Skin Protectant for Ostomy Irritation: My Lifesaver Experience

Replies
14
Views
414
kodykeys26
May 15, 2024 4:14 pm

If anyone is having trouble with skin irritation and breakdown with their ostomy, this is absolutely a lifesaver. I had severe skin breakdown over an 8-year period because my hospital stoma nurse never told me I needed to keep seeing a stoma nurse and never told me I needed to get my stoma remeasured after swelling went down. I wore a 1-1/2 inch wafer hole for 8 years and thought it was normal. I went and saw my gastroenterologist, and he immediately made me an emergency appointment with the stoma nurse he works with. My new stoma size is a 22mm hole. The stoma nurse prescribed me Marathon, and it got the irritation under control within a week. Just make sure you clean it really well and dry it well, and don't use any powder, barrier spray, or wipe, or the Marathon won't stick because it sticks directly to your skin only. You need a prescription for it because it's potent, but it's 5x thicker than regular barrier spray, and each application lasts 2-3 days. Just break the vial like a glow stick, apply with the applicator, and let it dry before putting your seal and bag on. Hope this helps.

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warrior
May 15, 2024 6:21 pm

That's awesome news. Thank you. Welcome to the community. I am sorry you had a rough time at 14 with your stoma nurse. You're doing well now, it seems. Did you have IBD? What was the reason for the bag at 14?

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Andrew82
May 15, 2024 8:56 pm

Interesting! I may have to give that a try!

w30bob
May 15, 2024 11:16 pm

Hi Kod,

Marathon is interesting stuff. Essentially purple Krazy Glue in a tube! It didn't work for my skin irritation, but it's worth a try for anyone having issues. You don't need a prescription for it; I've always bought it online. eBay is usually the cheapest. I think I have tons of it if someone wants to try it; just let me know. The one thing that bothered me is that once you break open a vial, you either have to use it all or it just dries up and goes bad. So if you just need a little more than one vial, you have to break open a second one and waste most of it. But the color is cool!

;O)

kodykeys26
May 16, 2024 3:15 am
Reply to w30bob

Oh, didn't know you didn't need a prescription to buy it online. I had to have a prescription to get it through my ostomy supply provider and checked with a few other pharmacies and medical supply stores, and they said I needed one. My ostomy nurse has to write for a bulk prescription for it every month because my stoma is inverted and I have major skin irritation. I will definitely check online; it could possibly differ from state to state. Thanks for the tip.

 
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kodykeys26
May 16, 2024 3:25 am
Reply to warrior

I originally went to the hospital because I had a blood clot, and they gave me the blood clot diagnosis (DVT) along with anemia. They just happened to see blood when I went to the restroom and did multiple tests. I have FAP, familial adenomatous polyposis. It's a genetic colon disease that happened to be passed down from my grandmother and mom. So my mom had her gastroenterologist come in and do the surgery, and he found I was beginning to develop colon cancer, but it wasn't cancer yet, just starting to form. I only have 2-4 inches of my whole colon. He's been my surgeon since the beginning. He has 48+ years of being a gastro surgeon. My stoma is inverted, so it's beneath skin level, and I have a hard time with skin breakdown. So I try whatever I can to keep the skin as normal as it can be.

warrior
May 16, 2024 8:40 am
Reply to kodykeys26

Yes, DVT, same here. I was plagued with it in lungs and legs. About as near death as I could imagine being unable to breathe.

I found out later UC patients are prone to DVT. Who knew?

I am sorry to hear of being predisposed to that colon disease. Damn. That sucks.

Having a doctor, the same doctor or surgeon for a long time, works both ways or not.

My long-time doctor was eventually killing me. Another doctor put me on prednisone, where I cannot get off it today. That's a no-no.

Prednisone is not meant for long term.

If you feel comfortable with your doctor and his advice, keep him. Just know times, meds, and procedures are all changing these days.

You have a group of people—a community here—that is the voice of reason. I hope you stick around. Take advantage of it.

My thought on that inverted stoma is perhaps you can get a revision. Get it to stick out more? Is that even possible? Some here have had that revision. Game changer, no brainer for sure.

You mentioned still having a colon. I'm guessing with the risk of cancer on the horizon, you may have everything removed and sewn up down there? A Barbie butt?

Wishing you the best. Keep your chin up. Keep what matters in sight.

ron in mich
May 16, 2024 12:23 pm

Hi Kody, I don't understand how your surgeon gave you a stoma that's below skin level and causing problems for you.

kodykeys26
May 16, 2024 1:20 pm
Reply to warrior

I'm comfortable with my surgeon. My mom has had him since she was 15; she is now 52. He is like a grandpa almost to me. The revision surgery would probably not work. It was a touch-and-go procedure already. It was only supposed to be a 4-6 hour surgery, and it turned into 12 hours because I was bleeding a lot and had to have 7 blood transfusions. It took me about 3 years to fully recover. I lost all my hair and lost a lot of weight. At the start, I was 211 lbs, and in 2-3 months, I was down to 90 lbs because I couldn't keep anything I ate down. I am partially closed down below because I had baseball-sized polyps prolapsing, and he had to put it back to a normal size. There was more scar tissue in healing that he didn't think would happen, so I had to have multiple procedures to try to help that, and it didn't really work. I had over 3,000 polyps in my intestines, so he had to stretch my intestines a lot just to get the few inches he did. I had an appointment with my surgeon a few months ago, and he said he can't promise me anything, but I might be able to get it reversed. It would be a while before he could know for sure. Before, he said my stoma would more than likely be permanent, so I am hoping that somehow this almost 9 years of waiting to see will work in my favor. I actually have an appointment with him next month because I am dealing with an issue of granulomas right now, unfortunately. He had to cut and burn the last one, which is one of the reasons I went to see him other than the major irritation. He knows I don't like sharp objects or needles, so he has me lay flat so I can't see and doesn't tell me when he is doing things. But I trust him and know he wouldn't do anything as long as I'm either numbed or put to sleep. I'm fine with whatever he needs to do lol.

warrior
May 16, 2024 3:42 pm
Reply to kodykeys26

I am glad you are happy with your surgeon. That's really important. Trust. Being comfortable. Let's hope he doesn't retire any time soon.

You mentioned your stoma is inverted, below the skin. Do you know why this is? Is there a possibility it can be pulled out more or relocated for more comfort? That just seems so horrible to deal with.

kodykeys26
May 16, 2024 5:31 pm
Reply to ron in mich

I have a genetic disease that I got from my grandmother and mother called FAP (familial adenomatous polyposis). It causes lots of polyps to form and can lead to cancer if not treated or not treated soon enough. My surgeon had to stretch my intestines so much he said it was almost to the breaking and tearing point. I had over 3,000 polyps he had to remove, so he just went ahead and removed all my colon except 2-4 inches of it so he could form an ileostomy. I also have a J-pouch he made with the same intestines that are left. Due to me not having a lot of intestines left, he couldn't make the stoma protrude out of the stomach like a normal stoma should, so because of that, I have skin irritation and breakdown because my waste gets on my skin and because of the acidity of it, it breaks the skin down very fast. I have to change my ostomy bag every other day, and the max is 2 days. If my stoma was protruding more out of my stomach, it wouldn't be causing issues because it would not be getting under my ostomy barrier. Instead, it would be going directly in the bag, but for me, it's going under the ostomy barrier and makes the seal and adhesive melt, so constant bag changes are needed to keep it somewhat okay and normal.

kodykeys26
May 16, 2024 5:39 pm
Reply to warrior

Since he was only able to save 2-4 inches of my intestines, he didn't have a lot to be able to put on the outside where the stoma is sticking out more. I also have a J pouch he made with whatever amount of those 2-4 inches he could do. Between that and the actual stoma, I couldn't get it to protrude more. He does realize, of course, that since I have a hard time with my stoma skin and it gets irritated frequently and easily, he makes sure to help adjust and recommend if I need to make any changes to my stoma bag change routine and gives me whatever prescriptions he thinks I need and whatever medication I talk with him about that I think would help and he thinks it would be good too. From what I know, he doesn't plan to retire for the foreseeable future, but he has already said he already has his best doctor that is a part of the team he made for his offices that he would pass me on to when he does. But of course, I'm trying to see if he can, in fact, reverse my ostomy before he does end up retiring.

warrior
May 16, 2024 6:33 pm
Reply to kodykeys26

Wow. I'm so sorry. I won't ask more questions. It can wear you out answering so many people so many times. But we are a curious bunch of people. We hear some stories and ask way too many questions. It can turn a person away, but it's all in good effort to know you and your story. Some of us are quite unique.

You do have a good understanding of your situation.

I am surprised you had a J-pouch too.

So you are still hoping for a reversal?

kodykeys26
May 16, 2024 8:11 pm
Reply to warrior

No, you are absolutely fine. I like to help educate people with or without a stoma. To be honest, I'm surprised myself how many people have no clue what an ostomy is. My uncle had to have a stoma, and my aunt actually came to me and asked me a few things about it because it was really new to both of them. And I thought having a j-pouch and ostomy together was normal until a few months ago. I did more research and found out usually people have a stoma or a j-pouch, not usually both. And the first 2 years after the surgery, my surgeon said it basically wasn't going to be able to be reversed. I've always been optimistic about it because technology and medicine are always improving and becoming better. I guess I've been sort of manifesting being able to get my ostomy reversed. So when I went and saw my surgeon again, he checked things and said things have changed. He wasn't going to promise me he could reverse it, but he said it was a possibility. It would take some time to see if he really could. And well, I rather have a "maybe" and be positive about it rather than a "no" and be negative. I like to say nothing is impossible, just difficult or complicated. It's been my way of thinking for a few years now.

Jayne
May 17, 2024 11:12 pm

Very interesting interchange - thank you everyone for sharing

 

BW

 

Jayne