Skin Protection Advice for Retracted Colostomy

 

 

I'm wondering if some sort of skin protectant would help the skin around my very retracted colostomy heal? I was looking at Ostoform seal with flow assist or the Eakin cohesive? I've been using just a wipe to get off the adhesive residue and then the Safe n Simple barrier prep wipe before sticking on my convex Convatec Esteem Body device. I think the adhesive pulls off close to the opening, and then it gets irritated, especially when I walk more or twist.

I just stopped using Miralax daily; I'd cut it down to 1/4 cap, but my pancreas was so annoyed I just stopped it. I've been adding more fiber to make up for that. I'm open to your ideas, and I have contacted my doctor with this same pic. Thanks for your ideas and experience!
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G-Day Dwild,

Have you shown this to your surgeon? I have never seen a colostomy that retracted. They have to fix that and make the stoma at least 2/3 to 1 inch above the surface. Please go see the surgeon.

Regards, IGGIE

I've sent the same pic to my doctor, but as I recall, they told me part of the problem is how much fat I have in my belly that caused a problem for the surgeon. Then I had 6 rounds of chemo while dealing with the surprise colostomy because of emergency surgery, and they didn't want me to lose weight during chemo. I lost about 10 lbs, but it's come back. Now I guess I just have to eat veggies and drink water to see if I can lose weight without walking too much. Grrrrr

Hey there,

That does need to be fixed. And the doctor can do a relocation since he was having problems with that spot. As far as the skin protection goes, use a liquid skin protectant. Not these wipes you get that say they add a protective layer because they don't. It's an actual real skin protectant. There is one called Marathon and the other is Calvion 3M Advanced Skin Protectant. You will probably have to pay out of pocket for it, but that depends on your insurance. You can call your distribution company and ask if your insurance covers one of them. I posted pictures below of what they look like.

 

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Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Fat may be part of the problem, but certainly not all of the problem. That is bad placement. You will never be able to manage that much retraction. The flow assist will not work in your case — it is best for the liquid output of ileostomies. You need to see a colorectal surgeon — if a colorectal surgeon did the placement you have now, then see another.

That's like a reverse stoma. 😬 Go get it fixed by a competent surgeon. You'll never want to do anything to lose weight or just enjoy life if you don't have a stoma that works correctly.

Are you still getting leaks? Also, are you sure you aren't allergic to the adhesive? My urostomy is retracted like that, but my skin is doing fine, so there may be another problem.

I agree that you need to get a second opinion from a colorectal surgeon. That stoma really needs to be fixed. I plan to get my urostomy fixed when I can, but you will want to heal the skin while you wait.

I couldn't get you off of my mind. Until you can get your stoma raised/re-sited, you should try the Coloplast SenSura Mio Deep Convex Barrier or the Marlen UltraMax Deep Convexity Barrier — try free samples. You also need to get an ostomy support belt — Nu-Hope belts are available in sizes to fit all girths; that is, you can request a custom size.

Thank you all so much. I have reached out to my doc, so we'll see if I can get a surgeon to give me an idea if it's possible. I'm currently using an Esteem Body deep convex pouch from Convatec that has worked so far better than the others; it seems to be very similar to the SenSura Mío Deep Convex. I might try for a sample if you think it will be really better than the one I'm using now. I really thought it was doing so much better now that I'm leaking less and using the soak when I change it. Of course, the picture is AFTER soaking it for at least 15 minutes. I am wondering if a belt would help, but the last time I actually used the belt that comes with the Convatec, it left me with a bruise all around the stoma, so I was thinking it was TOO tight!

You have received some great advice here that doesn't need repeating. I just want to say I hope you get the help you need. Dealing with such a badly inverted stoma must be awful, and no one should have to accept that. All the best.

Terry

It sounds like that belt was too tight. I'm not familiar with Convatec since I never tried them. If their belt attaches to your appliance, I think a different belt style would be more helpful. I'm using a belt from myostomybag.com, but insurance didn't cover it. I've ordered one from Nu Hope that my insurance will cover. Both belts are wider with holes to pull the bag through. That distributes the support over a broader area and should help prevent bruising.

There is something about your picture that keeps me thinking allergic reaction to the adhesive. I guess it's the fact that the entire area is red; I can almost see where the baseplate sits. I'd expect leaks to be less regular. Sometimes sensitivity-type reactions can build up over time. It is worth trying a wafer on the other side of your abdomen and seeing if that skin reacts.

I could be totally off base here. I just feel for you; the skin around my drain looks like that, and it is extremely painful. My problem is caused by the drain leaking ileostomy-type fluid onto my skin. And the redness follows the leak paths rather than being as even as yours.

I think I might try that Nu Hope belt. I looked at that, and it seems that it might help. I did my walk today, and pretty much held my device the entire walk, and it seemed to make a difference. I'm also shortening my stride, and that seems to make a difference too. I like your idea of trying a device on the other side just to see if the skin reacts, as I did have an allergic reaction to the first bags they gave me, and it was pretty subtle - it was when I realized that as soon as I put the device on, my skin was itchy that I realized it was the device. My skin never got really red far from the stoma; it's just the close-up skin that gets really red with this device.

You definitely need to make sure you protect the skin, or you will have another big issue on your hands. When the skin gets overly red, raw, and weepy, nothing will stick to the skin. But I would definitely have it relocated.

Hi Dwild
I don't need to say anything regarding your inverted stoma as everyone has already spelled that out very clearly, but I was reading about your skin maybe being related to an allergy to the adhesive - my skin reacts to almost everything (not just around my stoma, but everywhere.
Earlier this year, I thought that I was getting super itchy due to the summer heat, but it turned out that I was allergic to the adhesive of my appliance.
My stoma nurse ordered me Brava Protective Sheets (10 x 10 cm); she also told me to use my asthma Flixotide (contains Fluticasone) inhaler, and after cleaning my skin, I give my skin about 5 to 7 puffs. It dries almost immediately and helps the skin heal quicker. I also use some antihistamine every day.
It helped me almost immediately.

All the best with getting your stoma fixed.

Gracie

The designs and adhesives used by the different manufacturers are different. It can be advantageous to try appliances from different manufacturers. I have three different appliances that each gave me a reliable 4 days without leaks, but I could see them begin to deteriorate on day 5 — I kept trying different appliances until I found my current one that gives me 7 - 8 days reliably. Your goal should be no leaks, not fewer leaks. Get the samples from Marlen and Coloplast to try. You should also sample the Marlen Ultraseal Barrier Ring — it swells less than any I have tried. Get the 50mm, smaller diameter one. Attach the barrier ring to the bottom of your appliance. Apply the appliance with an ostomy belt to hold it firmly in place. 😊

Don't be discouraged if some appliance configurations do not work; that's the nature of experimentation. Observe why an experiment failed and incorporate that info into your growing foundation of ostomy management knowledge. 😉

https://www.marlenmfg.com/ultramax-drainable-pouch/

https://www.marlenmfg.com/accessories/

Update: I saw the doctor yesterday and had to teach her about colostomy - not what I hoped and ended up in tears after that. I guess I expected to not have to teach the doctor, and I was hoping she would have some wisdom about my skin. She had none, and that shook me. I also think the debacle in the Oval Office had me shook too; I really never thought the US would align with Russia, but we are there. I cannot tell you how disappointed and distraught I am about our current administration, but that's another story.

Instead, I am using the wisdom I found here - the sheet that you all suggested is now on my skin underneath the device, and the difference is astonishing! I can move, and it doesn't jab at me; I can ride in the car and hit rough roads, and it doesn't jab at me. It's funny how we get used to being in pain, and our brains minimize it. Then, when the pain is gone, you realize it was bad! I'm hoping that this relief will allow my skin to heal! Thank you all. Next up, I'm going to contact NuHope about ordering one of their belts so I can walk with comfort too. I did get a referral to the wound care specialist and a surgeon, so we'll see what happens with those appointments.

Unfortunately, we all come to the point where we realize that doctors are not gods and they don't know everything or even as much as we think they should.

The beauty of a site like this is that everyone here lives this life every day. Collectively, we know more about managing a stoma than all the doctors put together. That doesn't mean you can't get good information from the right doctor or avoid doctors. But it does emphasize the need to be your own advocate.

You are well on the way there. I'm so glad the sheets helped you.

G-Day Susan,

The difference between God and a doctor is that God doesn't think he is a doctor.

Regards, IGGIE

What kind of doctor did you see? A colon and rectal surgeon would be your best bet to know anything about an ostomy system. Other types of doctors know what an ostomy is but don't know the ins and outs of the bag systems; that's why they always push an ostomy nurse on patients. But I saw you got a referral for wound care? If it's for your ostomy or pouching system and the skin, they don't do ostomy care.

Yes, the wound care people here are also the ostomy care folks. I think there is one person in wound care who specializes in ostomy care. I did get a referral to a surgeon too, but that is the system here. I have to go to a doctor to get a referral to the doctor I actually need to see. I'm just so happy that the sheet is helping me that I figure that will get me through the wait for the next appointment!

Field, yeah, that's normally how it works. You have to get a referral with an HMO, and with Medicaid, with a PPO you don't have to. Just make sure that it's not wound care you're seeing and you're seeing an ostomy nurse. Wound care doesn't know ostomies, and to be honest, ostomy nurses don't know much either; you know more than them.

I cannot say how grateful I am for the people on this site that led me to the sheet that I am now wearing under my device. I'm now on day 3 and still no pain! My daughter noticed that I am standing up straighter and my walking is better. I was really trying to make my belly not move because it hurt, and now it can move, and it doesn't hurt! Yay!!!🎉

Good for you.