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Allergy to wafers?

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(@madrikh52)
Joined: 6 years ago
Posts: 44
Topic starter  

Hi, I'm new here. I have had a permanent colostomy for 5 years due to a recurrence of colorectal cancer. 

About a year and a half ago, I developed intense itching under my wafer. Since that time I have been to the WOC in my area and even visited one in a large metropolitan area, and have yet to solve this problem. The itching doesn't occur 100% of the time, but more like 75% and at times can be so intense that I can't sleep. Also, I itch under the entire wafer not just around my stoma. When I change, there is redness and often a rash on the entire area under the wafer. This last wafer had a bright red ring around the outer edge that I could easily see while the wafer was in place.

Suffice it to say that I have tried wafers, seals, adhesive wipes and sprays, powders, etc, from the major companies (convatec, coloplast and hollister), and have experienced itching with almost all of them. The few that did not seen to cause itching did not contain stool odor as well as I desire. 

Has anyone experienced this and if so, what are some ideas? I have looked at nu-hope, which is a non-adhesive product, but I have IBS and anywhere from 2 to 6 BMs daily, sometimes including very loose stool that fills my bag completely very quickly, so I'm just not sure that the nu-hope design would be secure enough for me.

In the past I have attempted to find the ingredients in wafers so I could compare and maybe figure out what's bothering my skin, but I have not been able to find this information. Perhaps, I haven't looked hard enough. The last 18 months have been crazy for me (including the death of my mom and sister) so this issue has frequently taken a back seat.

Thank you in advance,

Marci


   
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VeganOstomy
(@veganostomy)
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Joined: 10 years ago
Posts: 4193
 

Hi Marci,

Welcome to the forums and thank you for posting this!

Did you ever have any formal allergy test done? Is there anything that you can think of that might have triggered these reactions in the first place? Any changes in soap or shampoo you were using back then? 

The ones that seemed fine, but didn't contain odor well - which ones were they? If all other options fail, perhaps you can work towards solving the problem with those pouches through various means (i.e. pouch deodorants).

I was going to suggest the non-adhesive products. I do not have any experience with them myself, so that may be an option. The liquid output can be thickened up using gelling products. My concern is that if the bags fill too quickly, I don't know how well supported they are. 

I'm hoping someone who has tried them could chime in.

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@zvitusk)
Joined: 7 years ago
Posts: 396
 

Has your WOCN suggested that it might be a fungus?  Antifungal powder might be a solution to your itch. If it works,  great!

Eric's idea of the process  of eliminating allergic substances one at a time is very sound. Just lengthy. 

Good luck . 

 


   
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(@madrikh52)
Joined: 6 years ago
Posts: 44
Topic starter  

 Thank you both for your replies! 

 I do have sensitive skin so I tend not to change products like soap, lotion etc. and I also stick to unscented and mostly natural products as well. 

 I have not ever had my skin checked for fungus or any other type of infection. But I have treated it with antifungal powder from the WOCN without success. 

The Mio system didn’t itch but I could not get adequate odor control even with 2 deodorizers. Also, the wafer that has the moldable opening , I think it’s Convatec, didn’t itch, but because I shower daily, and it has tape rather  then a rigid wafer, I felt that I could never get it completely dry. 

 I think I read on this forum that someone had gone to a dermatologist and was actually diagnosed with a certain type of infection then given a foam treatment product that did not interfere with wafer adhesive. Maybe that’s my next best option… To visit a dermatologist. 

Marci


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4193
 
Posted by: madrikh52

 Maybe that’s my next best option… To visit a dermatologist. 

Yes, that would be a great plan!!

When you tried the Mio's and noticed odors - were you able to identify where the odors were coming from? Was it from the filter, outlet, or under the wafer itself? 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@bubbles)
Joined: 6 years ago
Posts: 244
 

Check out Eric's video on the shower gaurd apron . It works really well I have one . You can shower and wafer stays dry . I found it on Amazon . 


   
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(@madrikh52)
Joined: 6 years ago
Posts: 44
Topic starter  

Honestly I would have to try the Mio again to know what the odor problem was. Thanks!


   
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(@madrikh52)
Joined: 6 years ago
Posts: 44
Topic starter  

Thank you Bubbles, I will have a look at that video.

Marci


   
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(@shawne)
Joined: 7 years ago
Posts: 50
 

Have had same issue tried every product out there with same result.  Have used flow vent this will clear up rash and stop itch is a steroid that is in a puffer for your lungs will not interfere with wafer sticking be aware will thin out your skin with repeated use.  The foam you are asking about isClobex I think that too is a steroid both require a prescription.  In my case I have adrenals that will not produce properly was weaned down to 1.5 mg of prednisone and started with the skin problems ended I the hospital for another problem and my dosage was up to 5 mg and my skin was great decided I had gone too low on the prednisone and my body was telling me this by the reaction I was having to all the wafers so instead of going back to 1.5 am now at 3 mg without a problem will gradually decrease again and watch for a return of the rash and will knowi am too low and go back up again.  Have been told I will never get off the pred and it is my decision as to what dosage I feel is best for me. Hope you find what works for you seeing a skin specialist will give you answers.  Best of luck.


   
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Barbara
(@msbjlee)
Joined: 6 years ago
Posts: 452
 

Shawne you are right about the prednisone. It is a tricky game to play. I too am at 5mg daily and have been for years. When i atart weaning off that dose, i get to 3mg (sometimes 4) and my rheumatoid arthritis starts flaring and my glucose numbers go wonky. I too have been told I may never get off of it and i stay where I am comfortable.  I hate what the combination of predisone and aspirin do to my skin. It is so thin now that I tear rather than cut!! 

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


   
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(@shawne)
Joined: 7 years ago
Posts: 50
 

Been there bruise very easy when I was at 20 mg for three years the top layer of my skin would peel away if I bumped it would stick it back down put gauze and paper tape to hold.  One of the reasons I opted for the ileostomy and removal of my jpouch was I coul not take the side effects of the pred any longer I had stress fractures of my back the recovery from the surgery was hard and included a heart attack two days after the surgery still dealing with that as I now have a blockage some where.


   
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(@patrick)
Joined: 6 years ago
Posts: 4
 

Might b your soap. Most soaps have moisturizer in them which affect how the appliance ultimately sticks because they never really rinse off. I use ivory bar soap specifically because it has no moisturizer in the bar form. Hopefully this helps


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4193
 
Posted by: Patrick

Might b your soap. Most soaps have moisturizer in them which affect how the appliance ultimately sticks because they never really rinse off. I use ivory bar soap specifically because it has no moisturizer in the bar form. Hopefully this helps

This is a very good point for anyone who has trouble with their wafer not sticking right. 

My daughter bought a new shampoo the other day and I had used it a few times and noticed that the edges of my wafer were peeling quite a bit (when they usually NEVER do that). 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@john68)
Joined: 7 years ago
Posts: 2022
 

yep its a fair point, if its any help to any one I use baby shampoo and a shower gel called simple. Lots of hair and body products now a days seem to have added moisturiser for healthy skin and hair so look out for the most basic product when shopping

ileostomy 31st August 1994 for Crohns


   
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