Okay, I am so over this. I currently have a temp ileo since October to try and get my fistulas to heal. I was used to dealing with the ileo before, so I ordered my same supplies as I did after surgery #1. Suffered extremely bad itching and red, raw skin. Leaks due to inflammation. I tried 3 other systems to see if I had somehow developed an allergy to something in the Hollister system I use, but no relief. I've tried the Nystatin powder to see if it helped, but that just makes the wafer fall off sooner. The funny thing is, all of the redness and abraded skin is over the area where my scars are (over the spot where my bellybutton used to be). The opposite side is fine. So I'm wondering if this is a reaction by the "scarred" skin to the wafer. I'm changing the appliance every day because I cannot get a good seal (so many surgeries that my abdomen is a bit lumpy). I just ordered some hy-tape to see if that helps. I do work out rather vigorously every day and I'm wondering if somehow getting sweaty is exacerbating the issue...??? Any thoughts would be appreciated. I've got to figure out something for the next 3 months until I can (hopefully!) be rid of this thing.
Thank you!!!

Hi Michelle,

It could very well be that your scars are getting irritated by the heat of working out. My scars still get itchy from time to time and it's been 2 years since my last abdo op.

I use a non-greasy ostomy barrier cream which has the same ingredients in it as antiperspirant deoderants. Unfortunately you can't get it on your side of the Pond but I know one of our members here (I think it's Rae) uses a fragrance-free antiperpirent deoderant under the white tape part of her wafer. You have to make sure that it leaves no greasy residue as a lot of deoderants do have moisturisers in them.

Failing that you might be able to get a pharmacist to make some up for you. Here's the ingredients listed in my cream:

Aluminium Chlorhydrate 2% in an emulsifyed base (contains Lanolin)

The other thing which might help is to spray some of your regular antiperspirent deoderant under where your bag sits (not under the wafer though) and this will help to prevent the skin surrounding your wafer from getting too sweaty when you work out. I do this every time I've showered because I used to have terrible trouble with a sweat rash when I worked out or in hot weather. This really seems to help prevent the edge of my wafer from lifting as well as making me smell nice.

Hope you get some relief soon.

Take care

Shell

I had a terrible rash that I thought was yeast (and it may have started out that way) but the Nystatin powder was no longer helping. My PCP gave me a steroid cream, like Hydrocortisone but stronger, and it worked miracles. I thought I was going to lose my mind because of the pain and itching and the cream helped significantly in a day or two. If you put the cream on, obviously the tape won't stick to it, but I've found a fix. I put the cream on and rub it in really good, then sprinkle Karaya powder overtop, which makes the greasyness go away, then spray on a barrier (I uses Nexcare liquid bandage spray that I get at Target).

I've also found that cutting the paper tape part off and using a cheap white ostomy belt allows it to heal much faster and REALLY helps to hold the wafer on when it starts coming off. I've made it an extra two days when using th belt when I could actually just lift the entire thing and see my stoma! I was trying to let my skin rest and didn't want to do a change yet.

Good luck!
Erin

I always trim my wafer tape so that as little of my skin as possible is covered. I leave probably only 1/4" of the white tape all the way around. That might help a bit.

The other thing is that with working out a lot, you may be developing issues with where your pouch hits the skin. I had terrible trouble with this a few weeks back as my pregnancy was advancing. You can get a pouch cover, or if you are lazy like me, put a tissue around the wafer making sure that the tissue extends beyond where the plastic of the pouch can reach.

You also might try using a fresh pouch for your workouts and then putting on a new one after you have showered and dried off...heat and sweat definitely create more issues for me.

One other thing to try if things are really bad is to use part of an eakin seal on the irritated area to protect it while it heals. Then put the tape right over it. Might buy you some time.

Thank you!!! I am going to give some of these suggestions a try and I'll let you know what happens.

Michele,

First thing you need to do is get your current irritation under control. I cut off the tape around the wafer, stick just the wafer on and use a belt to hold it in place. You’ll need to change the wafer daily, but you’re already doing that. Treat the area with stoma power or if you can get your hands on Kenalog spray do so, that stuff works great! Once you get the irritation under control (may take a few days) do the same thing with the wafer, cut the tape off of it then frame it with Hy-Tape. You’ll get a great seal doing that and the Hy-Tape is much better on your skin. Hy-Tape is also very water and sweat proof.

I have had the same issues with the wafer tape. Consider Convatec systems too, I’ve found that my skin likes their wafers better.

Question… are you using any adhesive removers or anything with alcohol in it? That is brutal on stoma area skin, it totally makes my skin turn red and it burns for days. I just use plain old soap and water in the shower to get the area clean. I also take my appliance off completely so my skin can breath for a while during the shower.

Hope this helps!

Bill,

Thanks for the tips. I'm going to look for that spray you mentioned and also try the antiperspirant trick that was mentioned. And hopefully the hy-tape will arrive soon.
I don't use the adhesive removers because, like you, I've found that it burns my skin like crazy and I don't usually need it anyway, since the wafer is in a perpetual state of barely hanging on. And I was told I shouldn't use the skin prep with the wafers I use because it can actually decrease wear time.
So hopefully these tips will help me rig up something to get me through the next 3 months or so. Surgeon appointment tomorrow to schedule surgery repair on fistula #1 and see if fistula #2 is responding to the Remicade, which I've now been on for 4 months. Keep your fingers crossed!!!
Thanks again.

Michelle,

I had the same problem. My Ostomy nurse thinks I am allergic to the tape. So I'm now on wafers without tape. My skin is finally clearing, and no weeping.

I wear a belt with them just because I don't feel as safe wearing the wafer without tape.

Michelle,

Another thing you might try is a Contreet hydrocolloid dressing with silver. It's made by Coloplast. You use it under the wafer; it sticks better to irritated, oozy skin than a wafer will. You cut a hole for your stoma in it, (using paste or strips around the hole), then stick it on your skin. You put your wafer & bag on top of the dressing.

If your problem is a yeast infection (not helped by Nystatin), the silver in the Contreet foam helps heal the skin. My ostomy nurse also recommended a longer course of Diflucan than usual. I took it twice a day for a full week.

Good luck!
Terry

Hi

You may also want to try Keraya Powder-I occasionally get iritated skin below the pouch/just under the wafer.
I work out every day and can get sweaty, plastic only keeps the sweat there.

In a pinch I put my son's baby powder-good at night when you go to bed-cools, soothes and you are not active then so heals skin, then put Keraya on in the morning.

PS-I found HY-Tape made it worse so no longer use that or other waterproof tape.
If I learned anything with this thing & on this board, no cookie-cutter approach fits all-good luck

Michelle,

Here was that post about how JasonPA set up his process, it may offer you some helpful hints. When Mark's skin was sore, he used the trick of powder, spray that Jason talks about and it helped.

http://j-pouch.org/eve/forums/a/tpc/f/5951071921/m/5071010732/p/1

Megan

Hi Michelle,

I have very sensitive skin and seem to react to almost everything.

The only thing that really helps me is actually a puffer. It's called Flovent 125 and it has a bit of a steroid in it. Basically I just spray a few puffs on my skin before i put on my wafer (a tape-free wafer, the tape really bothers my skin) and it does wonders. Its not a crean so it doesn't effect the wear time of the wafer. I try to only use it when things are really bothering me because extended use can cause a thinning of the skin (because of the steroid). You need a prescription for this so you should talk to your doctor and defintely get your ET nurse's opinion on whether this might work for your particular case.

I hope your skin is feeling better soon!

Just to add to all the replies- if nothing else works, I got this fantastic cream from Dr. Bo Shen at the Cleveland Clinic. They only make it there at the clinic, it is homemade in their pharmacy. It is used for butt burn and under flanges. The stuff is INCREDIBLE. I mean, wow. It stays on even in the shower. But they only make it there. It doesn't affect the sticking power of my flange either. They really need to market the stuff. I know this probably doesn't help since you live so far away, but if you get really desperate, perhaps there might be a way! Good luck!

Just an update. I did a lot of trial and error and have improved the situation slightly. I'm still changing the appliance every day, but I suppose there's really no way around that with my lifestyle. At least the rash is a bit better.
I use the hy-tape now which does give me a better seal. Underneath that, before I put on a new wafer, I found some benadryl spray that, once it dries, doesn't seem to affect the adherence of the wafer to my skin. Plus, I'm really making it a point to try and avoid scratching the skin, even though sometimes it's extremely hard not to do so. Alos, the spray antiperspirant was a great idea; I do that before I go work out and it seems to reduce the sweating around the area where the bag sits, which helps.
Appointment for 2nd opinion in Cleveland on May 7th and then hopefully takedown ASAP after that. We're trying to get a definitive answer on whether I have Crohn's or UC first.
Thanks for the help!

Hi Michelle,

Thanks for the update, I was wondering how you were doing. I'm glad that things have improved, albeit only slightly. Hopefullly you'll have good news about your takedown when you see the doctor at Cleveland on the 7th May. I'll be keeping everything crossed for a UC diagnosis if that's what it takes to get you your takedown scheduled.

Keep us posted.

Luv & hugs

Shell