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Anyone been allergic to their ostomy appliance?

Posted: Sat Jan 29, 2011 3:35 pm
by tammylayne
I am going out of my mind!!! I have had this problem of extreme itching for the past 7 weeks. It usually is irritating for 20 minutes or so, then goes away. It happens several times per day. I itch all under the wafer. Not just right around the stoma, but everywhere that the wafer touches.

The first 2 weeks the nurses were putting the Cavlon (sp) spray on me, and I thought that was the problem, so they stopped using it and used the coloplast skin prep wipes. I had the ET specialist look at it yesterday, and he says I am not allergic, nor do I have a yeast infection. Today...I thought I was going to lose my mind!!!!!! I took 2 benedryl and an ativan. I finally took off my newly applied appliance (yesterday) and had a shower in hope that the water could give me some relief. I am desperate. I used the Cavlon spray again, in hope that it might help as advised to me by the owner of the biggest ostomy supply store in town. She truly believes I need a different appliance, that I am in fact allergic to the Coloplast. They are closed until Monday. We have a drug store that carries supplies, but they sell them, they don't know anything about them, ie what size I would need etc.. I don't want to spend a hundred bucks on the wrong supplies.

Have any of you ever been allergic to your appliance? Any suggestions? I am afraid I am going to rip my skin right off!!!

Thanks for listening...

Tammylayne

Re: Anyone been allergic to their ostomy appliance?

Posted: Sat Jan 29, 2011 3:44 pm
by nicola smith
Some drugs will cause itching...gabapentin for one. It is perhaps worth looking into side effects of any drugs you are on to see if they could be the cause. If you aren't on any drugs, then this suggestion is useless and I apologize in advance.

Re: Anyone been allergic to their ostomy appliance?

Posted: Sat Jan 29, 2011 3:53 pm
by tammylayne
No worries Nicola...but no, I am not on any meds. Wish it was that simple though.

Thanks for the thought...

Tammylayne

Re: Anyone been allergic to their ostomy appliance?

Posted: Sat Jan 29, 2011 4:08 pm
by Lee
Hi Tammy,

Yes I did have an allergic reaction to my appliance a few years back. And I also had itchness directly under my stoma along with small bumps. I had to switch from Convatec to Hollister products, problem cleared up. Stop using the prep spray until you get things under control. Use plain soap and water (no perfumes) or I recommend Aloe Vesta by Convatec to clean the area. Make sure the area is dry before applying the wafer. Keep it simple around stoma sight until this problem is cleared up and you may need to change your wafer every few days until problem is under control.

If you can you may want to get "Micro-guard Powder Antifungal Powder with Miconazole Nitrate 2%" by Coloplast. I know you said you don't have a yeast infection there, but when I do, it itches like crazy (directly under my wafer, ESPECIALLY when the wafer is wet) and maybe, just maybe, it might help.

I believe most wafers come in inches and MM sizes. Take a wafer with you to that store, determine the size and see if you can try another product. If the store you mention sells a lot of ostomy supplies, they should have some type of catalogue and you should be able to cross reference from one product to the next. Explain your problem, hopefully they can help you.

Hope this helps. There is no reason you are suffering this way, dealing with itchness is NOT part of living with an ostomy. I've had those itchy in the past, and there are SOLUTIONS out there. Don't give up hope. I will be glad to help anyway I can.

Lee

Re: Anyone been allergic to their ostomy appliance?

Posted: Sun Jan 30, 2011 10:07 am
by tammylayne
Well, I had another interesting night. I took off my appliance yesterday afternoon and had a long shower, hoping that might calm the skin down around the site. I used the Cavelon spray. The itching stopped. Then around 3 am this am, I had 2 blowouts, one of each side. I got up and changed it. Sprayed on some of the Cavlon spray and let it dry, put on a new wafer, and it refused to stick to my skin in over half of the places. I took it off, washed the entire area with warm water, and put another wafer on. It stuck. Today, I can feel the itchiness starting. I have a big red ring that shows the outline of the wafer, then another smaller ring around my stoma. Something is definately going on...I did have several glasses of juice yesterday, and the ET nurse I saw on Friday did say that sugar and high amounts of Vitamin C can break down the wafer quickly. He said I should try and only have 1 glass of juice per day, especially if it is OJ, as this will give me all the V C I need for the day. More than that could be a problem for me. I guess water it is...oh joy...

Tomorrow I will try and get ahold of the ET nurse, AGAIN, and see what they can recommend. This is becoming an expensive hobby, yesterdays little adventure was over $40, this could really get expensive. I hate the idea of having to buy full boxes of everything just to see what might work. I think it is a shame these ostomy supply companies can't sell individual wafer/bags for trial. I know I could call the companies directly, but that would take a week or so to get here I'm sure.

I did get a couple samples of the Eakin seals that everyone mentioned, will use one the next time my nurse comes to help me, as I am not sure how to use it. Maybe that will be the solution I need. My ET nurse said that I really don't need it, and that they are really expensive, but on the other hand, he said it might not hurt to try one.

Ugh.......

Tammylayne

Re: Anyone been allergic to their ostomy appliance?

Posted: Sun Jan 30, 2011 10:52 am
by Gaelen
Tammylayne, every ostomy supply company will send two or three samples of different products - express mail or fedex if needed. If you called and explained the situation, you'd probably have a half-dozen different types of appliances by the end of next week. ;)

Considering that you're having issues, I'd call someplace like Edgepark 1-800-321-0591 open 8am - 8pm EST, explain the potential allergy issue, ask them which product(s) they'd recommend, and ask them to express or fedex you samples.

Re: Anyone been allergic to their ostomy appliance?

Posted: Sun Jan 30, 2011 11:37 am
by Surroundedbylove
tammylayne wrote:I did get a couple samples of the Eakin seals that everyone mentioned, will use one the next time my nurse comes to help me, as I am not sure how to use it. Maybe that will be the solution I need. My ET nurse said that I really don't need it, and that they are really expensive, but on the other hand, he said it might not hurt to try one.


With the Eakins seals, you mold them to the right size to fit around your stoma and somewhat flatten them. Think of them as used in place of the paste. Once the opening is exactly the size to fit round the stoma you then put it on the skin, then apply the wafer and appliance to the seal and skin. Hold it firmly against the body with your warm hand for at least a minute. The warmth helps get a good seal.

Trying one may help determine if you are allergic to the wafer because the seal itself will cover a fair amount of skin with the wafer touching only other skin.

Another way to see if you are allergic to the wafer rather than something else going on - as crazy as this may sound - is to apply a wafer - just the wafer, no appliance - to another part of your body - simply the other s-de of your abdomen perhaps. See what happens on that side without the ostomy output factoring into the mix. Could help in figuring out what is going on.

Re: Anyone been allergic to their ostomy appliance?

Posted: Sun Jan 30, 2011 12:16 pm
by living skies
My husband had this problem almost immediately. After much trial and error we found he was allergic to the adhesive on the back of the wafer. He now uses non-adhesive barriers with paste and tapes them all around the sides with micropore tape. He also stopped using the prep wipes and uses only mild soap and water. No problems ever since.
Judy

Re: Anyone been allergic to their ostomy appliance?

Posted: Sun Jan 30, 2011 1:03 pm
by weisssoccermom
I never had an ostomy so don't want to sound stupid by saying anything that absolutely doesn't make sense but.....I am assuming that there is adhesive on them, correct?? Makes sense. At any rate, when I had my port, the Tegaderm covering that is routinely used drove me nuts. My skin itched, I developed welts, the skin was red.....I just kept slowly but surely pulling the edges off and then cutting them back with a manicure scissors thinking that was the problem. Of course, it wasn't & it only got worse as time went on and drove me absolutely NUTS! When the took that patch off at the end of the week (it was during the time I was on chemoradiation) the skin was absolutely AWFUL! I still have the scars (although now very vague) from that darn Tegaderm. My point is, I am extremely allergic to the adhesive and can't have things like that on my skin without the incessent itching, rash and welting. It seems logical to me that you could easily be allergic to the adhesive that holds everything in place and I would assume that the different products could have different adhesives and at least one would be hypoallergenic - I mean, you certainly can't be the first person to experience this! I know that besides paper tape there is a heavy duty type of covering (for IV sites, etc.) that is called MeFix (or something like this) with some heavy duty hypoallergenic adhesive (it was about the 4th or 5th one they tried on me and honestly not routinely used but dang it worked) so I would have to believe that for ostomy appliances, there would surely be something similar - something with a heavy duty yet super hypoallergenic adhesive.

Jaynee

Re: Anyone been allergic to their ostomy appliance?

Posted: Sun Jan 30, 2011 2:52 pm
by Lois7718
This may seem a bit odd, but have you tried putting the adhesive somewhere else on your abdomen? It sounds to me like the skin around the stoma is so compromised you can't rule an allergy in or out. However if you reacted similiarly in an area that was not compromised you might have some answers.

Re: Anyone been allergic to their ostomy appliance?

Posted: Sun Jan 30, 2011 9:44 pm
by tammylayne
Well, the journey goes on. Right after my last post earlier today, I sprung ANOTHER leak, this one exploded out the top. I believe they call in pancaking. This is getting to me...3 leaks in less than 12 hours.

Before I had a chance to post this, I had another blow out. That was number 4!!!!!!!!!!!!!!!!!!!!!! This time I used the Eakin seal. My visiting nurse called shortly after, I told her what has been going on, and she doesn't know what to recommend. Her concern about me using the Eakins seal is that it might now allow my convexity wafer to work properly. I hope she is wrong. She was putting in a call to their ET specialist to get in touch with me. They have been trying to get this done for 7 weeeks now, and still no visit. I am afraid to eat anything, go to sleep or leave my house.

Tomorrow I will call all the appliance companies and ask them to semd me some samples. Hopefully one of them will have something for me to use. I have had my stoma for 8 weeks tomorrow, and I have had on average 2 leaks per week, sometimes more. This is no way to live.

Oh, I also tried the idea of putting a wafer on the other side of my stomach, and after about an hour it started to itch. Not like around my stoma, but there was a definite reaction going on. I am also wondering if it is something I am eating, although my diet is fairly plain. Dairy is what I am wondering about, but would that cause enough gas to create a blow out?? I am grasping now...

Welcome to any ideas and thoughts...

Tammylayne

Re: Anyone been allergic to their ostomy appliance?

Posted: Sun Jan 30, 2011 10:00 pm
by Lee
Tammy,

Sorry to hear you are still having problems. Have you been able to try a different type of ostomy product?

Regarding your blow outs, maybe you're not cutting the wafer wide/big enough and when you get ready to out put, your stoma gets bigger than the wafer opening and you blow out.

Another possibility, because you've applied so many wafers in a short period of time the skin is raw and not able to grip the wafer better. Is the skin under the wafer, possibly shiny?

Just some possibilities, hope you get answers and results soon.

Lee

Re: Anyone been allergic to their ostomy appliance?

Posted: Mon Jan 31, 2011 1:04 am
by Cj51
When I was calling around for samples, I heard that Nu-Hope was known for their hypoallergenic stuff. You might call them for a sample and see if that's better.
I'm sorry, that might not be much help, but I don't have any other suggestions and I didn't want to not say anything in case this is the solution for you. I'm so sorry you're having trouble. I've suddenly been having constant leaking as well--and it's absolutely horrible. It really puts a damper on your life, as well as makes your skin super sore! I sure hope you find a solution soon!

Hugs,
Cj

Re: Anyone been allergic to their ostomy appliance?

Posted: Mon Jan 31, 2011 7:49 am
by Bev G
Hi Tammylane:

I don't have an ostomy, so I want to preface what I'm going to say by saying that first. The idea about putting the wafer elsewhere on your body to see what would happen was fantastic. The fact that the "virgin" area reacted the same way was really informative. I think you've diagnosed yourself! Adhesive allergy. They are apparently becoming more and more common (like nut allergies in kids). My home nurse was just talking to me about this a couple of weeks ago. I have used an insulin pump for about 25 years. The indwelling needle (which is changed by me every three days) has an adhesive patch that holds it in. I had SEVERE skin allergies to a couple of the product's adhesives. Felt and looked exactly as you're describing and drove me insane. I am also allergic to most tape. So, I think Gaelen's suggestion about calling the place that stocks hypo-allergenic supplies is the best idea going. If you're feeling overwhelmed, could you use some help making calls to suppliers? I do nothing but sit on my butt all day, I would be delighted to make some calls asking for samples for you if it would help. Just say the word. I'm so sorry you're going through this. These skin things can be just horrible. If you want me to make some calls, PM me your phone number, I'll call you for the details and will happily call away for you!

Love, Bev

Re: Anyone been allergic to their ostomy appliance?

Posted: Mon Jan 31, 2011 9:06 am
by Bill5107
Hey Tammy, so sorry you are having so much trouble. I know how frustrating it can be!

I had INTENSE itching frequently early on. Maybe not quite as often as you describe, but I too couldn't wait to get the old itchy stuff off and try again...and again..and again. I also know I have sensitive skin, so I knew I had to get on top of it pretty quick.

You describe having blowoouts, I also had leaks, though most of the time I was able to catch them in time to prevent much mess. (most of the time :oops: )

I don't know if what _my_ problem was matches yours, my colostomy produces fairly well formed output most of the time, but take a read and decide for yourself

1.) When I applied my flange, I was stressing the skin a bit so that there was sheer pressure on my skin under the flange. That led to irritation at the outter edge of the flange, which baffled me for a while. I would end up with redness and itchy skin at the outer boundary almost "picture framing" the flange. Luckily that redness came and went quickly and once I stopped stretching the belly skin as I applied the flange, it seemed to subside substantially.

I also had to make sure the flange stuck and didn't touch/letgo/touch. IF the flange is at all loose at the edge, the loose bits will irritate my skin. This is an application issue again, and requires clean, dry skin without any soap residues.

2.) There was also a very sharp and intense itch near my stoma. It took a while for me to finally decide that it was from output getting under flange and/or the flange not adhering well(hence leaks). It would alternately stick/not stick, causing irritation. What worked for me, and I know others will think there are better ways, I just make sure to apply protective barrier, let dry, apply protective barrier again, right up against stoma, then apply a "bead" of paste in the crack between the stoma and the skin so when I put the flange on, the paste oozes slightly between flange and stoma making a nice seal.

Initially I used paste in the areas where the leaks would first start, as if to fill a void, and that worked well at stopping those leaks, but it was not the right solution overall. Once I got the flange to stick better I only needed paste around the stoma (in the crack between the stoma and the skin)

By doing this I have been able to eliminate the ring on the skin around my stoma and Rosey has been much happier since. I have tried from time to time dropping the paste or the barrier wipes without much luck as redness returned in both cases.

Good luck, I hope your WOCN can help you out soon!