Need help with wafer not sticking to stoma!

Delgr525,

Thank you so much for all your caring words. Very sweet of you. And I agree it is funny (not funny) that he is being like that all of a sudden, like you said they don't have to live with it so they truly don't know, do they? Maybe he would have ended up messing up or something weird would have happened. I have hope and faith that God will bring me to the right doctor out there. In the meantime, I sure am gonna try some tips and research for more. I hope you have a great rest of your night and thank you again. Sometimes kind words go a long way.

Hi Beth,

It sounds like we have been experiencing a similar problem. My loop ileostomy stoma is also flush (almost subterranean), so it is extremely difficult to get a decent seal necessitating a bag change every 24-36 hours.

I've found Salts Alo rings help keep the inflammation down, along with Dansac barrier wipes, a fine dusting of stoma powder all topped off with a thin coating of calamine lotion.

However, the problem is not going to improve. None of the stoma nurses can suggest anything other than what I'm already doing, so I will have to undergo a major operation in September to re-site the stoma. Hopefully, that will ease the almost constant pain and discomfort I am living with at the moment.

All the best, Nigel.

Yeoman,

I am so sorry you're having this same issue as I am. I know it's extremely frustrating. It sounds like we both don't have any other option but for them to fix it surgically, with nothing working for either of us. You know, I don't understand what's up with the stoma nurse. They give options (not many), but it's like they fit everyone in a box. Meaning, people having the same issues like us, they say powder, convex, and barrier ring. That's the box. And if those don't work, because we are out of that box, they don't know what to do and don't try to think of something.

So with your operation, they are switching sides? May I ask why they aren't trying to pull it out more? I will be praying for you and your operation.

I've had a couple of stoma revisions and these surgeries were much, much easier than the big ones needed to create the stomas. I was in overnight after the revisions but most people apparently can leave the same day. I've had two ileostomies: I had a temporary ileostomy on the way to an ileoanal pouch that eventually I had to give up once I was diagnosed with Crohn's, so I now have a permanent ileostomy.

Once you move, I hope you can find a good ostomy nurse or, even better, a team with lots of expertise. They will tell you when they run out of ideas, and this should matter to the surgeon if he trusts their judgment. Look for a surgeon who will listen to you as well as the stoma nurses, but it's only reasonable a surgeon will want all else to have failed before they resort to surgery. Everyone has their own expertise that is relevant, but at the same time, there's no need to expose you to unneeded surgical risk.

Good luck and hang in there! :) I have despaired when dealing with a hypermobile (not sure that was the word they used) stoma that never stopped functioning. I mean, how do you put on a flange when the darn thing never stops spewing?!? Somehow it got better eventually. Partly I learned how to deal with it, but I also had to have two stoma revisions, which helped, too. You deserve support from stoma nurses in managing your situation.

I wanted to correct my bias: Surgeons can definitely be female, too! My GI surgeon happens to be male, which led me to say "he" in my post.

K-galgery,

I am really sorry you had to go through all of that. Thank you for letting me know about the revisions. I have been curious about it and the recovery. And thank you very much. I will be hunting, that's for sure.

Hi Beth! I'm sorry to hear about your problem. I've had a permanent ileostomy for a little over 21 years now. I remember having a similar problem after my surgery. I have a flush stoma too. My skin was very sensitive, and I developed rashes. I also only use Coloplast products. Fortunately, I had an excellent wound care nurse who helped me figure out things along the way. These are some of the things I do, and while I understand that everyone is different, and some things may not work for you, I'm hoping that maybe something will be helpful.

1) Stomahesive powder really helped me with the rash and the red ring. It can still sting when applying the appliance with the paste, but it heals quickly, and by the time I had to do another application, it wasn't a problem.

2) Because you want to make sure that you're catching the leakage as soon as it occurs, a two-piece appliance makes it easier to see what is going on, than a one piece. I use the Coloplast 2 piece Assura cut-to-fit convex Extra Extended Care. It gives me more control of the shape of the hole, as my stoma can be somewhat oblong when it is at flesh level or beneath. Sometimes my stoma doesn't want to come up, even with a convex wafer, but it still helps to prevent leakage.

3) Some pastes melt too fast or are too loose? I've tried multiple pastes, and the only one that I can use is the Coloplast Stomahesive paste. I've tried the Coloplast Brava, and it has a different stiffness(?) to it. You don't need a lot of paste. Apply the paste slightly further back from the hole in the wafer because if you don't, as the paste sets on your body, it will slide through the hole and cover the stoma because the stoma is flush with the skin. I also learned to prep the wafer and let it sit for 30 minutes to an hour before applying. It helps to make sure that everything is dry, but not too dry, so that it holds its shape and won't seep beneath the hole in the wafer. It's also helpful because of #4.

4) You really don't want that wafer to be able to move or slide so that the stool can get beneath the paste. I faithfully use Adapt Hollister Medical Adhesive Spray! It was the game changer for me when the nurse suggested it. I know you say you are allergic to most products, but maybe you can look to see if there are ingredients within this product that you are not allergic to because that was the main thing the nurse suggested that helped. It is not the same thing as a skin prep spray. It is very sticky and moisture resistant. I've tried to see if I can find another product that is comparable, but I haven't found anyone who makes it but Hollister. Unfortunately, I did learn that Hollister discontinued the spray, but you can still find it online in multiple places such as Amazon, eBay, and some online medical stores. I am very upset about this, but I plan on stocking up on it until I can find something comparable. One can will last you quite a while. I spray it all over the wafer after applying the paste and let it dry.

5) I also use a skin prep, but if I'm dealing with a rash or broken skin, I use a non-sting wipe. Make sure it dries out completely before applying the appliance. Apply it right over the stomahesive powder. When my skin is healthy, I use Skin Tac Liquid Adhesive. It helps to maintain a strong bond with the medical adhesive spray. I can get a wear time of at least two weeks, but I have worn an application for as long as 6 weeks. Because I'm using a two-piece system, I only have to change the bag out once a week to every two weeks.

6) The placement of your stoma can make things complicated. Mine is right under my waistline, so the wafer is right where my skin folds are when I bend. After I place my ostomy on, I wear an ostomy belt to hold it in place until it sets completely. It helps for when the skin seeping causes the wafer to not adhere all the way. Usually, I wear it just for a day if I change it in the morning. I'll wear it overnight while I'm sleeping if I change it in the evening. I've gained pandemic weight, so I do have to wear it more, just because of my fat folds. :( It might be helpful for you to wear one all day and all night for extra security until your skin heals.

7) When I change my ostomy, I wear loose clothing and underwear. I used to wear tummy control underwear or tight pants to hold it in place, but that will cause stool to accumulate right at the wafer and seep out beneath the paste. I can still wear these things, but I make sure that the appliance is set for at least 24 hours before doing so.

8) When I did have leakage, it tended to happen more at night while I was asleep. I really had to pay attention to my bowel habits because I don't want to have too much output while I'm sleeping. Ballooning from gas made it come loose real fast. Also, while lying down, heavy stool output can accumulate right around the top of the wafer, which will break down the paste more and cause stool to sit right on the skin.

I hope something in that was helpful to you! Good luck!

Hi! I also have a stoma that's pretty flush and I'm allergic to most adhesives. This helped me and I know it sounds crazy, but it works!

My stoma nurse asked me to try the Sensura Mio two-piece system, well it gave me a terrible allergic reaction!

My stoma nurse then told me to get some Flonase and use it like a barrier on my skin before applying my wafer. I spray it into my hand and wipe it on the skin around my stoma out past where the wafer will be. Let it dry and your rash and redness will disappear by your next change.

It works! The steroid in Flonase blocks the allergic reaction of my skin, with any product. It's been a lifesaver for me.

I hope this helps you!

Hi Beth, I read your post, and the replies others have written. I'm Marsha, and I have had my ileostomy for nearly 60 years....since I was a teen of 15... That was the "olden days" as far as supplies went......reusable rubber pouches, plastic reusable wafer.....rubber covers for the wafer.....'flammable" cement (skin bond) that could burn the skin if not dry.... It wasn't easy, but I managed, coped, and thrived, and I remember the first day I used a disposable pouch.. I think I cried......it felt like nothing.. I had a perfectly placed and sized stoma, but after 2 pregnancies, and fluctuating weight, my stoma is flush with the skin.....with an indentation just below the stoma.. Perfect for "a leak".. I got sick of cutting out holes in wafers.....and switched to Convatec "Modable Wafers... Those were great for a time, but that sagging skin/pouch....really gets in the way.... I experimented with Eakin seals.....first cutting off strips...then using the whole thing.... I can go a week without needing to change.....or without warning.... have a leak in a few hours... Unpredictable.....but usually, there's a telltale itch... If you are specifically reacting to "other brands", and if you had ulcerative colitis, be aware, that although the "disease isn't active" it is an autoimmune condition....and can cause "pyoderma gangrenosum"...... which is ulcerative colitis on the skin... I had what looked like a rash/ and a blister.....the blister burst, and sprayed red blood all over my friend's bathroom (I was changing).. I was off to the emergency room of NYC hospital, and managed to see a "real" surgeon/ not a resident or intern... Over the years I've had a few bouts of it.....under the wafer, in the incision, and at an irritated spot on my waist... Instead of healing, the lesion just grew wider and deeper....I've researched it online, and have advised others about it.... Ironically, some doctors have never actually seen it, much less diagnose it... Originally, my gastro wanted me to go to a surgeon (ostensibly to have the blister "removed", but the NY surgeon told me to follow wound "healing routines. (an improvised bandage) under the wafer... and to avoid getting my almost skin-level stoma reset.... Not much room on my scarred up belly, and there's always the danger of increased infection. So I just cope with finding new ways to manage.... It's not the end of the world.. changing takes me about 15 minutes.....sometimes less, sometimes more.....and I usually do it.... early in the am, or very late at night, when I haven't eaten for a while. I set up everything I need.... and generally speaking, cleanup, and putting on the new wafer goes smoothly....except when it doesn't... Feel free to write..... and ask more questions if you need more info. Best of luck to all of you... Marsha