I've been dealing with the same issues, but as Eric was experiencing, Lillie (my stoma) is shrinking down to size from its swollen state (surgery date: 11/15/22). I also try to get a longer wear time, around 4-5 days, and have been experiencing excoriated peristomal skin. I've seen some pretty gnarly images of peristomal breakdown and am very grateful that the excoriated skin is close by the stoma and not inching its way further out! Thats when the leakage gets super bad 👎 😐 Thank you so much, Eric, for creating this space for all us ostomates and for all your amazing articles and videos! You rock!! Hi Lillie, Since your surgery was pretty recent, I would personally focus on getting healthy skin rather than longer wear times. As your skin adjusts, and your stoma finally settles, you'll likely find that your wear times will be longer. Barrier rings were super helpful when I needed my skin to heal, so they could also help you. If you can get samples from a few companies, it may be worth trying. I found that on average, it took around two weeks for my skin to adjust to any new appliance/supply. Good luck! Just your friendly neighborhood ostomate. I am seven years with a miserable stoma .it has a hole underneath that blows out my seal.that. Let’s the fluid go up around the seal and soon breaks down I’ve tried many things . C oloplast Says they do nothing as it is a surgeon problem. Somedays I use as many as three setups . The little hole builds up pressure. The joint around my stoma is always very soar and bleeding . Nelson mills Hi All, I have tried “crusting”. I have tried barrier rings. I have tried everything I can think of but I cannot get my skin to heal. I have about 3 inch of incredibly raw skin all around my stoma. Nothing will stick to the raw skin and the output is burning it bigger and bigger every day. I have been bed ridden with the pain for 3 days now and I’m slowly losing it lol. Help! Hi Jayda, Welcome to the forum. That sounds incredibly painful 😖. Getting the skin to heal the first thing is stopping the output getting on it. Do you have access to a stoma nurse. Are you measuring the stoma to get a good appliance fit. Could it be a reaction to the product you are using. Leaving the bag of for a bit can really help the skin to breathe and heal. There a barrier sheets to put on the skin to form a base for the wafer. Keep heart, skin around the stoma is easy to damage but given a chance quick to heal 👍 ileostomy 31st August 1994 for Crohns Hi Jayda, welcome there is something called domboro. We get it in our pharmacy. It’s a box that contains several packets of domboro. You take a packet and put into a bowl/ cup and add the water required as it states on the instructions. Stir it up real good. Then you saturate a soft gauze pad or even a paper towels and wrap it around the stoma in the area that is affected. You can let it sit there for 10-15 minutes and it you can keep applying new ones until your mixture has run out. My stoma nurse gave me this remedy a few years ago. It works wonders and is so soothing to the affected area. Thank you for this tip! I'm headed straight to the pharmacy to try this.... I pray it works! My momos skin is raw at this point and the barrier is not staying on. Good luck, Carlene! Just your friendly neighborhood ostomate. Hello, Do you have any suggestions for products or routine changes that could help? That sounds awful 😔 I have a problem with adhesives blistering my skin. Have you tried coating the skin with calamine and letting it dry before sticking the wafer on? I got a steroid inhaler I spray on before the calamine as well. Together this seems to be helpful for me. I'm sure others will have some great suggestions for you. @Jenny ... Welcome to VO! I'm so sorry for all your going thru. I have short gut syndrome (SGS) as well & had 7 bowel surgeries before my ileostomy in less then 6 months & then later an ileostomy due to bowel blockages. Now its all about scar tissue. Our diagnoses are different but I do understand how difficult controling foods verses output & struggling through *some* challenges verses what your dealing with! Have you read the entry above by Chelly, May 07, 2023 in reply to Jayda? She has suggested a product, Domboro, I wish I'd known about when I first stumbled on VO!!! I just can't imagine your skin challenges but maybe that product may help. When I had my raw bleeding skin I resorted to using my eczema cream, not a greasey ointment, under my wafer & then stoma powder but I did find it feeling granular on my raw skin which hurt like hadies! My adhesive allergy is simply to plastic tape but I can use that paper'ish tape no issues & thank Heaven no allergies with wafers & pouch tapes. My heart goes out to you 1000%!! Stay as strong as you can. Linda Hi Jenny, Welcome to the forum. Have you tried a protective barrier sheet underneath your wafer. Plus are you getting a good fit around the stoma ie measuring well. Getting the skin dry before any base or wafer is important. Wrapping the stoma in gauze to keep moisture off. Plus is your stoma flush or have a spout. I admire your determination 👍 and you will get this 🙏 ileostomy 31st August 1994 for Crohns Hi Jenny, and welcome. Might you be able to give your skin an occasional opportunity to “rest” and dry out without the pouch and wafer? I believe that Eric wrote about that (I can’t find the posting just now), used a cloth to catch the output. I pictured him reclining on his couch with a good book or tv program whilst caring for his skin in this way. LL Colostomy 4/30/18. Hello, Hi Kailee, Welcome to the forum. Skin around the stoma should be similar to any where on the body. But that’s in a very perfect world. Have you been using any belts or supports that is putting on to much pressure. If it’s moisture from the stoma while changing try wrapping some gauze around the stoma. Sorry for all the questions but also have you showed this to a stoma nurse. Too many products can sometimes add to the problem. ileostomy 31st August 1994 for Crohns Welcome Kailee! I'm a newbie ostomate myself, so many others with a wealth of experience here... But I'll second @john68 suggestion to try a belt, if you haven't already. I did find a huge improvement in my skin (due to fewer leaks) after I started wearing a belt. I try really hard to get a good fit, and I do use a ring under the wafer to help achieve that. Thank you! I have not been using any sort of support or belt. I also saw a stoma nurse several times as at first the skin was irritated due to leakage. Last time, I showed her the gray skin but she said that "it looked fine." She shared a link with me to self diagnose and that is where I found out that the gray/white skin around the stoma indicated too much moisture. When I change the barrier, which is now every 3-4 days, I shower with everything off and let the skin breathe afterward for about 30 minutes. Should I try leaving everything off for longer to help the gray skin? Kailee, just wondering if you use a flat or convex flange. If your stoma protrudes an inch or more, you are probably fine with a flat flange, but if it doesn’t protrude, even if only on one side, you might have leaks with a flat flange. If that’s the case, you might be better with a light convex flange. Just a thought. Laurie Just a semicolon Hey Laurie, Thanks for the advice! I use a flat flange.
So far, I use the "crusting" technique and also use a barrier ring over the crusting. I'm wondering if I should just try the barrier ring like Eric said and see if that helps better than both. 🤔 I've also been in between samples of systems, so this is an experimental phase of system application.
~ Crohn's Disease ¦ Ileostomy ~
may be time to go back to the surgeon. You might want to think about having that one taken down and a new one created. Your surgeon would best to know if that is possible for you.
It surely does not sound one bit fun. Do you think if you put a 4x4 barrier on your skin before applying the pouch would help?
I keep some in hand at all times so that it’s there should something occur.
~ Crohn's Disease ¦ Ileostomy ~
I'm reaching out to hopefully widen my advice/resource circle. I've worked closely with the ostomy nurses and care team through the hospital as well as contacting UOAA for support and advice. They have each tried to help, but I am still having a really difficult time.
I've had 9 resection surgeries and 3 previous ileostomies along with several other surgeries related to my very active Crohn's disease.
With my last surgery they did a 4th ileostomy. The plan was to reverse after 6 months. Unfortunately per the surgeon and my GI, a reversal will not be possible.
I now have short gut syndrome and am totally reliant on TPN. I have to run Both TPN and IV fluids 24/7.
My ileostomy was placed as close to the duodenum as possible. The result is I have an extremely high output that is completely liquid.
To keep things interesting, I also happen to have an allergy to adhesives. If I put on a bandaid, it looks like my skin has a sunburn in about 3 minutes.
The result of these things combined is breakdown of the skin not just around the stoma, but any area the wafer is touching. The skin bleeds and weeps fluid so getting anything to stick is a real challenge.
I have a lot of leakage and often have to swap out wafers several times a day.
I'm using multiple types of barrier films each time I do a change. I've also tried using medical glue as a barrier but had limited success.
When I can't stand the pain of trying to get a new wafer on, I end up sitting in my shower on my chair for hours and rinsing off as needed rather than try and get something to stick.
I'm not going to let this beat me and I appreciate your time in giving it any thought.
I love the smell of coffee in the morning. It smells like .... victory.
My skin seems to be gray around the stoma which indicates I have damp skin. Should I use a powder and then the barrier ring? Or just try the barrier ring? Any insight is helpful.
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