Terrible peristomal skin problem not being cared for by doctors

do you know what type of appliance she's using? If her stoma is flush with the skin she will need a convex application which will push the stoma out when applied. There are prescription powders that can be applied to the skin to help heal. I've used Nystatin. Is the raw skin due to leaks with the bag or the adhesive of the appliance itself?

Which part of the UK is she from? If she can get to the south east, then St. Marks and John Radcliffe have good reputations for IBD surgery. I would even recommend my hospital. Certainly my two stoma nurses were excellent, but that said, I did have a pretty easy to manage stoma. It's hard to tell, but I don't think either of them would be the sort to give up on a person though.

blksteeda, as far as I know her nurses have tried every brand of appliance, they even ordered one they hadn't heard of before...as a colostomate I've only had moderate skin irritation from output (I'm allergic to most wafers though, not fun...) so I can only imagine the pain and discomfort...that's why I really want to help her get some relief...
NiceCupOfTea, that actually sounds great, she's in Essex so she will hopefully be able to get to the hospital you mention! Isn't it just unbelievable that people are being left to exist like this? (exist because she certainly isn't living...and she has 4 children...it's appalling!)
Thank you both for your replies, they are most appreciated :)

vlogostomy said...
Hi, thanks for the reply...
She does already use a convex appliance, in fact the pouch only stays on because of the belt. I use a convex pouch myself but any leaks I have aren't as bad as I'm a colostomate, to be honest I've never really found the convexity does much to remedy my retracted stoma though. Her skin is so bad due to output leaking and eating away at it, it looks awful and is really painful.
I've recommended zinc oxide powder which will help to absorb the moisture, it's just really out of order that her medical care team have given up on her...

I have similar issue with flush stoma and I also used a convex appliance with a belt and had significant skin issues. It turned out it wasn't the leaking that was causing my issue, but pressure from the belt. With the convex appliance and the belt pressing against it was creating pressure ulcers. It just looked like the skin was being eaten because there was always a leak there since the skin was weeping.

I switched to a flat wafer for a week, applied iodosorb to the affected area, and changed the appliance daily (since without convexity I had significant leakage) until the skin was healed. I no longer wear a belt and do not have problems.

I do still wear a convex appliance and use a Hollister adapt barrier ring. I use 1/3 of the ring each change and roll it into a long circular roll and apply it to the appliance slightly larger than the opening, about 1/8 of an inch, this seems to allow the ring to expand flush against the stoma without getting any moisture from the stoma to prevent initial sticking.

Good luck to your friend.

Hi,

I have a peristomal skin wound which does not seem to be healing. As my stoma aperture starts below the skin at about south west I am expecting to always have a problem. However I started applying a small layer of Manuka honey on the wound yesterday and just overnight I can already see a difference. I am hoping it continues to work as the wound is extremely painful and bleeds easily. I use Dansac deep hard convex bags and Hollister deep convex barrier rings. I also use 3M Cavilon barrier wipes. To help with adhesion I use a little Hollister stoma powder too.

I will update as I see any more changes.

Cheers
Richard

(Seashell) said...
For anyone with severely excoriated skin due to exposure to urine and/or feces the absolute best product is called "Marathon Liquid Skin Protectant."

Marathon is simply a-m-a-z-i-n-g. It is specifically formulated to treat skin excoriated by stoma output. Marathon Liquid Skin Protectant is unique, I have not seen anything close to is clinical healing properties.

Marathon is fairly expensive - about $65 for five one-ounce viles. But it is worth every penny. Available from Edgepark and Amazon.com and most medical supply companies that stock advanced wound care products.

Keep Marathon Liquid Skin Protectant in mind should you ever have a case of parastomal skin erosion that is refractory to healing.
- Karen -

Hi Karen

Thanks for the tip about the Marathon Liquid Skin. I received it today from the US, and it says not to apply to bleeding or open wound. Does that apply to the excoriated skin under the stoma? Mine is bleeding and open so have I wasted my time with this? I wanted to check it is safe to apply before I do.

Best Regards

Richard

Hi again,

For the record the Marathon Liquid Skin was ineffective. As I had no reply from Seashell I went ahead and used it anyway. It sealed the area but as my stoma aperture is below the fold of the affected area, I couldn't get an effective seal. As such my output still got onto the excoriated skin.

I am seeing my STN this week for more advice, but I think I need to lose some belly to make the stoma sit more flush. As I was quite ill before the surgery, my stoma was probably manageable with the waistline that I had at the time. Without my previously restrictive diet to control my weight, I have gained a few kilograms and consequently, my belly is not the same size to suit my stoma.

I now have to go back to a restricted diet, possibly not as bad as before because my JPouch isn't connected. This will be a weight control diet, with the distinct intention of getting the belly around the stoma so that there is either no fold or a much smaller fold, and my stoma will sit flusher.

Such a simple solution... I was so carried away eating foods I haven't been able to touch for so long that I didn't notice my spare tyre getting bigger!

Here we go ....