Bag Failures, Blistered Skin, and White Patches on Stoma - Urgent Advice Needed!

Please, please, please, I need help/advice.

Not sure if this started because of a bad batch of bags, but today I've had bag after bag after bag fail on me. My skin is blistered and weeping, and now the bags won't stick. I've gone back to some spare bags I had left when my stoma changed size, and this bag isn't sticking either.
My stoma has white patches all over it and just inside the opening. Also, not sure if it's relevant, but I've felt off the last few days and today as well. As the bag and stoma issues, my back passage is very sore. Like I've had the biggest poop ever, but I've only got the rectal stump left...

Is it a flare causing all these issues, and dodgy bags are a coincidence? I don't know what to do or how I'm gonna manage with the bags not sticking because the more leakage that goes onto the now raw, weeping skin, the worse it's gonna get...

Please help. IBD helpline is closed...
I do have photos, but can't load them onto this site...

As you're from the UK and it's out of hours now, so you can't contact GP/stoma nurse, I would phone NHS 111 to see if they think you need to see someone or can be dealt with over the phone to put your mind at rest.

Some of the vendors for ostomy supplies have stoma nurses you can talk to.

Hi Zed! YIKES!.....you DO sound like you're in trouble. Without seeing any pics, the first thing that comes to mind when you say "stoma has white patches all over it" is a fungus/yeast infection. Fairly common, I'm told, but never had one. First choice med for such is Nystatin powder. It's prescription strength, so you'll need a doctor's order. If you were here in the States, I could overnight you some.......but we're an ocean apart. Hopefully someone on your side of the pond can shoot you some Nystatin overnight........or your local hospital should be able to figure that one out ASAP.

Now the skin thing. The bags aren't failing........your skin is failing. No bag can stick to wet weepy skin. The Nystatin should also help heal your skin, and others on here report they've found other things that heal the skin fast (Calamine lotion, etc). Unfortunately, this specific website doesn't allow "sticky" posts that stay at the top of the list with info people frequently need.......like things that help irritated skin. You really need to see an ostomy nurse. Short of that, you need to find a way to leave parts of your skin uncovered so it can heal. A company called Nu-Hope (https://www.nu-hope.com/) makes a non-adhesive barrier that's essentially an O-ring that's held on only by a belt. You can't be doing cartwheels with it on, but you wear it for a few days to give your skin a chance to heal. I don't know how quickly they can get you something.........but check them out. Call them anyway and explain your situation......they might know of a quicker solution. If I were you, I'd put up another post entitled "Need Nystatin in UK Immediately....Please Help" to get the attention of folks on here who might be close to you. Sorry I can't be of more help.

Regards,

Bob

Zed, what type of ostomy do you have?

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Are the white patches fuzzy or flat?

Slightly raised... bleeding very, very easily too.

Always refer to your stoma nurse to have eyes on it, but there are two common reasons for an ileostomy to have white colored patches.

1. Hyperkeratosis/pseudoverrucous lesions. These are small white/gray or red bumps formed in response to prolonged contact with liquid feces or urine. They bleed easily and are usually painful. Treatment is to identify a pouching solution that will support adequate drainage.

2. Lymphatic tissue may also be visible through the stoma and will appear white.

Usually, the stoma itself does not support a fungus unless you are immunocompromised. The peristomal skin...way different story!!!

Hi NWAO,

Hyperkeratosis/pseudoverrucous? Oh... so we're throwing the big words around now, eh? OK... then... supercalifragilisticexpialidociousing! Yeah, I threw the "ing" on the end just because.

Seriously... Zed, what she's saying is, are the white spots actually on the stoma, in the stoma, or on the skin around the stoma? The pic below is of a fungal infection. I couldn't find a good pic of lymphatic tissue visible through the stoma opening. Does what you have look anything like this pic? If not, do you have to look into the stoma opening to see the white spots... or are the spots on the skin around your stoma? Man, every time I look at stoma pics on the internet, I cringe. How many Dr. Frankensteins are there out there? These poor folks! Makes me want to shut up and stop complaining...

Regards,

Bob

I hope you have found the help you need.

You could try posting a post on UK IA website and see if anyone has any suggestions to help you.

No, it doesn't look like that (I do feel for that person though) for some reason I can't upload any pictures here.... The white is actually on the stoma. The parastomal skin is now peeling like sunburn....? I will try to upload a photo to my bio.

Hi, I can't post a pic currently but for me, I have the white spots. They are similar to a lesion, and mine are confirmed as my Crohn's. When my Crohn's returned after my surgery, it began terminally on my stoma. I went quite a long time before it manifested deep enough to bring on what I call my internal symptoms. I describe it as a window to my Crohn's. When I'm in a flare-up, the white spots are far more prevalent. When in remission, they are less but never truly go away. Not to be gross, but the white is the scab over the inflamed part of the bowel. They will slough off and bleed. It is kinda cool to get a bird's eye view of your disease without having to look through a scope.

I get the lesion that hurts like heck when they are forming. I know because my stoma has been bleeding today and I was suddenly having sharp pains on my stoma, and the white lesion appeared. All around the top of the stoma this time, sometimes. They are going inside, etc. I have been wondering if it was caused by an ulcerative colitis flare-up, but I do not have confirmation one way or the other. The lesions and bleeding usually last a few days, go away for a few and then come back. The lesions show up a minimum of once a week. It makes me think it could be that, but a response earlier made me question that. Is there anything special to do when it gets the lesions and bleeds a lot?

So I get white lesions that hurt, my stoma bleeds from them and often when they are not there. The first common reason makes me wonder, but I have a colostomy, not an ileostomy. However, my stoma is constantly covered in kind of a slimy clear wetness no matter what I do, so I wonder if that keeping it so wet could be the issue? I have no idea if it is normal or not.

The slimy clear wetness is completely normal.

Thanks!