Sooooo, I've been dealing with this for a while and trying all sorts of things. The latest has been the Eakins circle thingie; I forget what it's called. I tried the marathon stuff, and it didn't really help and also created a very uneven surface by coating the injured skin and not coating the uninjured skin. It also did sting for me. I tried the flow assist thing, and that helped some, but mostly I think it was the backing that helped. For me, the Eakins circle thing doesn't always stay where I put it and ends up pushing out underneath the bag. Sometimes it looks like it's going to fall down into the bag along with my waste, and some of it seems to do that. Other times it actually pushes out underneath the circle, and I need to add extra tape around the outside to keep a bag on! I was all set to do something different today when I changed it, like use the dermabond stuff again. I'd even cut a piece to go under my bag when I realized that my skin was actually looking a little bit better. So, I warmed up another Eakins ring and another bag and did the same thing again. I'm trying to take pics every time I change so I will have a record of A) skin status and B) how often I change it. Sometimes I'm changing it twice in a day; sometimes it can last 2 days. I do need to note that I am being much better about warming things up before I attach them to myself, and that seems to make a difference.
G-Day Dwild-WA,
I really think you need to go see your stoma nurse. It sounds as though you're getting a lot of it wrong, and you need to have it seen to and re-educated on how to fit your bag. I hope you're able to get this sorted out.
Regards, IGGIE
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Geekyjen,
Thanks for the reply. I will be seeing my doctor on Friday and mention Entyvio. I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared. The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade. Turns out I have been diagnosed with LUPUS. It is attacking my nervous system. I had ulcerative colitis in 1996 and they had to remove my colon. Had a J pouch for 10 years, until it started failing. I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently. I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared. I have had two hospital stays now because of the blisters and the paralyzing incident. I will be dealing with this forever now. I have just been working on acceptance.
I love this website because of wonderful people like you!
Betty
I've been unable to get in to see a stoma nurse locally, so I am going to schedule a video bag change with the Convatec nurse.
Learn more about ostomy accessories, and when to use them.
G-Day Dwild,
One thing I hope you are doing: after you remove your bag and clean all around your stoma, do you use an adhesive remover wipe to clean any adhesive left? After doing that, dry it well. Now use a barrier spray or wipe and let that dry well. It is most important that it is 100% dry. Now place the seal or washer, whichever way you call it, and now place the bag.
It is very important that your skin is 100% dry between each stage of the operation. I hope this helps.
Regards, IGGIE
G-Day Dwild-WA,
I can see from your location you are close to the Canadian border. Canada has all their products for free, unlike America, which is neglecting you guys. They also have a product made by a company called "SALTS," and all their products are infused with aloe, which is good for your skin. They also make bags as well. Do you have a friend in Canada that could help you get some of their products?
Do you have a stoma nurse at all? You said you could not see one, but you should be able to have access to one. I see you live in Washington; they must have a stoma nurse in one of the hospitals; they can't be that far behind the times. You need help, and you should be able to get it.
Sending you good vibes to keep you safe.
Regards, IGGIE
My Ostomy Journey: Jearlean | Hollister
G-Day Dwild-WA,
I can see from your location you are close to the Canadian border. Canada has all their products for free, unlike America, which is neglecting you guys. They also have a product made by a company called "SALTS," and all their products are infused with aloe, which is good for your skin. They also make bags as well. Do you have a friend in Canada that could help you get some of their products?
Do you have a stoma nurse at all? You said you could not see one, but you should be able to have access to one. I see you live in Washington; they must have a stoma nurse in one of the hospitals; they can't be that far behind the times. You need help, and you should be able to get it.
Sending you good vibes to keep you safe.
Regards, IGGIE
I so appreciate your responses and your care, and I think I'm doing it as you say. The one thing I do after I take the bag off is soak my skin with a cloth soaked in Domeboro, which seems to help it feel better. I do use the adhesive remover, and I do use the skin protectant wipes, and I do let my skin dry in between. I think the shape of my inverted stoma is an extra challenge. I do have an appointment with the physician assistant who assisted the surgeon on my revision in a few weeks. I've already seen her and her intern, who has lived with an ileostomy since he was born, knew more than she did about the nuts and bolts of the process. The one I put on yesterday seems to be doing better so far. As for a Canada connection, I will have to ask around and see if anyone can get me these things you speak of!
I hope all goes well for you. Keep us up to date as you travel this journey with us.
Regards, IGGIE
So this white part that I've circled is what I mean when I say the ring is expanding and taking over the adhesive part of my bag, and the dark part is waste that is either going over or under it. I can't tell.
Have you got another make of ring to try? All the companies that make them will send you free samples for you to try. Contact them all, and why don't you try other bags as well? I had to try lots of different systems before I decided to stay with Hollister two-piece drainable. It's all trial and error before you get the right one.
IGGIE
Learn about convexity and 4 myths surrounding it.
So you think maybe the ring is the problem? It is a thin version of an Eakin ring, but I think it's a different brand called Safe & Simple - insurance always means I get the cheapest version. I will probably change it tonight, so maybe I will try the Dermabond stuff depending on how my skin looks.
Let us know if that works, but send off for some other samples as well.
IGGIE
Well, this one lasted a little longer. I just put it on Tuesday night, but it is headed toward a leak, so I will probably change it later today. I added a strip on the outside, so I feel it will last a little longer. Plus, my output has been mostly liquid due to diet changes - I had to stop all carbs and sugar yesterday, but then the PET CT scan was rescheduled. Excess zucchini will definitely give me the runs!!! 🤣 I'm wondering if I put the fake Eakin ring really close to the stoma opening, almost over it, if that would stop it from expanding out to the adhesive part of the bag? It really does seem that the part of the bag inside the circle just does not want to stick to my skin at all.
G-Day Dwild,
I hope you're making the hole in the base about 1/8" all around larger than the stoma but not touching the stoma, and then make the seal/ring, whatever you want to call it, a nice snug fit up to the stoma but not over the stoma. And I hope you're using a convex base/wafer. But before any of the above, the area has to be 100% dry.
Regards, IGGIE
It is hard for me to actually see the size of my stoma until I take a picture, so it's a challenge. I am using a convex bag, and I made sure everything was dry before I put it on, plus I made sure it was warmed up. I put it on last night, and it seems to be holding so far, and the white part has not yet worked its way under the adhesive while output is making its way out!
Dwild, I use a mirror placed so I can see the stoma perfectly. If you can't see your stoma, then you don't know if you're cutting the base plate to the correct size or shape. How do you place things in the correct alignment if you can't see it?
Regards, IGGIE
I've been using a template from the previous one, and I do use a mirror when I place the bag. Tonight I did the same drill because the white stuff once again was swelling up and working its way under the adhesive part of the bag. My skin is rebelling no matter what I do. 😞 It sure is a relief to have it off my skin for the process, though!
G-Day Dwild,
You have to go see your surgeon and get him to extend your stoma. You can't work with it in that state. Can you take a photo of all the items you use? I have a feeling you're using something wrong.
IGGIE
Here is what I have on hand right now. When I changed it this AM after changing it last night, I finally realized that maybe my Convatec bag isn't wide enough for my current stoma. I decided to use the Hollister bag with an oval ring, and I made sure that the bag was securely attached to the ring before I put it on, so hopefully nothing will sneak between the bag and the ring. I believe that has been the problem so far; it is going under the ring. So, I didn't use the stoma powder or the two round rings or the Convatec bag. I used two adhesive remover wipes, soaked them in Domeboro, then used two skin prep wipes. I also used the Cavilon spray skin prep in hopes that it would be more effective than the wipes. Wish me luck! I thought I'd taken a pic of my stoma today, but I guess I didn't.
So I've had my ileostomy since 2010. I use an adhesive spray, a barrier ring directly around the stoma, and adhesive paste around the bag stoma opening. If my skin is irritated, I use a bit of stoma powder, but once I slap that bag on, I use the palm of my hand to press for a minute, and yes, I count to sixty. Good luck. I swap my whole contraption once a week.
Poor baby—yeah, Iggie is right that not much wants to stick to skin like that…. Back in the day, I had to leave the bag off and use sanitary pads over the stoma and pull-ups. I also used stoma powder on the irritation. It only took a few days to heal, but honestly, I didn't eat much or move around much either.
The two rings are totally different size holes. You really have to demand a visit to a stoma nurse as soon as you can. I always fit the ring directly over the stoma first after making it very dry, and it has to be a snug fit showing no skin. Now cut your wafer hole a tiny bit bigger but not touching the stoma. Now spray a little barrier spray and let it dry 100%. Now fit the wafer over the stoma and hold your hand over it so the heat of your hand helps it to seal. If using Hollister, now snap the bag onto the wafer and hold your hand over it. You should now have a nice new bag in place.
You have to go and see a stoma nurse. If you can't get an appointment, ask your local doctor to write a note demanding, not asking, but demanding you see a stoma nurse ASAP.
Regards, IGGIE
I use the Coloplast Brava moldable rings. The Eakin rings, I think they're the ones from Convatec, didn't work for me. Anything with silicone irritates my skin. I also found if I warm them up with a hairdryer just for 15 or 20 seconds, it makes it good and sticky. Also, I tried all kinds by putting it on my skin, and then the bag; it never worked. Now I attach it to the barrier first, I use a flat small lid and press it together really hard, and I never have a problem now! Also, my stoma is almost flush with my skin; I use a Coloplast medium strength convex barrier. It really helps.
I did cut the bag to fit the same shape and size of the oval barrier ring, and I made sure that the bag and the ring were completely connected first, hoping that all the output would go over the ring and into the bag. So far it's holding, but it's only been a few hours. I am reminded that the Hollister bags are kind of itchy for me, and they do not block the scent as well as the Convatec bags do. I keep checking for leaks or potential leaks, and nothing so far.
EDIT TO ADD: It is starting to fail with output going out under the adhesive instead of down into the bag. I might go with the sanitary pad and diapers!
I agree with you, Iggie. That's in pretty bad shape (pun not intended). My stoma is just slightly above my skin, and I know I wouldn't be able to have it less than that. Definitely need a trip to your surgeon.
Trying one more time with the smaller ring, both warmed up thoroughly before I put them on. Pressed them in for a minute, pressed around the ring for a minute, let's hope the carillon spray protection does its trick. Interestingly enough, the previous ring was no issue to get off, I mean I had to use the adhesive remover sheets, but it really was not too sticky.
Oh, boy, that looks sore. I'm so sorry. I have a retracted stoma and found this video very helpful. I do a couple of things differently. I don't use as much stoma powder, and I dry the area thoroughly with a hair dryer after each layer. My stoma is tiny, so I use 1/3 of an Eakin ring and manipulate it so it forms a very thin complete circle around my stoma. I've found that less is better, so try to get the bag opening as close to the source as possible. I change every other day, so when stool does get on my skin, it doesn't sit there too long. Also, I don't think you mentioned using a belt, but I think that's really important.
https://youtu.be/HhNXoqb87Dw?si=JCJCURbBQGHVjBJR
Hope this helps. Good luck!
Joan