Skin sleuthing

No more itchy-scratchy. I recently healed a rash under my wafer that had been plaguing me for about four months. In the process, I discovered that figuring out the cause and solution to ostomy skin problems can take some serious detective work. Solving my stubborn case involved some help from my stoma nurse, medication, a wacky new wafer method, and a touch of inspiration from a childhood memory.

I grew up with two brothers, and sometimes we would get into spats. When these unfortunate events happened, I could handle hair pulling, pinching, being kicked and even getting spit at. However, there was one method of sibling warfare that I absolutely dreaded: the snake bite. This involved having my forearm gripped with two hands while the skin was twisted in opposite directions at the same time until a painful sting ensued. A well-executed snake bite would leave my arm red and throbbing.

On several occasions since getting my ostomy surgery, I was certain that my wafers were giving me snake bites.

When I was healing up from surgery and researching ostomy appliances and sports, I read that some people have trouble with their wafers sticking in warm weather due to sweating. As I got back into outdoor activities, I fully expected that this would be the main wafer issue I would have to deal with when doing active sports. However, this ended up not being the case at all; my wafers adhered well through any activity. Instead, I was faced with an entirely different problem related to my ostomy appliance and strenuous sports.

When I was hanging out at home in the months after surgery, I had absolutely no issues with my wafers causing any skin issues. However, once I healed up I started biking and hiking, it seemed like my wafer would get pulled in one direction as I moved, while the skin underneath wanted to move in another. The Coloplast wafers I wore for the initial months after surgery were made out of a fairly non-pliable plastic, and would leave a circle of painful blisters on my skin right around the outer edge of  the wafer from this tension. I decided to experiment with a different brand.

I tried Hollister and then Convatec and found that the Convatec ones seemed to move the best with my body contours and movements. I had no further skin issues with my wafers for the first 10 months when I was mainly hiking, snowboarding and biking. Then in January, I started to do activities with more extreme movements, like yoga and climbing, on a weekly basis. All of a sudden, my wafers felt like they were giving me snake bites again–especially near my hip bone.

I have a narrow body, but my stoma measures 1.5 inches at its widest spot. This forces me to use larger sized wafers. When I put a wafer on, it extends past my midline incision scar on one side, and over my hip bone on the other. As I would do high steps while climbing, and twists and bends in yoga, my wafer would pull at my skin at the top of my belly and also near my hip bone. At first I tried protecting my skin with various brands of skin prep, but none made any difference. I tried to stand up while putting on my wafers and made sure I wasn’t pulling the tape part too tight while placing it on my skin. Neither of these things helped. As I was experimenting, I soon realized I had a bigger problem: a very itchy rash began to develop under the tape in the location where my skin had been pulled. Over a matter of weeks, the rash spread to other areas under the hip-bone-side of my wafer.

It was time to seek some help from my stoma nurse. After hearing about my symptoms, she felt it could be a yeast infection and recommended anti-fungal powder. I tried this for three weeks with no improvement.

In the meantime, I started to wonder if perhaps I had developed an allergic reaction to the tape part of my wafers. I really hoped this wasn’t the case. I didn’t want to have to change my ostomy system. I loved the way my wafers stuck so well through sports and swimming, and all my hernia belts and pouch covers were designed to work with my system. I thought an allergy was unlikely though, since there was no rash under the entire left-hand side of the wafer. If I had an allergy to the tape, I assumed it would show up under the entire tape part. Just to rule it out though,  I decided to try Convatec’s tapeless wafers for a couple of weeks. My skin did not clear up and continued to get worse.

It was around this time that I recalled another memory. Several years ago, long before my ostomy surgery, I had a nasty, itchy rash that started on my knee and soon spread to my arms and legs. I went to a dermatologist and was diagnosed with bacterial folliculitis. The doctor felt that I had probably nicked my leg shaving and had some hair follicles get infected which eventually spread to follicles on other areas of my body. It took a while, but it finally cleared up with antibiotics.

The rash I was dealing with under my wafer looked exactly like that rash. To top it off, I now had a little area of rash on my stomach far away from my wafer. My stoma nurse recommended that I talk to my doctor to get a prescription for antibiotics. My doctor agreed that it looked like folliculitis, and I began to take Keflex. Within a week of starting the antibiotics, the rash that I had been dealing with for several months completely disappeared. Finally the mystery had been solved! I deduced that the pulling of my skin under the tape had damaged it and allowed a bacterial infection to set in. Without the Keflex, I am positive my rash would not have gone away.

The problem was, I soon felt the familiar sting of my skin being pulled under the tape when I would bend. I knew I had to change the way I was doing things, or my skin would be damaged again and the whole cycle would start over.

To attempt to solve the problem, I tried something a bit unusual. I continued to use my regular Convatec wafers, but cut off all the tape on the right half. The inner circle of Durahesive material seemed to stick just fine without the tape part, but I reinforced it with little strips of 3M Medipore tape in a few strategic spots for added confidence. My skin has always liked Medipore tape, and it is very stretchy so the strips did not place tension on my skin. When I was done, my new tape and wafer method looked a bit like the sun with rays of tape sticking out.  I nicknamed it the “sunburst method.” I have now been using this method for two months and it has been working great. My skin is super happy with no more tape snake-bites and no more rash! It has held on perfectly through rock climbing, running a 10k, swimming, and even a recent three-day backpacking trip in warm weather.

This photo shows my new “sunburst method” for attaching my wafer. I trim the manufacturer’s tape away on the hip bone side of my wafer and replace it with strips of 3M Medipore tape. You can see the shine mark where my hip bone is. This new taping system completely avoids this area and my skin is no longer irritated under tape when I climb, do yoga or take part in other sports with a lot of stretching and bending movements.
Two months after starting this new taping method and my skin is still healed and happy. Unfortunately, I never took a photo of the rash. Picture hundreds of tiny red raised bumps under where the wafer tape would have been on the left side and you will get the idea.

From eating to product selection to skin care–when you first get an ostomy, everyone tells you that your situation is going to be unique and that you will have to experiment to figure out what works for you. I am only now beginning to realize how unbelievably true this. I wouldn’t be surprised if my sunburst-wafer method was a disaster for someone else even though it worked for me. The point is, make sure to try different things. Don’t settle for supplies and methods that aren’t working well for your individual needs. Keep sleuthing and find the solutions that make living with your one-of-a-kind body and ostomy comfortable.

When I was a kid I didn’t like snake bites, but I did like Nancy Drew books. Nancy would just finish solving some tough case when a new and interesting one would come her way. I have felt a bit like her lately. Now that I have solved the mystery of the itchy rash, what case is next? Last weekend while changing my appliance on the backpacking trip I just mentioned, I noticed a 1/4″ white ulcer-like depression on the side of my stoma about 1/2″ from its base. It looks just like a canker sore. My surgeon and stoma nurse both think it is trauma related, so I am experimenting with cutting my wafer differently to see if it helps. Hmmm–s0 far I haven’t noticed much of a change, but maybe if I try…..

Let the sleuthing fun begin!

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34 thoughts on “Skin sleuthing

  1. Thanks for asking. My surgeon and stoma nurse were right. It was some sort of trauma and it is healing up and getting smaller and smaller. Just a dot now. I still am not sure how it happened. It didn’t seem like cutting my wafer differently really did anything. The sore was a 1/2 inch up from the base of my stoma… not really near the edge I cut in my wafer. Maybe I somehow nicked it during a change. Such a relief to have the skin on and around my stoma doing wonderfully again. My sunburst method is working brilliantly and is so comfortable. Even stayed on fine during a pool party last weekend.

    1. That is great, I love this blog and am inching closer to a surgery decision. Your pictures and words really help. My surgeon says to go with the pouch and I have a lot of confidence in her abilities,but although I am not as active as you, I was veering towards the bag for similar reasons. she says I can always revert back if pouch doesn,t work.

      1. I am glad you are closer to making your decision. I remember that it felt very good to finally come to peace with my choice to go for the surgery I wanted and to have a plan. My GI doctor encouraged me to go for the j-pouch, but I was never really interested in it. I found it to be a very personal decision that was hard to justify to others… I just knew in my heart that the permanent ileostomy was what I wanted to go for. I didn’t want to go through multiple surgeries and deal with all the missed work, healing time and possible complications, and then if the pouch failed, go through yet another surgery. If I would have been really interested in the j-pouch, I would have never let those things stop me. However, since I wasn’t, I didn’t want to put myself through all that just because someone else thought I should try it. I wanted to get my ostomy, become very good at managing it and move on with life after my horrible UC ordeal. I was always relieved that my surgeon put no pressure on me either way and encouraged me to make the decision that I thought was best for me. I couldn’t be happier with how everything turned out in my case, but you really have to go with what jives most with your values and lifestyle. Good luck with whatever you decide!

        Cheers,
        Heidi

  2. Heidi,

    As you mention rash around the stoma skln I just want to put my problem here to see if anyone has any ideas. I am using Hollister moldable wafers and the first couple of weeks were fine but then my skin started to break out. I used stoma powder and it helped a little but recently I have been having leaks and that is causing skin to irritate and break. Last night I am not sure how but the wafer leaked and by the time I woke up I have a thick layer of ouput below wafer and the wafer is just about to come off. I am scared to see such accidents without knowing the root cause. I am new to ostomy, I just had my surgery 6 weeks back and haven’t tried any other products. Does anyone have any ideas on how I should be dealing with my problem. Any ideas will be greatly appreciated.

    Thanks
    Bhavana

  3. Hi Bhavana,

    Thanks for the good question. I hope some readers chime in with suggestions.

    I am not sure if you have an ileostomy or a colostomy. Many of the ileostomates at my monthly ostomy meetings have tried the Hollister moldable wafers and have found them to break down too quickly for use with an ileostomy. The stoma nurses that come to our meetings have also confirmed this and have said that they are usually better for use with a colostomy. If you like moldables, you may want to give Convatec’s moldable wafers a try. I have been unable to use this product because my stoma is an oblong oval and I fall right between sizes, but I have heard they work well for a lot of people who have ileostomies or colostomies.

    Other than that, I would recommend calling for samples of different products from all the manufacturers. One product I swear by that has solved most of my skin issues are Eakin Cohesive Seals. These seals are putty-like rings that stretch, go over your stoma, and adhere to your peristomal skin. You then place your wafer on top of the ring. The ring swells up around the stoma and protects your skin while also preventing leaks.

    If you already have a sore forming from the output touching your skin, you can put a small amount of stoma powder over it. Over the powder, dab on some skin prep like Cavillon, Smith and Nephew or Trio Silesse so that the powder stays in place. Do a couple more layers of this, ending with the skin prep (this method is called “crusting”). If you use powder without skin prep over it, the powder will prevent your appliance from sticking. When you are done crusting over the wound with the powder and prep, you can put an Eakin Seal over all of it followed by your wafer. Perhaps you have already tried the stoma powder part, but if you combine it with an Eakin Seal, it may help. Eakin Seals can go under any wafer including cut-to-fit ones or moldables. Hollister makes a similar product called an Adapt Ring, but I have had better luck with Convatec’s Eakin Seals.

    Six weeks is still very early and there is such a large learning curve to managing an ostomy. Hang in there. You will find what works out for you with trial and error. I would also recommend visiting with a stoma nurse if you can. Every time I have had a skin issue, they have been very helpful in solving it.

    -Heidi

  4. Man, am I familiar with the snake bite! Unfortunately my WOCN was a total washout (she told me the paste was for making the wafers adhere!). Weeks after surgery I had a raw, hideous mess and I had to heal with weeks of crusting. I have an ileostomy.

    The good folks at Convatec were my biggest help. Rachel, my Convatec nurse, suggested the Stomahesive, which is like a thick smooth silicon. It’s a 4×4 square and I trim the edges so it makes a circle like Heidi’s. I windowpane mine with pink zinc Hy-tape for security and waterproofing. I also SWEAR BY Eakin seals! They eliminate the need to cut the hole in the wafer so precisely, since the seal (put on just as Heidi illustrates) makes a gasket seal around the stoma. I am nearly leak free with my two piece Naturas, which are a lot like Heidi’s.

    However, sometimes the “tupperware ring” bothers me. I mentioned this Rachel, who sent me the new Convatec Esteem one-piece drainable (416719 in the catalog) which is cut to fit and has a soft, silky, thin wafer – no hard ring, almost like wearing nothing. I use the Eakin seal with it as well although I flatten it a bit more. You have to be careful to smooth the seal, because if it “ruffles” it will sometimes create a channel for leakage. I alternate these two pouches and my skin is perfect. The two-piece Natura is my faithful standby if I’m eating something that may cause a problem, and my Esteem is my “leisure suit”, I back it up with 1/2 ” Hy tape, but I am going to try the Medipore. Eakin seals were my best discovery. You will not know how you got along without them.

    They’re great for blisters on your heels too!

    My drainage is so dry and heavy and I am so OCD that I use water to help drain my pouch – I actually had a kitchen sprayer installed in my bathroom. My WOCN nurse said it couldn’t be done, but I didn’t know any better and I’ve been rinsing out my pouches while they are on me since I had my ostomy, and using the Eakin seal, I have had no problem. I rinse and drain until I am comfortable and no water has ever gotten behind the seal. I have done it with the more delicate Esteem too with no problem. Not everyone may get the same mileage but it does give you an example of how well the seals (and the Convatec pouches) work. And my hypersensive skin (I am diabetic too) is perfect. I try to alternate every two changes. I also use a small self-adhesive gauze pad under the pouch where my tummy tends to perspire and where I am nervous about seepage. I don’t think you’re ever 100% confident but it’s much better than it was.

    Thank you, Heidi, for sharing so generously and bravely and helping me be brave too. I’ve had a bad time but it’s gotten easier with your help.

  5. Allie,

    I would have never guessed that Eakins could be used for foot blisters! I will have to try one next time I rub my heels raw.

    Though I don’t rinse my pouch with water that often, I have on occasion when my output is really thick. It didn’t seem to cause any ill effect to my wafer or Eakin, so I am not sure why the nurse would say not to do it. Sometimes my output is the same consistency as water and certainly more corrosive, so I can’t see how regular water would do any harm.

    The Esteem one-piece sounds like a nice pouch. I tried the two-piece Esteem and I found the adhesive coupling on it tricky to use. If I didn’t get the pouch stuck on the landing platform perfectly, output would seep out after the first day. It was also hard to peel off full pouches and attach a clean one out in the field. I often like to use closed-end pouches on climbs or in locations where I can’t drain, and I find the Tupperware-style plastic coupling much easier to use in these instances than adhesive coupling. The ability to interchange pouches is one of the main reasons I like the two-piece, but one-pieces are so wonderfully flat. I can see why you would use both.

    You are right about the nurses at Convatec. They are so helpful!

    Thanks for sharing and glad you find the site helpful!

    -Heidi

    1. I don’t know if I mentioned it but I actually learned about using more than one type of pouch after reading it in your blog. It made perfect sense that different situations would require different appliances. It seems obvious now but didn’t occur to me before.

      In re using the seals for blisters, I center it over the blister (of course) and fill the hole with Neosporin, then top it with a large fabric type bandaid that covers the whole seal. The cushion is perfect and works for any wound that needs extra protection or any stress point like breaking in new boots.

      I’m excited about your new goal (Mt Rainier) and eagerly await each new post.

  6. Wow, your skin looks so beautiful and healthy in these pictures! I just got my ileostomy a little over a month ago and I’m having a ton of skin issues. Not only because I have a sensitivity to adhesives, but also the size and shape of my stoma plus my body contours make me prone to leaks around my stoma. I’m currently trying new products to see if there is any difference. Can’t wait to see if they work so I can get my skin to heal nicely like yours!

  7. Hi Megan,

    Yes! Keep experimenting. It took me a while to find something that worked. If you find you are allergic to the tape portion of the wafers, but not the hydrocolloid inner portion, you can either cut the tape off and replace it with another kind as I have, or you can purchase wafers that have no tape and are entirely made out of the hydrocolloid material. Hollister and Convatec both make these. All of Coloplast’s wafers are tapeless, but for some reason they bugged my skin anyway. The Convatec tapeless wafers worked okay for me skin sensitivity-wise, but I found that due to their footprint size, they were a little too rigid and would peel up when I bended. Cutting the tape off the regular Convatec wafers and then adding the 3M Medipore tape worked better. 3M Medipore tape is really good for sensitive skin. You may have already had it on at some point, as it is often what is used post-surgery in the hospital.

    Another product that I have been experimenting with to hold my tapeless wafers on are Coloplast Brava Elastic Barrier Strips (http://www.us.coloplast.com/products/ostomy/accessories/elasticbarrierstrip/). I have been trying these instead of the 3M tape for the past couple of weeks and so far they haven’t bugged my skin.

    I have really good luck with Eakin rings. I was still getting one irritated spot with them however, and at the recommendation of my stoma nurse, I put some stoma paste on my finger and work it into the crack between the Eakin ring and my stoma. Both the Eakin and paste sort of swell together and turtle neck around my stoma as my body warms them which gives me good protection. I am hoping to write a post about this at some point. So many ideas of what to write, so little time:)

    Another thing you might try are Convatec moldeable wafers. I can’t wear them because my stoma is an extreme oval shape and falls right between sizes, but many people with ostomies swear by them because they hug the stoma so well. An Eakin ring can be worn under these too for added protection.

    One other thing I have heard recommended (though I haven’t tried myself) is putting a barrier sheet under the wafer to completely cover the skin. http://www.coloplast.com/products/ostomy/accessories/protectivesheets/

    Also, I am not sure if you stoma is short, but if so, a lot of people have good luck with convex wafers.

    Do you have an ostomy nurse to help you out? I have found my nurse to be very helpful in figuring out the various skin issues I have had.

    Hang in there and keep trying different things. A month post-op is early in the ileostomy journey and you may find that your output thickens up some too which makes things a little easier.

    Best of luck!

    -Heidi

  8. I am a CWOCN and was looking for additional resources to assist one of my patients who is having a recurrent issue. Got a couple ideas. THANK YOU for your candid blog. I will be a follower for sure! Yall are the Folks who LIVE AND BREATHE ostomy 24/7. I am only an eager assistant.

    1. Hi Linda,

      I am so glad you will be able to put some of the info to use. We do live and breathe ostomies, but I can’t imagine getting to the confident place I am now with my stoma without all the WOCNs that have helped me. Thank you for the work you do to help those with ostomies!

      -Heidi

  9. Hi Heidi,

    I Thank God I came across your web page. I have been suffering similar issues to what you documented in your article above. Many of your symptoms I identify with, and have tried as much as I can to figure out what is going on. The Convactec moldable paper flange is the only product that sticks for more than one day without leaking, but for the past six months I have had such an itching problem I have literally opened up my skin while itching each week at some point in my flange lifecycle.

    I will definitely try your cut-the-paper-off the flange idea (I never knew that the flange could still stick with 3M tape applied!), as well as talk to my doctor about infected follicles (although for the most part each ostomy change I always take eyebrow tweezers and pluck out follicles).

    Thanks very much for sharing!

    Paul

    1. Hi Paul,

      Glad you found the post helpful. I can’t believe I wrote it almost a year ago and this method is still working like a charm for me. The itchiness never came back. The only difference since writing the post is that now I cut all the Convatec tape off (when I wrote this I was still leaving a portion on in one area). The strips of 3M Medipore tape do hold the wafer on well for me… even through swimming, backpacking, running and even a 12-hour rock climb of Devil’s Tower in 95 degree temps. The strips are definitely necessary as without them my wafer will pop up on the side closest to my incision. If you pull on the 3M tape, you will notice that it stretches in one direction but not the other. I find that if I cut the strips so that they stretch the long way, they move better with my body but still hold the wafer down.

      If the 3M strips don’t work for you, another product I have experimented with are Coloplast Elastic Barrier Strips. I cut the tape off the Convatec wafer and then add one of these barrier strips around each side of the circle. You have to stretch and and work with them a bit to get them to fit around the circle correctly, but they work pretty well and I haven’t gotten any skin irritation from them. However, I tend to stick with the 3M tape since it works and is much cheaper and just feels more light-weight on my skin.

      Folliculitis is a strange infection as it can spread to follicles you didn’t even know you had! Mine was spreading to areas that were several inches from my wafer. It was so itchy!. Honestly, had I not had that folliculitis infection years ago before my ostomy that started from a shaving nick and spread to follicles all over both arms, legs and my belly, I would have never suspected it. But it totally made sense that the shearing of my skin from the tape let the infection set in in the same way that the shaving nick had that previous time. If your regular doctor doesn’t know much about folliculitis (mine did not), you may want to check with a dermatologist. They are more experienced with the condition.

      I hope you find some relief soon!

      Take Care,
      Heidi

  10. “The Coloplast wafers I wore for the initial months after surgery were made out of a fairly non-pliable plastic, and would leave a circle of painful blisters on my skin right around the outer edge of the wafer from this tension.”

    I have the exact same problem and have been trying to troubleshoot it for weeks! I’m now using the Coloplast Xpro wafers, which are much more pliable and wider than the Asura wafer I was using before. My skin has been improving and I’ll see if it clears up completely.

    Your skin looks amazing! The extra effort is certainly worth happy, healthy skin.

    1. Interesting that you are experiencing the same thing! I tried both the Coloplast Sensura X-pro and Assura extended wear (and regular wear) and it didn’t matter– I still got those bumps right around the perimeter of the wafer. It was a bummer because I loved the tail closure on the Coloplast pouches. I have had really good luck with my Convatec wafers as long as I modify them the way I described (only now I cut off all of the tape border and add strips of 3M Medipore tape around the whole thing) and haven’t had any more tension blisters develop in the past year and a half

      It does take a lot of work to keep my skin in good shape! Lately I have had to start using Duoderm on a regular basis (https://ostomyoutdoors.com/2013/04/01/using-duoderm-to-protect-peristomal-skin/) to protect certain areas of skin that were starting to get irritated right around my stoma. No five minute changes for me… it takes me a good 30 minutes to get everything in place so that my skin stays happy and I don’t have leaks. It is totally worth it though. Itchy, sore skin is the worst!

      Hope you find something that works!

      -Heidi

      1. I’ve been looking into Duoderm since I read your post. Boy are they expensive, but I guess if you’re just using a little bit, it goes a long way. I may try it to see if I can help with some infrequent irritation around my stoma.

        I’m crossing my fingers that on my next appliance change, things will look better.

      2. I’ve been looking into Duoderm since I read your post. Boy are they expensive, but I guess if you’re just using a little bit, it goes a long way. I may try it to see if I can help with some infrequent irritation around my stoma.

        I’m crossing my fingers that on my next appliance change, things will look better.

      3. They are expensive! My insurance doesn’t cover Duoderm Signal so I searched online to find a cheap price. You can get a box of 5 sheets of the 4×4 size at a variety of sites for around $30. Lately I have had two problem areas around my stoma so I use a small piece of Duoderm on each of those areas each time I change (which is twice a week). I can cut about eight of the little pieces I need out of one $6 sheet of Duoderm. This means that one sheet provides two weeks worth of changes for me.

        Hope your skin shows some improvement!

        Cheers,
        Heidi

  11. Hey Heidi,

    My insurance covers duoderm, but I’m only given a finite amount to spend per year, and my first year with an ostomy has been getting quite expensive with new products and such. “Cheap” for me in Canada is $56 and that’s a good price for the 4×4’s here.

    Out of curiosity, have you tried these products from Salts? http://www.salts.co.uk/Our-Products/Stoma-Solutions/Product/Dermacol%C2%AE.aspx

    I started using Eakin rings today for the first time after I developed a leak and subsequent skin irritation from what I suspect was caused by my use of water to rinse my pouch every time I empty it. Anyhow, the Dermacol from Salts is suppose to eliminate leaks and they appear to be less expensive than Eakin rings, assuming they do the job. I’ve requested samples and will be giving them a try, but I don’t see many people using them in America. I suspect because Salts isn’t as easy to find as the other brands.

    1. I have not seen Salts products offered in the US. I checked their page and it doesn’t look like they have a distributor here (but do in Canada). That does look like an interesting product.

      I have been really satisfied with the Eakins (after not having as good of luck with Coloplast Brava or Hollister Adapt rings) so I haven’t looked into any other brands. My insurance covers 75% of the cost of my ostomy supplies each month including my Eakins, wafers, pouches, powder etc. but for some reason the Duoderm isn’t included.

      Definitely keep experimenting. I tried so many different products in order to find what I liked best.

      It does seem like rinsing your pouch every time could cause trouble. Occasionally I will rinse mine in rare instances when I have super thick output, but I don’t do it on a regular basis. After all, the pouch is just going to get messy again within a short time:)

      -Heidi

      1. I do have a feeling it was the water rinsing that caused the problem. When I changed my wafer this morning, I was surprised to see how eroded the wafer was after only 4 days (The coloplast Xpro wafers are designed for aggressive ileostomy output) and my output is usually thick and “dry”, but the water could certainly seep through. I’ll have to stop doing it or perhaps the Salts stoma collars might do the trick…

  12. I have had an ileostomy for the past 25 yrs, have had many surgeries to straighten the small bowel as well as taking a small amount of the small bowel out each time.. then finally I had a reposition of the stoma to the other side….I have never had skin issues but I am allergic to most tapes….I have now become allergic to the last tape (just the beginning of an allergy) but my nurse has said she is going to send me a new one that is something like silicon….I am not sure of this but since I have to change my bag every day (with heavy bleeding more than once a day from time to time and I have none of the appliance on my abdomen yet other than the very inner edge of the circle to allow the stoma through, so I do have a seal around the stoma, I only have a problem with leakage if the blisters are bad deep and very close to the stoma not allowing a good seal, I have had this blister break out for about 6 yrs now, with antibiotics and different creams I can get them to the point were they are almost all gone but as soon as that happens new ones break out and more and more they are getting deeper and deeper…my skin get red at times with this,,,i did start out with cellulitis but now it has gone further…I could send a pic if you wish….I have tried all the appliances here as well as antibiotics and creams and for the past 2 1/2 yrs have not had an appliance directly on my skin….antibiotics work less and less as time goes on and the skin creams have to be changed around several times to handle an outbreak, I handle all of this myself…our main hospital is far from here and I cant make the trip with any amount of ease and I don’t want to be outside of my area of living for fear of further infections…there is a discharge many times ;and when they get deep the pain is extreme so that the drs give me Demerol when I go in…they never touch as I am not fond of anyone touching me when these are so open and I refuse to leave them exposed to the air outside my own home for any length of time…since I am not going to go to another dr I would appreciate if there is anyone who has gone through this…a dermatologist has been suggested but again all the above reasons….it is not that I don’t know how to look after myself, I have had this for over 25 yrs now and many times have taught a dr or nurse that would take care of me in emerg…I am frustrated that I get so close to having it completely cleared up only to break out again in blister 😦 a friend of ours just died after being in the hospital for over a yr with infections from his ostomy 😦

  13. sorry I guess I should have said my appliance is held on buy tape, I use a soft cotton sterile 4×4 gauze cut in large strips to go on my abdomen which will have one of the creams on the blisters and then the appliance goes on and taped to my abdomen but only around the stoma does this appliance touch my skin and changing to a new bag has to be done every day (unless the bleeding is heavy then twice in the day) I can not use the powders as they burn me and I cant use the protective cream as it just slides off the open blisters and does nothing to help heal or protect, I will look up the name to what I had thought it might be with the description and pics I have seen, be back shortly

  14. this is the name and the photos on line as well as the description sound and look like mine thank you for any help you can give for me to try at home (no hospitals or new drs advice please) I have used silver that helps to a certain degree but is very hard to get

    1. Hi Heather,

      Thank you so much for writing. I am sorry to hear you are having trouble with your skin. It sounds very painful! I am glad you are able to get the wafer to adhere right next to the stoma, but I hope you can find a solution to the ulcer problem. I don’t have any experience with the skin issues you are having. I do know that Jackie, the blogger who runs the site Blood, Poop and Tears, had a possible Pyoderma Gangrenosum ulcer on her parastomal skin at one point (though I believe it ended up being something else). I wonder if you could look up her site and those posts for more info. I also think I remember reading that Pyoderma Gangrenosum is thought to possibly be auto-immune in nature which may require medication. Though I have not had ulcers on my skin, I did once have my stoma separate from the skin around it right after surgery and form a gaping wound. I had good luck packing the gap with a dressing called Meglisorb. I wonder if it would help to dress your ulcers with that. Sorry I can’t offer much more help. Maybe someone else will chime in to share ideas. I hope you get some relief soon!

      -Heidi

  15. Thank you Heidi,
    I appreciate your taking the time to answer me….this has been ongoing for so long and the antibiotics are slowly losing their affect….we have tried some absorbent materials throughout the yrs but it seems to cause more of a problem…the deep ones are very painful and I have all but stopped moving so that I don’t aggravate the situation….I will see if I can google the site you have mentioned and maybe in the meantime someone may have more info here as well……oh, my disease that caused this ostomy is ulcerative colitis…as well I have RA and osteo…the nurse thought at first I had chrons when this first started and was on the stoma and the inside of my mouth as well. She had concerns for the fact that infection was showing as going through my body from the stoma….that has since stopped but still left with the blisters and ulcer type wounds…maybe this info might jog someone’s memory 🙂 in the mean time I will look for the site you suggested…thank you so very much for your help ❤
    Heather

  16. I have this same problem, I believe. I had to give up my beloved coloplast sensura mio bags because the plastic wafer was causing redness along the outside. The mio was perfect for a while, after surgery, when I was just sitting around. Once I started playing golf and basketball again, I started having problems. My WOCN also prescribed nystatin powder, but it doesn’t seem to be working. It’s so itchy. It drives me crazy! I went to my local drug store today to see if I could score some medipore tape, but no luck. Had to order some from amazon and I have it coming rush shipping for tomorrow! Where to you buy your tape?

    Heidi, are you still using the same convatec wafer and bag shown in the picture? This blog post is old, so I was just wondering if you had changed products or not. I am 3 months out from surgery and am still trying differents brands/models. I have some convatec moldable wafers that I can use, but I don’t like their bags. The back of the bag is so “plasticky”. It seems like it would just make me sweat even worse than the Hollister bags I’m using now. The bag you show in the picture looks like the same convatec one I ordered.

    I am going to try the starburst method as soon as I get my tape.

    1. Hi Kelly,

      Thanks for writing. Yes– I still use those same Convatec wafers and pouches. I don’t mind the plastic pouches as they dry really fast after swimming and I like how they feel so lightweight. The ones I use are filterless and have a white plastic/fabric-ish backing and Velcro tail. The front is an opaque flesh-colored plastic with no fabric covering. It is funny, because when I first got the samples I thought I would hate them, but then they turned out to be my favorite. However, I sew cotton pouch covers to put over them which absorb sweat and make them more comfortable. If you don’t like the opaque plastic Convatec pouches, you may like their newer Natura Plus line. They fit the same wafer, but the pouch is different. It is covered in cloth and has a wider opening. You can also turn the bottom of the pouch inside out so that it flips up into the “Lock It Pocket”. (It is hard to explain without having it in hand.) Basically the “Lock-it-Pocket” makes the pouch shorter. One issue though is that the opaque version only comes with a filter, and that filter tends to leak for me. I put waterproof tape over it which solves the problem, but then I either have to burp it from the flange or install an Osto EZ Vent which is trickier to do on those pouches than my regular filter-less opaque plastic ones.

      I also continue to use that same tape method. Yeah– 3M Medipore tape is impossible to find at regular drug stores. I get mine from an online store called Health Products for You. They often have extra online discounts if you sign up for their email too. If your skin is still not healing and itchy for a while after changing methods… you could have ended up with a folliculitis bacterial infection like I did. It settles into skin that has been irritated. Oral Keflex antibiotic cleared it right up, and I have not gotten another folliculitis infection since healing the skin and addressing the cause of the skin shearing. One note on the 3M is that sometimes you will notice one piece of the “sunburst” peeling off. When I see that start to happen, I simply remove that strip and add a new one. It happens more when I have been swimming a lot.

      On a side note, I am in the process of experimenting with Coloplast Elastic Barrier Strips. I thought they might work well for holding down my trimmed wafers instead of the Medipore tape and they are sort of stretchy (a bit like the Mio wafer.) However, I got the same skin shearing with them. I am trying them with notches cut into them to see if they move better with my body. I plan to write a blog post about my findings in the upcoming weeks. I have a feeling I will still like my trusty 3M Medipore the best though.

      Hope this helps. Please let me know if you have questions about the 3M Medipore method when your tape comes in the mail. Good luck!

      Cheers,
      Heidi

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