In approaching the two-year anniversary of my ostomy surgery, I was looking back at an email I wrote to Doug from the hospital during my final severe UC flare. A few days before writing it, I had received my very first infusion of Remicade. It had worked wonders to get my symptoms under control, but I did not want to take such a potent drug for the rest of my life if it could be avoided. I was strongly leaning towards pursuing surgery once I got out of the hospital and wasn’t so sick and weak (a decision that became much clearer when side effects of the drug became more than I could bear). Even though I was quite confident that I wanted surgery, I was still scared of getting an ostomy due to the horror stories I read on the internet–especially the ones that revolved around leaks. I had just read a worrisome tale on the web when I sent this message:
October 2, 2010
This all sounds so complicated and overwhelming. I DON’T want to be infused with drugs the rest of my life but this sounds so hard too. What if I can’t find a way to go climbing or backpacking without creating a leaky poopy mess? Are you confident we will be able to figure this all out together without getting fed up? Maybe it feels different when someone faces surgery in an absolute emergency, but I am choosing this aren’t I? Need some reassurance.
Despite the fears, I knew in my heart that surgery was the route I wanted to take to treat my ulcerative colitis. I met with my surgeon and was then scheduled to meet with my “wound, osotmy and continence nurse” (WOCN). I had lots of questions for her, including several about leaks. She assured me that once I found the products that worked for me, leaks should not be an issue. I liked that answer, but I wasn’t sure I believed it. From all the things I read, leaks just seemed like a given with an ostomy. After my surgery, I stocked my car with spare pants, put waterproof pads on the bed when I slept, and bought a collapsible wash basin to wash potentially poopy clothes on future backpacking trips.
It didn’t take long to experience my first leak. Shortly after I got home from the hospital, wound drainage got under my wafer while I was sleeping and broke down the adhesive. Though not a huge disaster, a little bit of stool did escape. I had been using a strip paste right around the opening, but it did not adhere to my skin well. I decided to set up an appointment with my WOCN to see if she could troubleshoot my problem. After hearing about what happened, she left the room and came back with something that looked like a flat donut made out of Silly Putty. It was called a barrier ring. She showed me how to put it on, gave me a few extras, and told me how to order more. I left the office hoping for the best.
So how long was it until the next leak? It has been almost two years since that appointment and I have yet to get another one. My nurse was absolutely right when she said finding the right products is crucial. For me, a barrier ring was all I needed to become confident that output would not seep out from under my wafer. Whenever people mention leaks, the first thing I ask them is if they have tried a barrier ring.
Barrier rings come in many different brands. The first one I tried was an Adapt Ring by Hollister. I used these for four months and liked them a lot. However, I later tried an Eakin Cohesive Seal by Convatec and found that they were more resistant to erosion from my output and stuck to my skin very well–almost melting onto it. Some people don’t like this because the residue is hard to remove. However, that stickiness is exactly what makes them work so well for me; nothing gets beyond the Eakin. I also tried a ring by Coloplast, but so far, the Eakin Cohesive Seals are my personal favorite. Everyone is different, so it pays to try every brand to see which is the best fit for you.
The other thing I love about barrier rings is how well they protect my skin. Wilbur, my stoma, is an active guy. He wiggles, dances and expands and contracts a lot. To leave room my stoma’s gymnastic routines, I cannot cut my wafer too close to it and need to leave about 1/8 inch of my skin exposed. A barrier ring swells up to fill in this space. At first I was a little shocked by how much the barrier ring turtlenecked around my stoma when it was exposed to moisture, but I soon realized that this is exactly what they are designed to do in order to protect the parastomal skin.
The following photos show my favorite way of attaching a barrier ring. This method minimizes the chances of getting the ring wet which allows it to stick to the skin very well. Along with using a barrier ring, I change my appliance every 3-4 days. Beyond that time frame, my Eakin Cohesive Seals erode and leave my skin exposed.
Nowadays, the spare pants sit unused in the car (well except for the one time they came to the rescue when I dropped my tail and spilled output all over my trousers), the package of waterproof pads is gathering dust in the closet, and I have not had to do laundry on any backpacking trip. It doesn’t matter whether I am climbing in 95-degree temperatures, snowboarding in the frigid cold or swimming at the pool. I always feel confident that my appliance will not leak during any of my activities when I use a barrier ring. Even in the rare instances when my wafer has peeled up, my barrier ring has always held tight and maintained the seal.
So if you are having leaks and haven’t tried a barrier ring, I highly recommend getting a sample and giving it a go. If the ring doesn’t prevent your leaks, meet with a WOCN and see if they have any other recommendations. Talk with other people with ostomies on the internet or at local ostomy support groups and find out what they suggest. With the right products, leaks with an ostomy shouldn’t be a given; they should be the exception.
69 thoughts on “Ring around the stoma: my best defense against leaks”
You’re convincing me I should give these a try. I have an ileostomy and while I don’t generally have problems there’s always room for improvement. I had quite alot of leakage issues when I first started out. Problem 1 was that my stoma was gradually getting smaller as I healed but I was still cutting my wafer the same size. Problem 2 was that I was using a couple of products my nurse recommended, a cleaning solution and some sort of adhesive. I can’t remember exactly, it’s been quite a while. I knew something wasn’t right so, being a minimalist at heart, I started experimenting with eliminating products as many products as possible from my regimen. Sure enough, things got much better. The one thing I found that I couldn’t do without was the stomahesive paste and I’ve been using it ever since with good results. Now I think I’ll give the barriers a try. I use convatec natura moldable wafers – 2 piece system, they’ve worked well for me.
Thanks again for your informative post
You said you spent some time in Yosemite – I live in Mammoth Lakes – not too far away on the east side. Yosemite is definitely a special place
Good luck on you’re Mt Ranier trip
Thanks for the comment. I worked as a park naturalist in Yosemite for four years (until 2004) and lived right in the Valley. It was a once in a lifetime opportunity and I still miss it sometimes. Such beautiful country! Mammoth is a gorgeous place to live too. I have visited the east side a lot and did a trans-Sierra ski trip once starting on the east side and ending up at my doorstep in Yosemite Valley. Absolutely amazing!
I have to say though that I am glad that my ulcerative colitis waited to get bad until I moved to a larger metropolitan area. Driving to Fresno for medical care was always a major undertaking. Nice to be only 20 minutes away from my doctors and surgeon. Do you find it challenging living in a smaller town?
I would definitely recommend giving the Eakins a try. I find they erode less quickly than paste, though I seem to have crazy corrosive output. Sometimes I swear it is going to eat right through my Durahesive wafer!
My stoma liked to shape-shift in the first few months too. I thought I would never get a pattern cut that I could use more than once. Just when I thought I got it right, my stoma would shrink again. Finally, around 4 months post-op, it finally settled into its current size. I wish I could talk my stoma and parastomal skin into liking a minimalist lifestyle. Mine is the opposite and likes things to be extravagant with the perfect layer of powder, barrier film, ring etc. I guess we have to do whatever it takes to keep our ileostomies happy:)
Thanks again for the note!
Hello Heidi ,My name Jim and I had my stoma since 1985.I used and tried all different methods because of technology has been getting better.My method at first.This is my method for along time.Now this is when taken off the waffer.I used adhesive skin remover ,to remove all the sticky substances on the skin. Then I used a adhesive protected to make the skin sticky.But let his dry just a few seconds, Then and used stoma paste on the waffer.Oh let me say before,after you remove adhesive with adhesive remover, clean the skin with a wet wipe and only use paper towels. And not toilet paper. Because toilet paper has ingredients that don’t remove the oil on you skin.And you want get a good bond.So now I use a different way to get a very good bond the best I used so far.The name of the product is named Torbot,a bonding cement. But this is made for a stoma. And its really like a second skin ,Torbot removes so easy.Just use a damp paper towels, with just a small amount of water.Torbot will just roll off so very easy and it protects the skin.This is a really good method when the skin is red or irritated.And then skin will heal a
Lot faster. But if you use this method of Torbot,I never had irritated skin.So now after you have the skin ready for the waffer.Before putting on the waffer take Torbot and apply it on around the stoma and after one layer is dry,you can wave you hand or whatever you have so the first layer drys.And it drys fast but Torbot will steal be ready forbonding. Now after the first layer is dry put on two more layers but just put on Torbot on thin layers at a time.Then after it drys apply your waffer on and press down with your hand and you hand will heat the waffer to take a good bond.Also you can apply Torbot on the waffer also as it is on your skin to get a really good bond..You can order Torbot from your medical store were you get you you products.Here is the information for ordering Torbot order number is TT410 Torbot in four onces is the only size I can find.The saying on the bottle is Torbot Bonding cement TT410,four onces.And Torbot has a bush under the lid when opening,and that makes it nice to make a smooth bond.So I found out about this when a company sent me a letter and I ask the if they have a product that would make a very good bond then she told me about Torbot cement. Ok I hope this will help you and others that read this.So when you order who ever you use for getting your products you will have to get,Them or you can order it your self but it a lot higher than in the medical store, so here is Torbot number ,1-800-545-4254 or http://www.torbot.com.hope this will help Jim
I had never heard of Torbot, but it looks like it could be a very helpful product. Thanks for letting me and my blog readers know about it.
Heidi, it has been a really inspiring blog from you. I myself have Permanent ileostomy from last 3 years, and i too precisely opted for this option so as to live a more free life and not worry too much about running to the bathroom. I had been suffering from UC since 2003 and ended up with ileostomy in 2009. My doctor was pushing me for trying Remicade, but i guess i was too fed up in these many years of taking steroids for UC that i wanted a permanent solution to this and hence I opted for the surgery. However I have one question for you, as you would have also been on steroids (prednisolone) or some other steroid for so many years for UC, how were you able to taper and stop taking steroid after the surgery and how long did it take to stop those medicines. I have been trying to get of steroids after my surgery, but since last 3 years i am still unable to stop them completely. It seems by adrenal gland are still not able to function to it original liking and hence i am unable to get off the steroids. Any advice in this regards would definitely be helpful and once again thanks for sharing all your valuable experiences.
All of these stories sound nice but I’m only allowed one kind of ring and that’s the Adapt CeraRing because that’s all that Medicare will pay for. I’ve had my bag for 3 years and every once in awhile would have a problem with leakage around the stoma and the ring and the flange but lately it’s been happening more frequently. Anybody out there on Medicare that has to use the Adapt SeraRing?
I am so sorry to hear you are having issues with leaks. I have used the Hollister Adapt Rings, with some success, but much prefer the Convatec Eakins. That said, I have still gotten occasional leaks with the Eakins. Fortunately not huge blowouts, but little seeps that have certainly required a somewhat quick change. That said, I really do like the Eakin rings the best of any brand. They seem to absorb output really well for me.
Also, if there are times when I am really worried about leaks (on a big trip, giving a presentation in front of a large audience etc.) and it would be even more of an absolute bummer to get one, I will “picture frame” my wafer with a product called Coloplast Brava Elastic Barrier Strips. If output does start to seep out from under my wafer, this product will often hold it in a bit and buy me some time to get somewhere to change. However, I am not sure if these would be covered by your Medicare plan either if it only covers Hollister.
I was not aware that Medicare would only cover certain brands, but I am sure there are all kinds of rules out there depending on what plans folks have. Have you double checked with Medicare on that to see if perhaps you could do a different brand if you physician submitted a specific prescription for it? It seems unfortunate that they would limit a person to one product like that. What if someone has an allergy to a brand?
Perhaps someone else will reply on what to do when your insurance only covers one brand (other than paying out of pocket). You might also consider posting this question on the United Ostomy Association of America (UOAA) discussion board. You might get all kinds of great information there. I hope you find a solution soon!
Thanks for the great question regarding prednisone. Though I had UC for many years, I was never put on prednisone for long chunks of time. It took me seven years with symptoms to finally get my official UC diagnosis, so during that time I was not on any medications at all. When I was officially diagnosed in 2006, I was put on Asacol and Rowasa (mesalamine) enemas. They worked fairly well for a whole year before my UC finally got bad enough for prednisone. I had a bad flare at that time that sent me to the hospital where I was prescribed my first-ever taper. Though I had very few true remissions from my UC, it was only during my worst flares when I had a lot of bleeding, bad urgency and multiple BMs that my doctor actually prescribed prednisone. Most of the time I was just on the Asacol and Rowasa. Towards the end of my UC journey, prednisone pretty much stopped working for me anyway. My total prednisone intake during my entire UC history was as follows:
-July 2007: a 40mg taper
-August 2008: a 40mg taper
-April 2009: a 20mg taper
-August 2010: started a 40mg taper and ended up being on varying doses of oral and IV steroids for the next 3.5 months, with the highest dose being 80mg.
My doctors were very cautious about prescribing prednisone due to its effects on bones in the long term. Even on the doses above, I still ended up with osteopenia which I am trying to reverse through supplements and exercise.
My final taper of prednisone occurred at the same time I had surgery in 2010. I had been on 80 mg during my final flare in the hospital. My doctors slowly started to taper me down in preparation for surgery. It was a bit tenuous because they wanted me to be on the lowest dose possible for surgery, yet they didn’t want my UC to flare up again right before the operation. I ended up getting down to around 30 mg by the time of my operation. I continued to taper after surgery. My taper from 80 mg to 0 mg took roughly 3.5 months total. I believe I hit 0 mg roughly 6-7 weeks after the operation. I do remember feeling tired and somewhat nauseated when I got down to 5 mg and then through 0 mg, but eventually my body perked up and that passed. I never had a problem with my adrenal gland not waking back up.
Sorry I can’t offer much advice. It sounds like you may have been on prednisone for a much longer, more continuous time, so I am not sure how that would effect your ability to finally get off of it. I can’t imagine how difficult it must be to be all through with surgery and to still be having to take prednisone. So sorry to hear you are going through this. I hope you can find a solution soon!
Thanks for your time and attention in replying to my questions.
Yes, I have been on steroids for about 9 years now and I am trying to taper them off slowly.
One more question I had, and I hope I am not bothering you too much with my questions :-), as I wanted to know if you experienced food obstruction post surgery. Since my surgery, in last 3 years, I have had 4-5 times food obstruction and had to be hospitalized to clear it up. Is this expected after such a surgery? and would this continue to happen? or is it just in the initial years after the surgery?
Also overall I feel quite weak and less on energy even though it has been 3 years since my surgery, Also I experience a lot of muscular pain. I am not sure is it because of the tapering of the steroids or due to the surgery.
Thanks again for being so kind and helping me with my queries 🙂
I am fortunate in that I have not experienced any food obstructions and have been able to eat most foods with no issues. It does seem like many people do deal with blockages or partial obstructions from time to time though. I have heard that blockages can sometimes be caused by scar tissue kinking or compressing the remaining intestines, though I imagine there are other causes too. Some people also seem to be more prone to them in general– though I am not exactly sure why. I also don’t know if blockages most often happen early on or years down the road. That would be a really good question for a surgeon. I have certainly heard of people getting them for the first time many years after surgery. Sorry I can’t be of more help with these questions. I have wondered about many of the same things.
My energy has improved since surgery as my ulcerative colitis made me very fatigued. I definitely had some minor muscle and joint pain when I was on prednisone. However it would be a good idea to ask your doctor about this as there could be so many different causes. Sometimes having an ileostomy can affect your ability to absorb vitamin B12. Have you had your levels of that checked out? I would recommend getting a full blood work-up at the lab to see if you are anemic or low in any other vitamins.
Most of my sore muscles post-surgery have been due to muscle imbalances left behind from being so inactive when I was sick and then recovering from surgery. I have been working with a physical therapist to get everything strong and in proper alignment again and it has helped tremendously. I am still working through some shoulder issues though.
Hope this helps and please feel free to ask more questions. I am happy to help if possible.
I’ve been keeping up with your blog since I started preparing for my ostomy surgery six months ago. It’s been a fantastic resource pre and post surgery. You’ve been an incredible example of someone maintaining an active life with an ostomy. I’ve been getting back into my wellness routines in the last few months, running daily and such but nothing that builds up much of a sweat, which I know can create a problem with wafers. I’m looking into taking fencing classes and with the suit and all there’s a great deal of sweat to deal with, so I was wondering what your experience has been with perspiration and wafer maintenance. Thus far I’ve only had two leak issues and they were both in the first two months post-op – and I live for eakin rings, I can’t imagine what it was like without them.
Thanks so much for creating this blog and being a fantastic voice
Thanks for the great question. I am so happy to hear that you are planning to take up a new sport with your ostomy!
Much to my surprise, perspiration has not caused any issues with my wafers sticking. I fly fish in waders on hot days and trail run in warm temperatures on a regular basis. I even did a 12-hour climb in 95 degree temperatures this summer with no wafer problems. I wear Convatec Surfit Natura Durahesive cut-to-fit wafers and they never peel up no matter how much I sweat. I have to use Niltac adhesive remover spray to even get them off. I will say that I usually change my wafer every 3-4 days, so maybe if I went for longer wear times they would eventually be affected by sweat. I change my wafer this frequently because my output erodes my Eakin if I try to go longer than that.
One thing I do notice is that sometimes my Eakin will erode a day early if I have worked out in the heat. In these cases I will have to change my wafer or face some skin irritation. I usually snap my pouch off of the wafer and take a look at my stoma and Eakin after a workout in the heat. If the Eakin has melted away, I will see some skin exposed right around my stoma. This usually only happens if it is really hot out. For instance, I had to change a day early after the 12-hour climb I mentioned above.
Really, my biggest issue with sweating is dehydration. I have to make sure I drink enough to replace the lost fluids. I end up carrying a lot of water with me while exercising.
Hope this helps and best wishes with the fencing! I find the best thing is to not be fearful about the “what ifs” regarding leaks and to just give the activity a try. If something doesn’t work with your ostomy system and a particular sport, just keep adapting and troubleshooting until you solve the problem. Live life to the fullest and don’t let your ostomy stop you from jumping in and trying all the activities you wish to do.
All I can say is, THANK YOU!
I am eight weeks post surgery and am going through another “adjustment” period with my ostomy. I was just beginning to gain some confidence in getting back to my life when all of a sudden, what I was doing does not seem to work anymore. It now makes sense to me that as things heal I need to make some adjustments. I was so very discouraged today but your posts have given me much hope that I will work through this. I am deali g with chemo therapy as well right now, (stage III rectal cancer), and really want to get the ostomy figured out.
I look forward to the day when I can inspire other people as you have inspired me.
All my best.
Thank you so much for the nice words. It means a lot to me to know the site has helped you. I am sorry to hear you are going through this. I can’t imagine how difficult it must be to deal with chemo and an ostomy. Hang in there! Keep experimenting with different products. A lot of ostomates feel “less is more” when managing their ostomies. They are able to simply cut a hole in their wafer and stick it right on their skin with nothing else and have no problems. Then there are those of us who have to go with a “more is better” plan and build up layers of products underneath our wafer to prevent skin breakdown. The only right way to do things is the way that works for you. I hope to write a couple more skin care posts in the upcoming months to show some of the other things I do. I have to be very meticulous with my skin care routine or I immediately run into problems. I also have to change more frequently than some. I change my wafer every Monday and Friday. 3-4 days is about the maximum time I can go before my output totally starts to breakdown the materials in my system and cause skin issues. Also, it still takes me over 30 minutes to change my appliance because all the careful steps I have to do. I hear a lot of people say they can change in 5 minutes. That sure would be nice, but I have realized it does not work for me. I need to do the more time-consuming steps in order to maintain healthy skin.
I am not sure if you have trouble with output coming out of your stoma while you are changing, but that is one problem I have. It can make me want to rush through changes and not do a good job. One thing that helps immensely for me is eating 4-6 marshmallows about 20 minutes before a change. I don’t know exactly why this slows down output, but it is something one of my stoma nurses recommended. With the output slowed down a bit, I can relax and really get my various skin care steps finished correctly while putting on a new appliance.
And yes, things change a lot during the healing process. My stoma kept changing shape at first and I had to make a new pattern to cut the hole in my wafer every time I changed. And my stoma is not a perfect round circle. It is a bit more like an oval amoeba shape which made it even more challenging. Finally at around 3 months post-op, it quit shrinking and stayed one shape. I have now been using the same pattern to cut the hole in my wafer for a couple of years. I had to change my appliance brand at about three months post-op too because my skin suddenly started to hate what I had been using. I cannot tell you how many times I broke down in tears when changing my appliance those first few months. It was so frustrating, but I got through that learning curve and now things are so much better. You will get through it too!
Best of luck!
I’ve a ? also for Heidi, the last pic showing the applicatioon of the Convatec Seal there seems to be
something white around the stoma, is it there to direct any shooting away from the ring until you finish the application & if so what is it & how to you get it to stay in place?
The white thing is a paper towel strip wrapped around my stoma. I do this to catch any output as I am working around the base of my stoma with the Eakin ring, powder, Duoderm etc. I basically take some kitchen paper towels, tear them into 1.5″ wide strips and then wrap one around my stoma tube-style with the end extending beyond the tip of my stoma a bit (which forms a little area to collect output). I always think my stoma looks like it is wearing a tube-style paper chef’s hat:) When one fills up, I take it off, toss it in the trash and then quick wrap another one on. The wetness of my stoma is enough to make it stick. This method has made changing so much less stressful. My stoma can be outputting quite a bit and I can still take my time with the change and get my powder and Eakin on just right. The paper-towel-strip-wrapped-stoma can even fit through the hole I have cut in my wafer so I can get that situated correctly. Hope this makes sense!
Thanks so much for contacting me. My stoma is only 7/8 22 mm with a small flat spot near the belly button side & the Eakins have been a blessing, but its only about 1/2 in. high so I hope that this still might work for me. I get a leak towards the belly button due to a diagonal sag from
above , that runs across to the bottom right side of flange. But only spot that consitently leaks is near belly buttom & the tape with warmth & movement wants to lift and/or move towards the flange. but the eakin still holds like you said even if the flange has lifted up some. Using the Sur-Fit Natura Stomahesive flexable flange. Convatec sug. using some strip paste, I tried myself with the esteem one nite/& Eakin but hadn’t gotten the bag on smooth enough. My husband has been attaching the bag to the wafer, & then after placing the Eakin sticks the whole thing on at once, I use a Q-tip to press outside of wafer & inside of ring to the Eakin as he doesn’t think wise to hold the Eakin for the 30 sec. recommended due to output. Am getting anywhere from 2 to 3-1/2 & sometimes 4 days wear time this way. I can’t quite get a real good look to stick it on that way myself. I also try to gently lift the sagging skin above as he sticks it on & quickly press the tape flange down into the
little dent by the belly button. Any further suggestions will be appreciated. Your explanation of the pic. makes great sense & am encouraged by all that you are able to do, I so want to get to that place, where I’m at now is not good, somewhat fearful of even bending over too much. Its been 8 months since changed it to ileostomy, had been trying mostly vegetarian food, salads etc before this happened, have made some smoothies with spinach, fruit, protein pwdr, but most days don’t want to think about eating or cooking. Thankfully my husb. is easy that way. My chemo port is coming out in about 2 weeks, PTL. Is there a need to keep track of liq. intake? usually get about 6 glasses day. I assume everyone with an ostomy sleeps on their back or a little on their sides & has to wake to empty at least once in nite w/o the immodium, would that be correct? Mine doesn’t seem to want to settle down til 10:30 pm so then I can get a few hours of sleep after last time. Thanks so much for your time. Carla
It sounds like you are doing a good job troubleshooting. My husband helped me a lot at first too until I learned to change my own wafer with practice.
I would keep using the Eakin rings since you are having good luck with them. When I was healing up from surgery, I had a divot next to my incision and I used strip paste under my wafer to fill that section in. I used the brand by Coloplast (I think it is called Brava now… http://www.us.coloplast.com/products/ostomy/accessories/strippaste/). I don’t have to use the strip paste anymore as that divot went away when my incision finally healed.
Since it seems like your Eakin is working well and the main issue is that the flange is popping up, you could try to picture frame your wafer with a product called Brava Elastic Barrier strips by Coloplast. (http://www.us.coloplast.com/products/ostomy/accessories/elasticbarrierstrip/). I have used these before on some occasions and they hold down the edges of my wafer really well. You may have to trim the Convatec tape to a circular shape to get them to fit right. Sure Seals are another option for this though it seems like my skin likes the Brava ones better.
Also, have you tried a Convex wafer? Your stoma is fairly short, so I wonder if this would help. (Mine is long so I have never tried Convex).
One other possibility is to try another brand of products. Some people love the brand Cymed because the Micro Skin wafer is so thin and flexible. (http://cymedostomy.com/index.html) I have never used these because they use adhesive to join the wafer to the bag (like the Convatec Esteem ones) and I prefer Tupperware-like two pieces. However, maybe a thin product would better conform to your skin and bend with your body.
Also, have you tried the Convatec Durahesive wafer instead of the Stomahesive? I find that the Durahesive sticks better and is much more resistant to ileostomy output.
Everyone is a little different on their water intake needs. I have to drink a lot more than 6 glasses of water at day. I lose count but I am guessing I drink 3-4 liters a day… more when I am active. Most of the time I don’t need to get up in the middle of the night to empty. In the morning my pouch is full and looks like a blimp with lots of air, but I have never had a leak or blowout. In the first 6 months after surgery I did have to get up more at night to empty and I did take Imodium, but after a while my small intestine adapted and my output slowed down. At that point I stopped taking Imodium and could make it through the night (most of the time… there are exceptions). I have always been a side sleeper, so I did not have to change my sleeping position after surgery. I change my pouch every 3-4 days. If I try to go longer I get skin irritation around my stoma because the Eakin breaks down and leaves skin exposed.
Hope this helps! So glad to hear that you are getting the chemo port out.
Keep hanging in there. Things will get easier! There is such a big learning curve to all of this.
Hi Heidi, This ileostomy surgery was back in Jan, so maybe its more like a sag of skin downwards.
My husb. said go ahead & try the sample of strip paste & it still leaked out around the strip, so I thought it might have been a little high so I flattened it out more & by then I had the 2 samples of the moon shaped strip to pic frame that side (Brava Elastic Barrier Strip?) Convatec didn’t send info w/them, used a whole one lst , stlll had a blowout. Looked like the barrier strip turned a little
white below the strip paste & paste got just a tiny bit darker near the ring. So I wondered if it was trying to tell me it was going to leak, so should have believed it. The edges of the moon shaped one were a little irritated where it touched the skin, so I cut the 2nd one in half. It does a good job of holding down the flange tape over the belly button though, I ordered the medipore tape tonite, its the one that has the H in the name.
After your reply I talked to Convatec & asked a lot of ?’s noticed your use of Durahesive & they told me that it was the one that you mold & we tried that & ring being so small couldn’t do anything to mold it up to the stoma. Might try leaving the strip paste out next time as it doesnt seem to chg.
anything. The paper towel tip helps when I’m doing my part. I like you prefer the tupperware type.
I was especially glad about the zip lock bag for emergency emptying should I have a need on the
way fr. the country to town where no one (if there should be a minimart near) will allow use of their
facilities. Having come from the South Bay area in S. Calif. where there is everything near & open
at all hours, its a diff. ballgame out here in N. Carolina. So I got rid of the large plastic jar & tucked
a set of zip locks in the car.
The output comes out totally liq. & then mushy, the worst is when it makes a sticky blob right in the ring & on the stoma. I try to squish it out by diff. techniques, but the last 2 times I’ve had sm.
pcs. of the sticky stuff come out into the tail when cleaning it. So maybe thats not so good, but I
know the stoma itself shouldn’t be making it feel awful, but I can’t leave it like that. so I just try to be careful. Eating very small amounts of meat or a larger meal seems to cause it. The brochures
seem to advise eating beans & fiber, so far only tried refrieds. Perhaps having such a sm. stoma means I’ll not be able to eat more things as maybe the actual opening has to be smaller. I even
try to take the seeds out of the tomato & skin off when I use a few pcs. Surgeon told me eat whatever I wanted just chew real well.
When It was a colonoscopy I got a lot better wear time & they did send me a sample of
the Convex wafer but it was uncomfortable, but it may yet prove to be an option down the line.
Now that you are able to be active when you weren’t so much before has to be a great joy to you both. It really is a large & stressful learning curve but we all need to keep truckin on with it, & you
& the website are a big help. Thanks again for your kindness. Carla
It sounds like you have tried a lot of things. Another thought I had is to perhaps use your Eakin ring around the stoma but then add a bit of another one to it to build up one side more. In other words, form an Eakin ring so it is taller on one side. I have found that I can touch them and mold them into any shape and they still stick fine. Maybe you could even use strips of Eakin (just take the ring, rip a piece off and roll it into a snake shape) instead of the Coloplast strip paste if you find the Eakin sticks better.
As far at the Durahesive, I am not sure why the Convatec rep told you it only comes on the moldable wafers because it also comes on the pre-cut and cut-to-fit ones. I have an odd shaped oval stoma and fall right between sizes in moldables and can’t use them. I must use cut-to-fit wafers they definitely come in a Durahesive option. I have found them to stick much better than the Stomahesive and they are more resistant to ileostomy output.
My output pancakes around my stoma too when it gets thicker depending on what I have eaten (and sometimes mine is all liquid too… it varies a lot). I have a long stoma that droops over and points towards the bottom of my pouch (mine is a tad over 1.5 inches long) so the thick output doesn’t cause much of an issue for me as far as making the wafer pop off or anything. Eventually the thick output works its way down to the bottom of the pouch. Sometimes I will have to help it along by pressing on my pouch. One thing I do notice is that if I have not hydrated enough, my output becomes very thick. Would drinking more water would help in your situation?
I don’t know if having a smaller stoma influences what you can eat. That would be good question for a surgeon. My stoma is a 1 inch by 1.5 inch oval so it is on the large side. It seems to spit out whatever I eat no problem. I eat all sorts of beans… refried, black, kidney and don’t take seeds out of veggies. I can eat just about anything as long as I chew well and drink a lot of water. Of course I see the bits of undigested veggies and seeds in my output, but they never block my stoma so I don’t worry about them. Everyone is different in what foods they can tolerate though so just keep experimenting with that too.
You are so right that the learning curve is huge! There are so many products to try out there. Has your ostomy nurse been able to help at all? My nurse has been so helpful in troubleshooting problems for me.
Best of luck!
Hi Heidi, my dial up wasn’t working, while its finally acting right wanted to thank you for keeping in touch with me. I went back to using the protective barrier wipe and nothing else & it started to work better. Talked to my surgeon though & he sug. talking with the wound care specialist. She gave me some specific products (durahesive precut & moldable a size smaller which I tried the 2nd one today). The precut lasted fr.Wed. noon to Mon. noon. Didn’t want to try it any longer but felt good
& looked in pretty good shape on removal. I did one of the usual ones myself & the moldable today, think my husb. is right, that I’ll feel more confident after doing it myself more often. Surg. said 3 1/2 to 4 is pretty average for ileostomy. Also have sample of Active life one pc, but it has the plastic closure, seems too long & will jab. Having a laugh at myself, got brave, & actually ate slices of tomato without removing seeds/skin. Not bad for an old woman. The young man Bo, in his pic right after surgery has the pouch aimed outwards towards his hip, is that something that is done a lot, or for a particular reason? I’ve not heard of a sub total colectomy or a sub total ileostomy before, would you know about that? Trying the slim eakin also like Convatec sug. Holding it down for 30 sec. they want to stick to your fingers, so maybe sticking the backing on again would help. Thanks Carla
Sorry it took me so long to write back. I haven’t had much time to devote to my blog over the past month, but I will get back to writing on it more regularly as soon as things ease up in my schedule.
I am so glad to hear that you got the great wear time with the Durahesive. I fit the pattern your surgeon suggested: every 3-4 days.
Keep on being brave with the food! You don’t know how various food items will affect you until you try. Once healed from surgery, it seems like some people stay away from more foods than they would have to. It is easy to be afraid by reading all the ostomy/food horror stories out there, but remember that everyone is different. Just because popcorn, nuts, mushrooms, various raw veggies etc. are on one person’s no no list doesn’t mean they will be on yours. Just experiment with small amounts and see how you do. I never remove seeds or skins from my tomatoes and they pass through just fine. Sure- I can see evidence of intact skins in my output, but so far they have never come close to clogging anything up so I don’t worry about them.
Some people do like to pivot their pouches at various angles. I think it is just a matter of personal preference. One reason a person might do this is that some belts and products out there (for instance, the regular Stealth Belt) are designed to be worn with the pouch turned horizontally. I have tried angling my pouch as an experiment, but I prefer mine to hang straight down.
A subtotal colectomy is where the colon is removed but the rectum is left. I have a total proctocolectomy which means that my entire colon along with the rectum and anus are removed.
I have tried Eakin Slims, but they disintegrate too quickly for me. I need the thicker ones. They do like to stick to your fingers! Your paper backing idea sounds like it could be a good solution.
Thanks for writing and I hope you continue to have an easier time managing your ostomy. There is such a big learning curve isn’t there!
Hi Heidi, Well I spoke too soon re; Durahesive, made my skin sore, then didn’t work, so went back to the ones I was using before but added back in the Barrier Wipe as my husb. sug. & seem to be back on the 3-4 day schedule w/o leaks. Maybe the cold weather is also a factor, but I’m so very glad. Thanks for the info, I guess I’ve the same surgergy as you have plus they did a hysterectomy. Husb. still helping stick it on with the thick Eakin & the flange & bag stuck together.
cutting off the one tab near belly button & adding one pc, stretchy tape seems to be keeping the
tape flange from moving too far in. Seeing the Chemo Dr. for the 6 mo. Dec. 7 going to check see
if should be tired this far out fr. treatment. Just saw the info given to Kathy, re the Eakin, they are the main reason that things are working now. Joy to know that not only is your blog a insp. to the
ostimate but to the blessed spec. caregivers like Kathy. Had heard about the silicone spray but my
husb. was concerned about the very aspect you remedied of the next one not adhereing. Enjoyed the pics & article about your helping out the flood victims. Thats what its all about loving Lord Jesus Christ & others. Thanks again for the info & encouragement to all, Happy Holidays Carla
Sorry to hear that your skin reacted poorly to the Durahesive. I am happy that the Eakin Ring is working for you though! A 3-4 day wear time without leaks is great. The Sensicare Adhesive Releaser silicone-based spray is amazing stuff. It doesn’t leave a greasy residue at all. The Durahesive wafers stick to me so well that I have to use an adhesive releaser or my skin gets damaged when I pull them off. The Sensicare spray is the best I have tried yet!
You are so right! Caregivers are such a blessing. I am extremely thankful for the care my hubby and mom gave me after surgery.
Helping with the flood relief was one of the most rewarding things I have ever done. I volunteered another day and we were sent up to Jamestown, CO, one of the heaviest hit areas. The devastation there was heartbreaking, but it was inspiring to see so many people coming together and helping one another. Makes you realize how much good and love there is in the world.
Hope you had a wonderful Thanksgiving!
I really appreciate your blog. My mum who is 75 just had her surgery and is struggling with her bags. They are leaking and she has been back to the hospital 3 times and admitted again due to the constant leaking which has caused her skin to basically have a burn to the surrounding stoma area. The bags keep leaking because the skin is so sore and raw and oozing now! This is so frustrating. She is using a 2 piece product from Coloplast, but perhaps another product may be in order. My mums confidence is disappearing and she is afraid to leave her home due to leaking.
Hopefully this will be sorted out soon.
Thanks so much for your inspiration!
I am sorry to hear that your mom is having skin issues. It is so hard because if you don’t get a handle on skin problems quickly, they tend to snowball and get worse. I would highly recommend trying one of the rings. Eakin rings are my favorite, but try all the brands until you find the one that works the best for your mom. When I have had skin irritation near my stoma, I have also had really good luck with Duoderm over a crust of powder and Cavillon skin barrier ((https://ostomyoutdoors.com/2013/04/01/using-duoderm-to-protect-peristomal-skin/). Sometimes it is hard to get the Duoderm to stick on skin that is already oozing. When mine has gotten that way, I have had to change my appliance more frequently and change the Duoderm every day until the weepiness goes away. Then the Duoderm sticks better and I can go back to changing every 4 days. I also found that Coloplast wafers adhere to me the least successfully. Convatec Durahesive is my current favorite. It sticks really well. My skin doesn’t like the paper tape part of the wafer though, so I have to cut that part off and replace it with strips of tape that better agree with my skin. Just keep experimenting.
Also, if your mom finds that she does have to change her wafer more frequently while the skin around her stoma heals, I highly recommend using Sensicare Adhesive Releaser Spray (it used to be called Niltac before Convatec bought the company). It is a silicone-based product that makes peeling off wafers very gentle on the skin. You just spray it on the skin as you pull back the wafer. This has been a lifesaver for me when I have had to change my wafers a lot over the course of a few days. Without it, all that peeling really injured my skin. The nice thing about the Sensicare is that it doesn’t leave a residue, so it doesn’t negatively affect the next wafer’s adherence.
I hope you find some solutions soon! Best of luck!
Thank you so much for taking the time to write this reply Heidi! So appreciated! My mum is using the Eakin rings now and they are making the world of difference! I will continue to read your blog. It’s very inspiring!
My father had his surgery 10yrs ago who was diagnosed of stage 1 colon cancer. Before he was using Coloplast 2pc but for some reason we cannot get any supply for like 2 years now so he had to switched to Convatec flexible wafer 2pc. I am from the Philippines and just happened to read your blog about this Eakin ring. Since my father’s surgery he had limited all his activities and even the amount of food he eats because he always worry about leakage. For 10yrs he never tried any skin care products and to endure all the skin problems like irritation. After reading your blog I’ll ask him to try this Eakin ring though I wonder if it is available here in our country. How many times does he need to change it? Should he changed it the same time he changed this wafer?Also are you also experiencing sometime that you want to poop in your rectum but you can’t which causes stomach pain? Recently my father had been experiencing that but we can’t convince him to see his doctor!
Thank you so much for your inspiring blog and I’ll print this so my father can read it
Thanks for writing. Hopefully a barrier ring will help your father’s skin. Eakin Rings are manufactured in Northern Ireland by T.G. Eakin Limited and distributed by Convatec. Hollister also makes a barrier ring called Adapt Barrier Rings and Coloplast makes some called Brava Rings. There may be other manufacturers as well but those are the most common in the USA. Perhaps if one isn’t available in the Philippines another brand will be? Every person seems to have their preference brand-wise. I like the Eakin Rings because they tend to swell up around my stoma and also melt to my skin (which makes an impermeable layer that output can’t get under or through) the best of all the brands. They fill in the gap between the cut edge of my wafer and my stoma really well.
I change the ring every time I change the wafer (which for me is usually every 3-4 days). Basically when I peel off my wafer, the Eakin peels up with it. Then I clean any Eakin residue off the best I can (though you really don’t have to get it all off). I usually take a shower after I peel off my old wafer but before I put a new one on. Once my skin is clean, I use stoma powder crusted with Cavillon No-sting Barrier Wipe, add Duoderm where needed to protect my skin (https://ostomyoutdoors.com/2013/04/01/using-duoderm-to-protect-peristomal-skin/), wrap a new Eakin around my stoma and then place the wafer on top of it all.
I no longer have a rectum or anus as they were removed along with my colon during my surgery. However, I do sometimes get a sensation like I have to poop. It is not painful however. It basically feels like I have to take a bowel movement though I know that is impossible as I don’t have the parts to do that anymore. Sometimes it happens randomly, but often it is when I have gas or when I am nervous about something. My surgeon told me it is called phantom rectum. This phenomena is similar to cases where a limb is amputated but a person still feels the sensation that it is there. I started to get phantom rectum immediately after surgery but its frequency has reduced some as time has gone on. However, There could be other reasons for this and I really think your father should run this by his doctor just to make sure it isn’t anything more serious.
Hope this helps!
I have an ileostomy and use barrier rings all the time, never go without one, but it unfortunately does not work well for me. I still have leaks all the time. I am 6 months post surgery, and for me, this has been an utter nightmare. I have stage IV colon cancer, but even with everything else i’ve gone through, the ostomy has been the worst. I finally started work again this past Monday and just developed a leak, 2 days after starting. I don’t know how I’m going to deal with this, although, thank God, mine should only be temporary; they said it can be reversed after chemo (don’t know when that will be, though).
I wish I could be positive about my experience, but for me it’s been a horror story. My stoma is flush with the skin, making the situation even more difficult. In the beginning i had to be readmitted to the hospital b/c of painfully raw, hamburger-like skin, which made it impossible to adhere. After trying an endless variety of products, I finally found something that worked somewhat well, although I’ve never had a bag stay on for longer than 3 days… I usually have to change it once a day, maybe 2 days if I’m lucky. Lately, however, I’ve had to change it 3-4x per day, I guess b/c of the increased activity with work and maybe the freezing cold weather outside (I have to walk a few blocks to get to work). I couldn’t even change myself until about 5 weeks ago, when I finally developed enough confidence; before that, my mom had to change me like a baby.
I’m so envious of this girl and wish I had had the same experience as her. The barrier rings have let me down, as has every other product I’ve tried. I really can’t believe this is happening; I would’ve thought that they’d have developed some other kind of technology by now, rather than just updating the same technique that was developed in the 1950’s. If I’d known what I was in for, I would have been much more reluctant to have the surgery, which I guess is why my doctor didn’t tell me much about it.
I am so sorry to hear all the things you are going through! My heart goes out to you. I can’t imagine trying to deal with a difficult ostomy on top of a cancer and chemo. I have heard that flush stomas are very hard to manage. I feel so fortunate that my body cooperated and my surgeon was able to create a longer stoma that has never retracted back into my belly or become flush with my skin. Mine sticks out a good 1.5 inches so barrier rings work well for me but I could see how they would not in your situation. Is your stoma nurse helping you? I too hope that someday their are more options for products! Hopefully you won’t have to wait too long for the reversal. If you weren’t getting a reversal… I have heard that in some cases a person can get their stoma revised if they can’t find any products that work and their quality of life is poor due to leakage and injured, painful skin.
Wishing you better days ahead!
I have a flush ostomy as well and I am in the boat with you. It is very depressing. I have used paste around the plastic part of the wafer with somewhat positive results. I suggest tinvture of benzoine applied with a cotton ball all around the stoma everywhere the wafer adhesive will touch. Stuff is very sticky and helps the wafer stick a little longer. I also have severe hydration issues so I am constantly drinking things. I am up every hour of the night to empty the bag. I have found that keeping the liqiid in the bag below the stoma helps somewhat with leakage. Hope this helps somehow!
Thanks for the suggestions for readers. I get a lot of questions about what products work well with flush stomas. Since I don’t have one, I don’t always know what tips might help. I too have heard good things about using tincture of benzoin to get wafers to stick when many other things fail.
So grateful to have found this site! My 87 y/o Mom,( she is as active and alert as any 70 y/o I know), is about 8 weeks post op with a high right colostomy and a little lower fistula on the left side. We use a Hollister flat, cut to fit wafer on her fistula, and have been using the Natura convex
cut to fit and now testing the Hollister convex ( her stoma has finally reduced in size to 7/8). The fistula has been no problem, but the stoma, a slightly raised amoeba shape, began being a problem as soon as she came home from the hospital and became more active. Even our WOCN has had a devil of a time trying to help us find an appliance that fits and does not leak! We did well, with having adhesion for 3 days until 3 weeks ago with adhesion only lasting currently for 8-18 hours. As hard as it is to accept, at least, from reading this site, I realize this transition is common around this time in the healing process. Mom has been so positive and we have been unfortunate that several leaks(major ones), have occurred when she has ventured out to resturaunts or other social settings. It is so disheartening, but everyone has been incredibly understanding and helpful and done such nice things to try and help her be less embarrassed and strong enough to keep trying to resume her normal activities.
She is unable to do more than empty her bags as she has neuropathy in her hands, that does not allow her the use of fine motor skills, required to fit her appliances. I am responsible for changing her appliances and investigating the available options for the difficulties we have with the appliances. I am frustrated that I have been unable to find the answers we need.
I have tried many/most of the various skin barriers, rings, convex wafers, pastes, powders I have found. Talked with several WOCN’s in addition to those assigned to her with her Home Health Care Agency. This week she had to have a procedure at our hospital and thankfully, while she was in recovery, I was able to meet with and pick the mind of another hospital based WOCN. My feeling of the most recent problem is that the wafers are not “melting” with her body heat and creating a seal. Her body temperature is always low and despite my rubbing on the appliance after application, it does not ever reach whatever temperature needed. This recent WOCN suggested I place a washcloth in a ziplock, pour enough water, heated by a coffee maker, into the ziplock to moisten the cloth, and place the wafer under the ziplock wrapped in a Terry towel for just under a minute, turning it over one time, before application. I tried that after a big leak yesterday, and so far so good; 36 hours later. Will be curious how it looks a little later today!
I have garnered several other suggestions with the tapes mentioned in several of your posts, but am hopeful with the discussions and your responses. Realizing that things are not easy when dealing with colostomies, but to keep trying and solutions will be found eventually is helpful. Thank you so much.
It is 4:30 AM and this is where I find myself many early mornings, trying to search for answers. I feel so much more confident that there are ostomates out there willing to help others by sharing their experiences and trials. Thank you so much!
I shall return!
Sorry to hear that your mom is having trouble with her wafers sticking. There is so much trial and error in all this and it can be frustrating. The WOCN’s method for heating up the wafer sounds like a good one. Another thing I did in the beginning was to lay on my back on the bed for a while with an electric heating pad on my belly/wafer for about 15 minutes. The warmth seemed to helped meld the wafer and my Eakin ring to my skin. I now skip that step as I have found that my wafer adheres fine without it, but it may be beneficial for you.
You might also consider trying the Coloplast Brava Elastic Barrier strips (http://www.coloplast.us/brava-elastic-tape-1-en-us.aspx) to “picture frame” your mom’s wafer. Though this won’t prevent leaks under the wafer, it will at least help contain the stool from leaking out around the edge and buy some time until she can get somewhere to change. Active life Sure Seals is another product that serves this same purpose (http://www.alpglobal.com/Sure-Seal-TM-Rings.html).
Have you tried any of the moldable wafers? Convatec makes a Durahesive Natura one that I have heard good things about. Hollister makes one too. Moldables stretch around the stoma for a custom fit. Not sure how they would work for a stoma that is short or flush with the skin, but it looks like there is a convex version. I can’t use them as my stoma is an extreme oval shape (1.5 inches by 1 inch) and ends up falling right between sizes on the Convatec moldable wafers. The large moldable is too big for my stoma top-to-bottom, yet the medium is too tight for my stoma side-to-side. I use the cut-to fit because of this.
You mentioned you were using Convatec Natura wafers. Do you know if they are the Stomahesive or the Durahesive variety? I use the Durahesive and from what I understand, the Durahesive is an extended-wear product and has slightly stronger adhesive properties than the Stomahesive. Because of this, it is generally used for those with ileostomies because of our more watery output. However, there is no reason you couldn’t use it with a colostomy. It might be worth looking into to make sure you are using the Durahesive, and if not, give it a try to see if it sticks better.
Anyway, I hope some of this is helpful. Best wishes as your mom continues to recover. I hope she finds the right products for her situation soon.
Thanks for replying Heidi!
Using the hot water over a washcloth in a ziplock, and warming up the wafer has worked fairly well. We are back to 3-4 days but still have had some leaks. I have to be very careful that the wafer comes in contact evenly with the bag in order for the entire wafer to stick to Moms skin.
I have received a variety of rings, including Eakins. I tried these early on in Moms recovery without luck. I am assuming that just as the wafers never “melted” with Moms low body temperature, the rings were unable to “melt” also. Do you think it would be OK to allow the rings to warm up under the hot ziplock? I wonder also about the rings being able to adhere to her skin as I am 9 out of 10 changes, having to use powder to “crust” over her excoriated skin. I have a microwaveable back wrap I heat and place over Moms appliance wrapped in a towel, that she lies on the bed with for several minutes as I clean up. This seems to help warm her skin to help with adhesion.
Also, do you still apply paste with the ring. I have used paste to circle her stoma in addition to filling in low folds on both sides of the wafer. I have also acquired the barrier tape from Coloplast to picture frame the area where most leaks occur. Is that the correct way to use these tapes?
I think I have figured out Moms stoma being so different from the photos of yours. Her surgery was done as an emergency. The surgeon was unable to “visualize”‘ literally, or by feel the condition of her colon and did 2 incisions in her transverse colon for the stoma and a fistula with the possibility of reanastomosis at a future date. Until further down the line in her treatment plan, we will not know whether she will be repaired or have a permanent colostomy placed on her lower left belly.
Again, I thank you and the other ostomates that have taken the time to share experiences with those of us new to this journey. Your discussions have been invaluable!
Glad to hear the warming up the wafer has helped. I think it would be okay to heat up the Eakin too. I often put mine– while it is still in the package– against my skin under my shirt to warm it up a bit before using. I would think the washcloth method would serve a similar function, but would warm it even more. If you heat the Eakin too much, it will end up melting into a flatter shape. That has happened when I have left my supplies in the hot car on road trip vacations. In these cases, I have just reshaped the Eakin back into a ring with my fingers and then put it on. It has still worked fine.
I do use paste, but in a slightly different way. I put my Eakin ring on, then I put my wafer on. No matter how close I get the Eakin to my stoma, I am often still left with a tiny crack of exposed skin until the Eakin has a chance to swell. It is in this crack that I work a little bit of paste with my finger before the final step of snapping my pouch on my two-piece appliance. The paste protects tiny bit of exposed skin until the Eakin has a chance to turtleneck up and around my stoma. This was my stoma nurse’s idea and it works great for me. Within a day, the paste does wear away, but by that time the Eakin has had a chance to absorb some moisture and swell up to the edge of my stoma so no skin is showing.
Yes- the Coloplast Brava Elastic Barrier Strip will picture-frame the wafer. They are a half-moon shape which makes them a bit tricky to put around a square wafer. However, you can trim away a bit of wafer tape to make them match better.
I was trying to picture how your mom’s stoma is different from mine. Does she have a “loop” ostomy where the stoma has two openings? Mine is an end ileostomy so it only has one opening. I chose to have a permanent ostomy right away, so I do not have the option of reconnection.
Another product I just learned about at my last local ostomy association meeting is called Marathon. I don’t know if your mom has developed any skin sores under the appliance that are keeping it from sticking. Sometimes when there is a lot of leakage the skin can become irritated and weepy which makes it even harder for things to stick. This is more common with the highly-acidic output of ileostomies, but I know a few people with colostomies that still get raw skin with leakage. Anyway, if your mom does have sores from the leaking that are contributing to her appliances not adhering, this product may be helpful in healing them.
The rep said this product creates a layer of protection over wounds under the wafer and is very impermeable to any stool that may irritate skin. You swab it over the sore, let it dry and then put your usual stuff (Eakin, wafer, whatever else) over it. Apparently it bonds very tightly with the skin, protects it and allows healing to take place. Several members of my local group have said it was extremely helpful for their really bad skin issues and the WOCN that works with our group highly recommended it as well. I haven’t had any sores around my ostomy, but if I did it is a product I would definitely try. It looks like the company sends out free samples at the above link. Again… this only if there are skin sores that are also preventing wafers from adhering. If her skin is fine and it is just a body temperature issue, it probably wouldn’t do much.
I hope some of this helps. Good luck as you continue to experiment with possible solutions. Please let me know if you have more questions.
I am so ticketed to share with you that when I changed my Moms appliance yesterday, there was no sign of irritation and certainly no peeling, red angry weeping skin around her stoma!! The first time since her surgery on 8/11!!!! I attribute most of this success to your example of “dressing” her stoma and the use of your suggested Eakins rings and the warming of the wafer and rings! Thank you, thank you, thank you! This begins her second week of successful changes on a regular change cycle of Wednesday, and Sunday with only one start of a leak, held back with the use of the Coloplast Elastic Barrier Strips. She is so relieved and is looking forward to more activities outside her home without worrying about leaks! This is truly a blessing!
Her stoma is oval shaped, horizontally across her abdomen on her right side of the naval about 2 finger widths from the naval and about 2 to 3 finger widths above the naval. It measures 7/8 using a Hollister template, but oval not circular. It remains somewhat convoluted and appears to have the opening almost centered. It almost gives the impression of the edges “rolled” outward, and tacked to her abdomen in several places. Her fistula has shrunk down much further and I change it once weekly; it rarely has any discharge anymore other than a rubbery partially dried portion that sits just at the opening. The fistula is a little lower on her left abdomen and a little closer to her naval.
When she completes her chemotherapy regimen for her bladder cancer, the Drs will revisit the issue of her colon and the possibility of reanastamosis. Her PET scan shows cancer only in her bladder, and her journey began with her being sent to the hospital with a diagnosis of diverticulitis with possible obstruction. The bladder cancer was found while investigating the diverticulitis, and kind of took over. When they realized she truly was obstructed, the surgeon was adamant that these were 2 separate disease processes going on and her colon was most probably not cancer related. Because of the condition of her gut when he operated, and his inability to visualize the site and finding it too difficult to feel the area well, due to dialation, that he would have to do the temporary colostomy and fistula and reevaluate her colon after the area was able to stabilize and infection/inflammation resolve itself. Somewhere his feelings have changed somewhat and he has suspicions of cancer being involved now. After she completes her chemo and before they remove her bladder, there will be several tests done to see if reattachment will be possible, and at the least, they hope they will be able to relocate the stoma to a lower left sided position, and I am assuming it will then resemble yours. The decision for what type of reconstruction of her urininary tract will be determined in combination with what happens with her colon. In the meanwhile, we are going to learn as much as we can, so that we are prepared to smoothly slide to whatever new appliances she may require.
We have a huge hospital in town(851 beds), but no support group for ostomy patients at this time. The WOCN nurses are available to contact however, and have been a resource for us. I happen to believe however, that ostomates themselves are the BEST resource and you in particular have proven my belief to be true. I know at one time there was a support group, and hope there will again, someday soon.
Again, thank you for sharing the information regarding the paste placement, the Marathon skin help, and responding with such good information! I am breathing easier since visiting with you and I am so appreciative as is my Mom. She is so much more relaxed, now that we finally seem to have found the right answers to our difficulties. Her confidence is returning and as I mentioned earlier, she is anxious to resume her normal activities without anxiety! That is most wonderful!
You are much appreciated! Lyn Holcom
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I hope you had a wonderful Thanksgiving. I did some traveling over the holidays and am a bit behind on my blog correspondence:)
I hope things continue to improve for your mom. My stoma does roll outward a bit on the bottom as you mentioned… and my stoma also has some “lobes” that give it an amoeba shape. The lobes are basically areas that bulged out a bit between the stitches as the intestine healed and fixed itself to my parastomal skin during recovery. Once the stoma was fully healed and the stitches dissolved, the shape stayed that way. I can still tell where the stitches were just by looking at the shape of my stoma. Anyway, these lobes roll out over the skin a tiny bit in a few areas and sometimes I get a bit of irritation under them which can be painful. This is where the paste and Eakin rings come in handy because it “caulks” those areas with gooey-ness. I cannot go more than 4 days between changes because in that time period, the Eakin and paste completely erodes away and leaves my skin exposed. It always feels so good when I change my appliance and get a fresh layer of stuff on:)
Best wishes to your mom!
I want to thank you so much. My mom just passed away and I am left to help my dad. My first experience with paste was horrible. I was searching today for reasons why the paste would be so hard to manage and I found your blog. I’ve ordered the seals and this gives me such a peace of mind as to the next experience. Wishing you the very best!
Thanks for writing. I am glad the post was helpful! I hope the rings work well for your dad. Please let me know if you have any questions as he tries them out.
I have had an ostomy for 15 years. I have some skin problems mostly due to a mesa infection that flares up every once in a while. The most recent was last month and I’vem been working to get it healedd with some success. I use duoderm over antibiotic cream my usual skin protector an paste. I noticed my skin was being irratated because my pouch seems too big. I had been using this size since a revision a few years ago. I had tried a size smaller before but seemed to have a lot of leaks when I did. I tried again for the last several weeks and I’m having leaks again. I think the problem is when my stool get thick from what I eat or not drinking enough the smaller size is pushed off when my stoma expands. I use a ring of paste around my stoma and without a leak it appears intact but I have a crescent shaped red skin. It seems from what I’ve read hear the eakin rings would provide more protection with my larger appliance. I tried them briefly years ago but I’m wondering if the would work with my convexed pouch. Any thoughts? Becky
Sorry it took me so long to respond. I would definitely give the Eakin Rings another shot. I find they hold up better than paste. Though I don’t use a convex flange, I know other people do and pair them successfully with Eakins.
That makes sense that the small flange size might get pushed up by your stoma. I have to wear a pretty large flange as well. My stoma is an extreme oval shape so I need the large flange to accommodate the long side of my stoma. I don’t know what brand of flange you use, but if it is one with a tape border, have you ever thought of trimming the tape? I did that and it completely eliminated my skin irritation issue. The wafer with the tape was just too darn big for my belly and it wouldn’t move with me– it ended up shearing my skin when I would bend and such. Completely cutting the tape off and replacing it with stretchy 3M Medipore tape solved the skin irritation issue. I wrote a blog post about it: https://ostomyoutdoors.com/2012/06/12/skin-sleuthing/
One thing my stoma nurse recommended was to put an Eakin on around my stoma as I usually do. However, it seems like no matter how tightly I try to get my Eakin on around my stoma, there is always a tiny sliver of skin showing… especially when my stoma contracts a bit. My stoma nurse has me put a tiny bit of paste in this crack between my stoma and the Eakin ring. To do this, I wet my finger, squeeze stoma paste onto it and then work it into that crack. Over the course of a few days, the paste erodes away or blends in with the Eakin, but before that happens it protects that little sliver of skin until the Eakin has some time to swell and turtleneck. I usually work the paste into that crack after I put on my wafer (which only works with a two-piece), but you could also do it before and then put the wafer down on top of the combo of Eakin and paste.
On a side note– I am surprised you can get the Duoderm to adhere over antibiotic cream. It seems like it would be too greasy. Glad to hear it works.
Best wishes and hope this helps!
My Mom has a very deep skin fold that goes across her stoma. She has leakage every day. What can I do to stop this?
Thanks for writing. So sorry to hear that your mom is having leakage issues. I don’t have personal experience with trying to fill in the area of a skin fold, but I have heard that some people have luck building up the area with barrier strip or barrier ring material (such as Coloplast Brava strips or rings, Eakin Cohesive rings or Hollister Adapt rings.) This material has a silly-putty-like consistency and can be molded and stacked together to fill in areas. The wafer is then put on top. Has your mom experimented with different brands of wafers? There are a few wafers that are designed to be very flexible. The Coloplast Mio (http://www.coloplast.us/global/ostomy/sensura-mio-launch/) and the Cymed Micro Skin (http://www.cymedostomy.com/what.html) products come to mind. These might bend into the skin fold better instead of popping up. They could also be used together with the barrier ring material I mentioned above.
If she hasn’t already, I would definitely suggest having your mom meet with a WOC nurse. They will know more about products that are available to help with this situation. If she has an ostomy support group in her town, this can also be a wonderful way to get tips from other people who may be having the same issue.
Best wishes and hope you come up with a solution.
Hello, I’m recovery from the surgery as we speak. I’ve been having a lot of leakage so reading your suggestions has helped. Also, if you don’t mind me asking, why is your iliostomy permeant? I’m suppose to have the second surgery in August.
I am glad the post helped. I chose to have a permanent ileostomy as I did not want to try a j-pouch. My reasons are described in this blog post: https://ostomyoutdoors.com/2011/10/17/permanent-ileostomy-or-j-pouch-that-was-the-question/
Best wishes with your surgery recovery!
Got my ielostomy in September 2015. My husband still helping with the changing. Having leaks lately and skin breakes. Everyday is a learning experience. I think we are expecting the bags to last too long. It is very encouraging to see that the 3-4 day isa good time frame, Thanks for the blog so all of the newbes can just see some information from others!
I am sorry to hear you are having skin issues. It can take a while to get the hang of appliance changes and to experiment with the numerous products to find what works best. My hubby helped me at first too:)
My local ostomy support group has a wonderful WOC nurse attend every meeting, and the nurse said most people with ostomies change their appliances every 3-4 days. Sure, some can go longer but twice a week is perfectly fine (and is still how often I change mine.) If your skin is wet and weepy due to irritation, you may even need to change more frequently than that until it heals and your wafer can adhere well again.
If you do have to change your appliance a lot, skin can also get irritated from frequent removal of wafers. Using adhesive remover sprays that are silicone-based are awesome for getting a wafer to peel off gently. You just spray under the edge as you lift it up. Two great brands are Coloplast Brava Adhesive Remover spray (http://www.coloplast.us/brava-adhesive-remover-en-us.aspx) or Convatec Sensi-Care Adhesive Releaser Spray (http://www.convatec.com/products/skin-care/sensi-care/sensi-care-sting-free-adhesive-releaser-spray/p-609e1b05-269d-4dfb-8ca6-711554d3629b/3_0022/)
Hope this helps!
My wife suffers from several leakage problems a day. She has frustrations with it. nothing seems to work, but we’ll try your suggestion. She needs to have a good uninterrupted night’s sleep. Thanks.
I hope your wife is having better success at managing her leaks. Lyn’s suggestion about heating the wafer is a good one. Also, if your mom already has some really raw, weepy skin due to the leaks, I have heard very good things from a stoma nurse about a product called Marathon. You put it over the raw skin it helps seal it off from any output which allows the skin to heal. I know it can be very hard to get wafers to stick to weepy irritated skin!
My Mom was also plagued with frequent leaks. A ostomy nurse suggested we take a ziplock bag, place a washcloth in ithe ziplock, pour in water heated in a coffe maker, just enough to wet the washcloth. While preparing the ostomy site, lay the ziplock over the wafer, after sizing the hole, but still with both protective sides on it, while cleaning and prepping the abdomen. The wafer begins to melt somewhat and sticks much better. Be sure it is not to hot to the touch before placing it over the stoma. Also have your wife lay or sit for a few minutes before getting up to allow the wafer to adhere well before moving about. This helped very well for my Mom as she was having multiple leaks daily and experiencing terrible skin reactions.. From the beginning of following this, she rarely had leaks! A true success that enabled her skin to heal well with very few episodes and she was again able to leave her home and enjoy shopping and eating out without worrying about a leak. Her body just did not produce enough heat to allow the wafers to melt and stick without assistance. Good luck, hope this helps! Don’t give up, keep reading this site, you will find many excellent suggestions!!
Hey, thank you so much for the very thorough post and replies. I don’t have an ileostomy yet but with slow motility and bad ibs/ibd and 10 years of treatment attempts that haven’t helped I’m starting to look into an ileostomy. Leaks are basically the only worry I have at the moment, I’m extremely ocd and to be honest I don’t know if I can handle a leakage situation without having a full blown panic attack. Going into this, is there anything specific I should talk about with the nurse, or any products that you would believe give the best anti leak results on top of the eakin barriers? The whole package? And would you have any tips for a new person to an ostomy, especially on changing it because I would not prefer to need help changing it. 😦
Thanks for writing. Sorry it took me so long to get back. I have not had much time to blog or answer comments this month:(
I completely understand your worry about leaks. That was one of my concerns before surgery too. I remembered imagining how horrific it would be to get a leak in the middle of leading a hike at work. I was so sick of UC though, I pretty much made peace with the possibility and decided to just go for it with surgery. I figured I would somehow handle whatever happened.
Fortunately though… I have not had problems with leaks at all. I got one a couple of weeks after surgery before I knew how to manage my appliance well, and then got one a couple of years ago in the middle of the night when I was testing out a new appliance brand. It wasn’t messy though as my output was pretty thick that night and only the tiniest bit came out. So I have only had two leaks in 5.5 years… both at night. I think the things that have helped me avoid them is that I have a great stoma placement (make sure to work with your stoma nurse to get a spot that works well with where the waistband of your pants usually sits… and one that works well with any sport hobby equipment (climbing harnesses, backpacks etc.))
The other thing that helps is having a fairly flat stomach (which has been a little hard to maintain now that I am healthy and actually absorb calories from my food… I definitely have to be mindful of what I eat so I stay fit.) This keeps the ostomy appliance skin barrier–the part that sticks to your skin–from peeling up (picture trying to get something flat to stick to a round volleyball… it is going to pop up on the edges). Beyond those things, I experimented to find the appliance that adhered to me the best. My favorite combo is the Convatec Sur-fit Natura Durahesive wafer over an Eakin Ring. Everyone has different results with the various products though. Finding the one that works the best for you is just a matter of trying a bunch. It is the same thing with the Eakin Rings, some people have better luck with Hollister’s Adapt brand or Coloplast’s Brava rings.
As far as changing- it is hard at first but you learn how to manage it after a little while. I was completely overwhelmed and I can remember crying with frustration when changing mine at first. I certainly could have done it on my own, but my hubby had to help me just for moral support so I didn’t freak out. My biggest issue was that I was obsessed with getting it perfect. I thought that if I had even had the tiniest bit of skin exposed next to my stoma, the output would eat into my flesh almost instantly. I soon learned that this wasn’t the case. Sure- you want to protect your skin, but a little mistake here and there wasn’t going to spell doom for my skin. At least for me… as long as I change every three to five days, my skin irritation is pretty minimal. Anyway, it just took a while to get confident with everything. Within a couple of months I was a pro at changing and no longer needed help.
If you still haven’t had surgery, you could try getting an ostomy appliance, filling it with applesauce and sticking it on your stomach (usually roughly a couple of inches to the right and a little lower than your belly button). It will give you an idea of how it feels to have a pouch on your belly. You can also see how it works with your clothing. I did this before my surgery and realized that I could barely see the pouch under my clothes. It helped me feel better about my decision.
I hope some of this helps! Please let me know if you have more questions.
I’m definitely not OCD but expect to be able to do something right and control things which is similar. I was amazed at how hard this all was and still having leakage problems (and reading every word of this blog). I only had constipation but that led to other problems and the ileostomy was the right choice for me. There is definitely a relief to having it done but in my case having to change the bag daily is a time sink and a worry. My skin may be more slippery (genetic condition called Ehlers-Danlos) than most folks and with a dent (divot?) on one side, I can’t seem to get a good seal. I’ve only had maybe 3 comfortable days in the 2 months since my surgery. Can it get worse? Sure – at least my skin is staying almost okay now. Should this all worry you? I think not. You are more likely to hear about folks who have problems than the ones who don’t. My leaks are minor – and handleable in that I get a good seal on the outside flange and leaking only affects my skin – it doesn’t run out and cause embarrassing problems unless I just do it wrong (happened only once like that). So what I’m saying this simply may be less of problem than it sounds like. Don’t let any of this stop you and the most important thing to remember is that everyone is different and needs different approaches, procedures and products.
Thanks, Heidi, for a great blog and all the great information. You have really helped me feel like all things are possible. I don’t want to go mountain climbing (well, I do want to do mountain hikes again) but you are a constant model for ostamates everywhere. Keep it up!
Thanks for writing. I am glad the blog has been helpful, but so sorry to hear you are dealing with leaks! It can be so overwhelming:( Hopefully with some more product experimentation, you can find something that works. One product that some ostomates and WOCNs at my monthly ostomy support group have been raving about lately for stopping leaks are Hollister’s soft convex wafers. I don’t need convex and have been happy with my flat Convatec wafers, so I haven’t tried them. However, they may be worth a try for you. https://www.hollister.com/anz/files/pdfs/HL593_Soft_Convex_Product_Brochure.pdf.
Dang, that was timely! I was about to call them anyway. I didn’t know about that. It turns out I do have a hernia so that might actually be what I need! Thanks!
do these cohesive slims go bad
According to the Eakin website, the rings do not expire and the date stamped on the box is a manufacturing date rather than an expiration one. I have used rings that are a couple of years old (sometimes I find one that I squirreled away for a while in one of my many ostomy traveling kits) and they have worked fine. Here is a link to the Eakin Frequently Asked Questions web page where I found the information:
my issue with it leaking is because my stoma hardly sticks out at all. It looks more like an inny and so it sits flat on my tummy and when it sucks in, its below the wafer and then for sure it leaks even under the ring if I use one…..
Have you found any solutions for managing your innie stoma since writing? As my stoma is more of a longie, I don’t have too many suggestions other than hearing from others that convex wafers can help (which you may already be using). I know some ostomates from my local support group really rave about the Hollister Soft Convex appliance systems for this. One other product that I have used that may help are the Coloplast Brava Protective Sheets. You cut a hole in the square sheet the size of your stoma, place the sheet over your stoma and onto the skin (you could even then put an ring on top of the protective sheet) and then put your appliance wafer on. The sheets are made of a material that gets a bit gummy underneath when it exposed to output, so it may help prevent or at least slow down leaks at the skin level. Coloplast will send out free samples (though the sample square sheet they send seems huge compared to the 4×4″ size that comes in the regular package that I get from my supplier each month).
I hope this helps!
Do you ever have the problem of the back and front of the pouch sticking together as the barrier ring disintegrate/get old etc…..I just started using one and thats the problem I’m having. I am wondering if it the product line problem or is this something that just happens.I haven’t tried the Brava yet.
Yes! This does happen to me with all brands.The ring melts and residue adheres to the inside of the bag and causes the front and back to stick together, However, I just pull on the outside of the bag and try to separate these layers. Another option if this is preventing output from flowing to the bottom of the pouch is to pop the pouch off and try to clean the melted residue off the pouch and then snap it back on.
Most of the time, just pulling on the pouch to separate the layers is enough. Also, even with the residue stickiness in the bag, my output can still flow and reach the bottom of the pouch so I don’t worry about it too much. It is much more important to protect my skin, and the barrier rings do an amazing job of that.
Item # RRSNS80792
Item # ZR1OZOPA
I have had this thing that For 3 years now !!
shits all over me all the time!!!! Out for dinner out to meet friends
out to shop and so on…. I have came up with a way that works for me!
Take shower with out your bag !!! Then Dry off and put on a light
Spray Item # RRSNS80792 then put on the Powder Item # ZR1OZOPA
WITH a powder puff… Then put a very small mist of spray on the powder.
Get a napkin or toilet paper hold it on that THING ( Stoma ) till the outer
layer of spray dries.. then get back into the shower and use warm water
to clean off allthe powder and spray.. Get out of the shower and dry off
and make sure your stoma area is dry then put on new supplys..
I am so glad you found a technique that works. Thanks for sharing your ideas!
Heidi I always look at your ideas and then searched until I found what worked for me. Then I found the Stealth
Belt and it was so, so helpful in keeping my seal tighter longer and everything in place. I had a flat stoma and a convex spot so it made things miserable to say the least (making it impossible to keep my appliane on for more than 24 hr at a time. It took a lot of different product trial before I found what worked, then with a lot of luck I could possibly get up to 4 days on a good week. I had my ostomy reversed at the insistence of my DR due to health issues. But know am having the same problems arise that led to my ostomy in the first place. For me having my ostomy was very do able because I felt so much better. Some people just don’t understand that.
Hello again! I just read your second comment and it sounds like you are having some issues after the reversal. I hope things are going more smoothly in the month since you wrote. I have heard awesome things about the Stealth Belt, but never tried it. It looks like one has to wear a pouch horizontally with the belt, and I like wearing mine vertically. My output is watery a lot of the time so I like having it drain towards the low point in my pouch. I am glad the Stealth Belt worked well for you. Figuring out one’s favorite supplies takes so much trial and error. I love those moments when I finally find a supply/tool that makes a huge positive influence in my ostomy management. Take care and I hope things are improving for you! -Heidi