@squeakyandliza

Hi Liza,

I am sorry to hear of your difficulties. Have you tried getting in touch with your stoma nurse? Usually, he/she is the one who knows your situation almost as well as you and can come up with some solutions. Meanwhile, keep focusing on the positive. I know it can be hard at times, but it is half the battle. I am glad that you are finding an optimistic view with  Covid - it's a good example to us all! I'll be praying for you.

God bless,

Stella

Hi Liza,

As one who also suffered with an open wound for 2 1/2 years, I understand your joy at the possibility of it finally starting to heal. Good for you - I hope it will continue on that trajectory. In a year from hell - 2020 - you have something to be grateful for.

 I don’t know anything about your ostomy situation, but perhaps with everything you’ve been through lately, your stoma, or the area immediately surrounding it has changed shape slightly. Is that a possibility? Are you wearing a convex flange? I found that leaks stopped entirely when I moved from a flat flange to one with light convexity. Just a thought.  All the best.

Laurie

@sjlovestosing

Thanks Stella. I haven’t been to see the stoma nurse lately, but have several times over the past couple years, and I have stumped them. 😂 We have tried so many things to stop the leaks. I was doing pretty well changing every other day until a week ago. I think I will call them Monday and see if I can schedule an appt. Good advice, Stella. 😀

@tigerlily

Hi Laurie. A convex flange is a super suggestion, but unfortunately I am already using a deep convex flange. My stoma is pretty flush with the skin and has a bit of a “moat” around it, so I definitely need the convexity. When I had surgery in October, the surgeon was going to see if she could “fix” the stoma because I had a mucous fistula on the side that we thought was contributing to the leaks by having stool sometimes coming out a small second hole. Well it turned out to be an abscess, rather than a mucous fistula, so she put a drain in for the abscess and wasn’t able to revise the stoma. 

Nothing about my situation has been “normal” or easy. 😕 Luckily the people I have found here, and a loving and supportive husband, keep me going. 🙂

@squeakyandliza

Sorry you're having so much trouble. I hope things improve.  

Hi Liza, when we have a leak it’s always easy to rush the change. When you remove the wafer have a good look at where it failed. Take your time, clean and dry strip back to the bare essentials. Warm up the wafer get that adhesive working. If your hubby is willing get him to help. You will see better days 👍

Hey Lisa...I agree with John...going right back to the basics has to be done once in a while. I have had to strip off what I thought I had gotten off of the Barrier Spray using many Adhesive Remover Wipes & spray to accomplish it. ? (I had no Stoma nurses. The nurses in hospital only used maybe two or three wipes when they changed my pouches from leaks, I thought it was enough after I got home.)  One day, I used them till my skin actually squeaked (shout out to squeaky here...lol) beneath the wipe as I wiped it! After that, no more leaks. 

That is untill recently...I have had three in a week.  I am still paying exact attention to skin cleaning as above.  I started having issues with my pouch Hollister 8331 about three months ago. A very noisey rattle beneath my clothing.  BEFORE LEAKS,  I  had been receiving a different  pouch. Instead of being opaque and quiet it has been clear and noisey! I kept thinking it was pharmacy ordering error & asking the pharmacy to make sure they ordered the opaque pouches not the clear. They suggested I call Hollister so..I did...they told me the supplier for the pouch I prefer has been  because of  COVID19,  the company can no longer get the opaque material  from the supplier.  So know I have to wonder if my leaks are because of being back to using the noisey clear pouch. I had leaks often with this pouch so who knows what they have gone back too to keep pouches coming to us!!! Are the weeks the same I have to wonder?

ERIC SIR....have you anyone on the inside at Hollister  that might tell you?? 

Liza, I'm overjoyed to hear you may see the light at the end of that  tunnel!!! Pun intended! lol! 

Posted by: @squeakyandliza

For the last week, I have had a breakdown of my appliance every day, and twice on Tuesday.

I don’t feel like I’m doing anything different, so I have no idea why it is happening.

This would be frustrating for sure. Even under normal circumstances, having the wafer break down that quickly would not be fun. 

What's the product number of your wafer? Is it extended wear?

And congrats on your wound! It's amazing and pretty wild how wounds can stay open for months or years - my butt wound took years to fully heal. Good luck!

@veganostomy

Hi Eric,

I am using Coloplast 16961, Sensura Mio Deep Convex. I do not believe they are extended wear. 

I have a crease in my skin, especially when I bend over, which I think is from all the scar tissue around my tummy wound. I have had pretty good luck with paste until about a week and a half ago. I have tried both rings and paste the last 10 days and neither is working right now. Somehow a bit of output works its way under the paste or ring and that breaks down the whole thing. It also doesn’t help that my skin doesn’t nicely come up against the stoma. There is a bit of a gap. 

Thanks to everyone for the encouragement and suggestions. I am trying them all.  

Liza

I have an uneven stoma half raised and half depressed and the bottom of the wafer goes over a skin crease. I tried a convex flange that just pushed the bag over from the top effecting the dip below causing increased lifting of the wafer below the stoma.

If nice and warm the edges would lift and re-stick in a more uncomfortable position ouch, ouch and more ouch! Cutting the wafer in a flower shape helps with this reducing rucking and lifting.

I tried paste, sticks and seal none really worked -if only the did a really ultra thin seal

fortunately I have colostomy so less liquid I have reverted to a flat seal and clean under where the wafer lifts with a cotton bud and wetted facial pads best result so far:

My conclusion for you:

Is the glue lifting and resealing causing rucking -body temperature near stoma.

Aging of the wafer heat and ph of output

Has the stoma changed in someway/ dry skin (flaking)/ scar tissue/ post op?

my marigold cream has helped heal and moisturising the skin around the stoma better than anything else.

hope any of these ideas help

@chrisandbagpus

Hi Chris,

Thank you for your response. It sounds like we have some similarities. I forgot about your trimming your wafer into the flower shape. I will give that a try. I don’t think mine is lifting, but just the stiffness of the wafer might make it less flexible to move with me, especially while bending. My skin is also very sensitive to adhesives, so between my ostomy and 2 1/2 years of various adhesives on my wound, my skin is very angry. My ostomy nurse recommended a lotion to is not supposed to affect adhesion but it made my skin very red and itchy. I will look back for your post on your marigold cream. 

I know the more fluid nature of ileostomy output isn’t helping. I have some gelling pouches. I don’t like the idea of ingesting something to affect the consistency of my output. But I know other ileostomates figure this out so I know I can too. 🙂

Liza

I tried the convex but your right it is stiffer and if you look closely you'll notice the wafer has a thicker section just outside of the coupling ring. output causes this to be less flexible over time and because of the uneven surface can wrinkle. the other thing is if your moat around the stoma changes in say moatness then the flange lifts and allows output under speeding up the breakdown of the flange( less flexible and adhesive balls up lifting) cutting the flange allows it I find to follow the contours, which for me changes throughout the day depending on my activity and how warm my body gets. Certainly sore and air starved skin, on top of the trauma its been through will have difficulties. 

My marigold cream is marigold (Dried calendula/marigold petals), bees wax and almond or olive oil quite simple and for some people none allergic. there's a number of youtube sites on how to make it.

Or weleda calendula cream is a good possible alternative

Posted by: @chrisandbagpus

 the other thing is if your moat around the stoma changes in say moatness then the flange lifts and allows output under speeding up the breakdown of the flange

Chris, I love that not only did you use the word moatness, but also that it made perfect sense to me. 😂

I don’t know if it is caused by the flange lifting, but output getting under the flange and paste/ring is exactly what is causing the problem. I can see that when I examine the flange after removing it.