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Posted 10/10/2015 4:00 AM (GMT 0)
So in April 2015 I started to develop a rash under my wafer. I used ConvaTec moldable convex since August 2014.
By May I couldnt keep a bag on my skin for longer than 12 hours as my skin under the wafer was incredibly weepy and oozing constantly. I was in the ER a few times trying to get a bag to stick and for pain meds. I saw a Wound and Ostomy Nurse at the Wound Healing Clinic in Green Bay, WI.
They took a lot of picutres and we tried a couple dozen things.
I also started seeing a dermatologist and my MD prescribed me Tylenol 3.

Switching to Coloplast got my skin to calm down enough that I was able to keep bag on for 24 to 48 hours without an ostomy belt.

My dermatologist prescribed me 5 different steroid ointments and creams. None of them did anything. I truly believe steroids have no affect on me. They didnt orally or IV for my UC.

After trying things for months with Ostomy Nurse I finally got a few days of wear time using 3M barrier spray. If skin was weepy I also did crusting method with stoma powder. Barrier spray really seemed to create a better barrier between adhesive/wafer and my skin. But after 48hrs max the barrier would break down and itch and weeping would return.

Keeping my stoma naked even for just 4 hours, my skin would be almost completely dry and start to heal up. But... yeah... even 4 hours is ROUGH. As Im sure anyone with an Ileostomy understands...

So - what does this rambling, super tired, half-butt written message mean?

It means I can not find ANYONE on Facebook support groups that has an allergy as bad as mine. One lady did respond and complain that she too only gets 48 hours max out of a bag before the itching causes her to basically rip the thing off... if the oozing hasnt already gotten it off. But she stopped responding.

One suggestion did help a bit... benadryl - but it makes me too sleepy for work! ( I have a very boring, non stimulating job.) I could take 3 at a time and still be awake... and the itching greatly reduced... but very tired.

I am thinking to try other over the counter anti-hystamines, like claritan and zyrtec.

Anyone here have any information on allergy? I really don't want to end up using the no adhesive Nu_Hope system. i HATE having to wear the 1 inch ostomy belts all the time to try to keep my bag on. I hate the way it makes me into weird shapes. That little belt alone makes me HATE my ostomy, despite how much I love it and how glad I am to have my life back. I guess there is k-pouch option too maybe someday... I've barely looked into THAT.

I am just hoping SOMETHING can help me skin. I want my life back - - again! I was getting 5-7 days out of my ConvaTec wafers soon after surgery until suddenly in April.
Def had a few bawling my eyes out night cursing myself for getting Barbie Butt.
But I am still glad I don't have to crap my pants multiple times a day while being constantly dehydrated and in pain.
Posted 10/10/2015 5:37 AM (GMT 0)
Katie, I am so sorry that you are having so much trouble.

I also developed a really bad allergy to the taped border of the Convatec Moldable with pretty much exactly what you describe with your "weepy and oozing" after just a few months of use. But, I love the moldable and found a perfect solution for me. You might try it before giving up.

I simply cut the tape border completely off and secure the disc with Brava Strips by Coloplast. I use 2 Brava strips, one on each side. I also cut a 3rd Brava into 3-4 smaller pieces and add these smaller pieces to the top and bottom to fill the small gap. In the end, the Brava strips completely cover all edges of the disc. So far, I have had absolutely no allergy to this set up. I normally get 7+ days wear.

However, key parts of my success begin with the use of Dan's recommended Tincture of Benzoin Compound around my stoma and the skin under the disc . It worked wonders for clearing up and healing my skin. Within just 3-4 days, it was nearly all cleared up. I use it for every change as a preventative--great stuff.

The next key part is the use of a full Eakin Seal. Some say you don't need it with the moldable, but I absolutely do.

I also use Hollister Gel Skin Prep Wipes for the part of my skin that is under the Brava Strips. Not sure I really need this, but I like them and, "if it ain't broke...", you know?
Posted 10/10/2015 11:44 AM (GMT 0)
I am wondering if the Bezoine Tincture compound would help too??? It's sticky, and will help the skin heal but it will burn like a b$tch when you apply it to your sore skin. But it will work. It may help protect your skin from the allergy as well.

I will do a test case. Every time I wear hollister, it makes me itch and want to rip it off within 30 mins. I will call them and get some samples and see if the Compound will help with the itching.

Katie, where are you located? I have a few bottles. Maybe I can send one to you?

Kelly
Posted 10/10/2015 1:38 PM (GMT 0)
Have you tried, like, every single wafer available? Just call every company there is & beg for samples. I'd start there. I developed a Hollister allergy, after a year + of great success- the skin around the weafer itches like mad, gets super red, sort of raised & bumpy... So I trim as much of the wafer as possible, & when it itches I apply Aquaphor, or some other super moisturizer type product.... also alternate with the Mio, which makes the itch bearable. It comes & goes, the itch. Granted, it's nowhere near as bad as what you describe. Does using an Eakin seal help at all? Surprisingly they really do allow for skin healing, despite covering everything up. Zyrtec is the best OTC for itching- I used to get mad hives, & after looking into it, found that was the most recommended for skin stuff. Try those too. I wouldn't be so quick to go to a k-pouch, cause you really have adapted to the ileo well- try EVERYTHING on the market, every single type of wafer, or barrier spray... try the OTC stuff. It's way to ealry to give up! And really, most WOCN nurses are just so-so about the ileo's- you'd think they'd be great, but I've only met 1 who knew her stuff- the others are all like "Huh???".
Posted 10/10/2015 8:49 PM (GMT 0)
Did you try the salts? Maybe those would help you...

I agree with Eva. I think it's great that the option for the kpouch exists but you've done so well with your ileo, it would be good if you didn't have to go through any more surgery. I have also seen how you've struggled with this and I know it doesn't seem to be getting better :( The problem with the kpouch is the same as with the jpouch. They use part to make the pouch. THen if you're unlucky and end up with inflammation in the pouch, you have to revert to a perm but you've also lost the part they used to make the pouch. I asked my surgeon about that and he said people end up doing well regardless and that it's rare to have to remove the pouch. I feel bad that this is such an issue for you, you were doing so well.
Posted 10/11/2015 1:42 AM (GMT 0)

embersglow1 said...

One suggestion did help a bit... benadryl - but it makes me too sleepy for work! ( I have a very boring, non stimulating job.) I could take 3 at a time and still be awake... and the itching greatly reduced... but very tired.

I am thinking to try other over the counter anti-hystamines, like claritan and zyrtec.

Absolutely, ABSOLUTELY try Claritin or Zyrtec. I mean this in the nicest way possible but the doctors who have been helping you with this issue are f-ing useless if none of them suggested a different anti-histamine after Benadryl helped. That's something a primary care doctor should have been able to come up with, to say nothing of a dermatologist.
Posted 10/11/2015 2:09 AM (GMT 0)
Stomocur sells a wafer that is for sensitive skin that is gelatin free. It cleared up my skin. It is also good for high humidity. Ask for samples of this product. I have no itching with this.

My skin does better if I switch products often also.
Posted 10/11/2015 11:28 PM (GMT 0)
Katie
The Benzoin Compound Tincture is a first aid product. It will help to heal your skin. I forms a waterproof film on your skin that will protect it from the wafer. Kelly is right. It will burn like #$#//& but only for a short time.
Dan
Posted 10/12/2015 10:49 PM (GMT 0)
Benzoin Compound sounds scary... where do I find this?

I need to try Salts yet otherwise I have tried EVERY other wafer possible.

I am not having an allergic reaction to the tape collar of the barrier - I am having a reaction to every last mm of the whole dang thing plus raised bumps around the whole thing.

I have tried Zyrtec with no results. Claritan is next.

I had an amazing ostomy nurse helping me. We tried a million different things. Eventually switching to coloplast allowed my skin to heal. I no longer have nonstop oozing weepy skin. Only occasionally and leaving my bag off for a few hours clears that up.

I love the brava half moons. I actually have them on right now to keep my bag on as the top right edge has peeled up completely.

This all started in April. And was very very intense in May and part of June. It is okay now but occasionally it will freak out and ramp up again really bad.

I wish I could list all the things I've tried so people would know I'm not a moron just giving up and whining. I'm doing EVERYTHING suggested to me.

I will try this tincture but am very very scared to do it. Anything that touches my skin besides 3M barrier spray BURNS - including all of the No Sting barrier and remover wipes. Like drop to the ground pain. I will try on my day off so I can keep skin out in air for a couple hours and hopefully will heal up enough that it won't be open raw wound cuz in May I literally threw up from the pain of some No Sting berries wipe...
Posted 10/12/2015 11:19 PM (GMT 0)
I wonder if it's worse with heat and sweat? I had really bad itching last night and it was REALLY hot here. Definitely sweat under. I changed and I've been in AC and I am doing way better.

Contact salts and get the convex. I have the guy's info there. I can send it to you if you need?
Posted 10/12/2015 11:19 PM (GMT 0)
My rash was just under the tape border and went away when I switched to tape less borders. Also call your supplier. They can make suggestions and will usually send free samples
Posted 10/13/2015 2:05 AM (GMT 0)
Embersglow...you can purchase the tincture from Amazon. I believe it was $6.33..no shipping cost, for a small bottle. You don't need much. I put it on a Q-tip and place it on my skin under the wafer. So far it has helped me. I had a sore which looked like an open ulcer, it got worse and started to bleed. I put the tincture on but covered it with a small bandaid. I sometimes put Neosporin on it. It has healed pretty well, but my new colorectal surgeon wants me to see an ostomy nurse because I still have redness around the stoma. My wafer doesn't fit tight around the stoma even with the moldable wafer, some stool still seeps out. Good luck to you.
Posted 10/13/2015 4:03 AM (GMT 0)
Katie, this is a long shot but might be worth trying. I had intense itching and redness (no raised bumps). I switched the soap I was using in the shower to a very gentle organic kind with all natural ingredients. No harsh additives or perfumes. It went away. Apparently the residue was causing me irritation. Do you recall if you started using a different brand of soap when this started? Might be worth looking into. Hope you find some relief soon. After all you've been through....you don't need this!
Posted 10/13/2015 11:18 AM (GMT 0)
Have you tried diflucan? I'm wondering if this could be yeast. It would have to be taken for probably 2 weeks if it is. Skin yeast can be stubborn.
Posted 10/13/2015 12:24 PM (GMT 0)
Truthfully, if you've tried every type of wafer/barrier & ALL of them irritate your skin- I doubt it's the ostomy product, but rather, some funky skin thing going on. I'd try a dermatologist- worth a shot. What are the odds that you'll be allergic to every single wafer out there, know what I mean? Is your skin normally senisitve overall, do detergents, jewelery, dyes, fragrancves anything irritate it? Has it ever, at any time in your life? I don't doubt that it's itchy & irritated, but I am doubting the ostomy product as the culprit. Do you see a therapist? Don't be offended, it could be psychosomatic in part as well.
Posted 10/13/2015 1:01 PM (GMT 0)
I agree with Eva Lou - this sounds like a job for a dermatologist now.

Oh wait. You said in your first post you started seeing a dermatologist. Were they of any use at all? Personally I'm not too impressed by somebody who prescribes you 5 different steroid creams/ointments, despite the first 4 not working and your past history of steroids not working for your UC either. You can always seek a second opinion and in this case I think I would encourage it.

If Benadryl helped, it may be worth trying prescription antihistamines, which are probably stronger than the OTC ones. On the other hand if Benadryl made you sleepy, these will probably knock you right out, so... I dunno.

I'm really sorry I can't help more. One way or another I hope you can fix this skin issue permanently. I do think the Salts bags are worth giving a go: I wore them for a while and their wafers are pretty gentle.
Posted 10/13/2015 1:52 PM (GMT 0)
I know of someone who had an allergy as bad as yours; he ended up having his ostomy turned into a k-pouch and has lived allergy free ever since. Talk to your surgeon about this; since your allergy is so bad this should be covered by insurance.

Sue
Posted 10/13/2015 8:19 PM (GMT 0)
Katie
Benzoin Compound Tincture is a first aid product. It helps to heal and protects the skin from poop. It dries sticky. I do not use soap, adhesive removers, powder, seals, etc. Soap and adhesive removers leave a non-sticky residue. Nothing can stick to powder. I clean with only water and paper towel. Dry with a hair dryer. Apply BCT with a q-tip. Dry again. Apply the wafer. The BCT is waterproof. The wafer will be separated from your skin. I think this will stop the allergic reaction because the wafer does not touch your skin. I get Geritrix Benzoin Compound Tincture from www.drugsdepot.com Search for product c2540383. It's 2oz for $4.50 plus shipping. Try. It.

Dan
Posted 10/14/2015 2:38 PM (GMT 0)
My thought would be this is just a manifestation of an allergy to quite possibly something you're eating or inhaling. If you ingest something your body doesn't like, it will react in some way. If you have an already compromised area of your body, that will be the exit point so to speak. It's just the way our body tries to rid itself of an unwanted invader.

I agree, anti histamines may help.

Good Luck !
Posted 10/14/2015 2:38 PM (GMT 0)
I was also going to suggest the possibility of a yeast infection, though you may have considered that long ago. I had one under my wafer once and was able to clear it up by applying athletes foot powder when I changed the wafer.

Although my issues aren't as bad as yours, I can certainly sympathize with your problem. I have had my ileo for over 2 and a half years now and have yet to find a wafer that doesn't irritate my skin at least a little. Well, there is ONE that works very well for me...the Convatec Durahesive with NO tape collar. Problem with that is it doesn't come in a convex version. They do make convex inserts, but they aren't enough and I get leaks at night because my stoma goes from very long during the day to almost flush when I lay down to sleep. At this point I am using 2 different set ups that do irritate my skin to some degree, and just switch back and forth between them. I still have A LOT of the Convatec wafers my skin likes, and might use those intermittently to give my skin break and just change much more often.

I keep reading about the Benzoin Compound here, but have also been hesitant to try it out for many reasons.

Good luck getting this all sorted out!
Posted 10/14/2015 2:52 PM (GMT 0)
UC
What reasons?

Dan
Posted 10/14/2015 4:01 PM (GMT 0)
Well, I don't know why I typed many reasons, because there aren't really many...just a few....I exaggerate! Most barrier wipes burn my skin big time, and I've heard Benzoin can be even worse, which doesn't sound fun. I have also read that it is not recommended for long term use of any sort, and even though I know plenty of y'all DO use it long term, I figure there is a reason it is advised not to? I guess it couldn't hurt to try and even just use every once in a while to minimize irritation.
Posted 10/15/2015 12:08 AM (GMT 0)
UC
Whatever you put on your skin, if it burns your skin is irritated or raw. BCT does not burn on healthy skin.
Not recommended for long term use......by who and why?

Dan
Posted 10/20/2015 4:42 PM (GMT 0)
I have read online, and been told by a few nurses from various specialties, that BCT isn't really intended for long term use. It can bond to the skin so strongly that there is the potential to damage the skin while removing the wafer/residue that is left behind. With proper precautions, I'm sure it could be better than the alternative of leaking and the skin damage that can cause.

That said, I am probably going to order some to at least use from time to time, if it works for me. I think Edgepark sells it, and I've blown out my "out of pocket max" for insurance this year...so it would be free.
Posted 10/20/2015 9:35 PM (GMT 0)
Wonder what "long term " is. I have used it consistently for seven years with nothing detrimental. The nurses I have talked to never heard of it. It comes off with the wafer leaving no residue. I'm going to a new support group meeting tomorrow. Wonder what the nurse will say about it. The BCT that Edgepark has had is not the same. It is not waterproof. Geritrix BCT is waterproof. It resists the effect of poop.
This is my own personal opinion from seven years experience.

Dan
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