch again
Imodium (8/day), Questran (3/day), TPN 12 hours/day, IV fluids 4 hours/day


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5293
   Posted 3/19/2010 7:23 AM (GMT -6)   
We had a member at www.jpouch.org who had a permanent ileo and he was allergic to all adhesive products. After a few years of misery he had his ileo converted to a k-pouch and he has been fine every since. I think this reaction is extremely rare and in all my years I have only heard of one incidence.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2630
   Posted 3/19/2010 7:30 AM (GMT -6)   
Thanks for the all the great responses. Suebear- interesting to hear about the k-pouch. A PM friend of mine on jpouch.org said they were allergic to all adhesives even though the pouch function is now lousy, so it's interesting to hear about the kpouch as a fallback option as well.


"In order to save the village, we had to destroy it." -- Medical proverb. 
 

Post Edited (Probiotic) : 3/19/2010 7:33:06 AM (GMT-6)


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 3/20/2010 9:04 AM (GMT -6)   
I am allergic to the adhesive in plastic band-aids and plastic tape. As a result I started wearing a tape-free wafer right away (no tape on the edge). I discovered the hard way (bad skin allergy reaction) that if I did not get ALL the old adhesive off when I changed my wafer that I also had an allergic reaction to what was leftover. My ostomy nurses indicated that if I ended up being allergic to both of the wafers (best for sensitive skin according to them) that they tried on me I would probably have to go to an adhesiveless system. They do exist as do methods to modify a standard system to make it adhesiveless - you just have to change your appliance more often. I use an adhesive remover, remove my appliance in the shower when I change, and wash my skin w/ hibiclens as my final step to make sure that my skin is as clean as I can get it and there is no residue from the adhesive remover (oils) or soap. I am a 3 stepper also and am on my 7th month with Arnold (my ileo). Once I figured out the process that worked for me I have had no skin issues except when I try to get a few to many extra days and leak (my fault).

One way to test for a skin reaction before surgery is to ask for samples of different wafers from the ostomy nurses that you will be working with and just cut a piece of each and put it on your abdomen (make sure you remember which one is where). Wait 3-7 days and see if your skin reacts. That way you will know if you have a bad reaction to any of the wafers before you go into surgery which could save you a lot of pain and hassle after surgery.

Good Luck!!
Ducridr - 36 - female

Diagnosed w/ severe pancolitis 11/20/2007
Asacol - 6 (400mg) 2x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 15 mg (started at 40mg Nov 08 - off June 09), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day) Coumadin (for blood clot) 5mg/day, 1st Remicade treatment 2/4/2009, 2nd - 2/18/09. Currently getting Remicade every 4 weeks.

J-Pouch surgery #1 of 3 on 8/21/2009!!!
Surgery #2 on 1/4/2010


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3037
   Posted 3/23/2010 5:32 PM (GMT -6)   
Ducridr~thanks for that information!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 3/25/2010 5:07 PM (GMT -6)   
NP. I think I'm one of the few that had a known adhesive allergy concern prior to surgery so the possibilities were addressed with my stoma nurses in advance. That way I knew that there was a way to work with my ileo even if I was allergic to all the wafers. I figure that it's good info to get out there so that people know that there are options.
Ducridr - 36 - female

Diagnosed w/ severe pancolitis 11/20/2007
Asacol - 6 (400mg) 2x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 15 mg (started at 40mg Nov 08 - off June 09), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day) Coumadin (for blood clot) 5mg/day, 1st Remicade treatment 2/4/2009, 2nd - 2/18/09. Currently getting Remicade every 4 weeks.

J-Pouch surgery #1 of 3 on 8/21/2009!!!
Surgery #2 on 1/4/2010
Surgery #3 scheduled for 3/23/2010

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