Needing some reassurance...

Lo, we all have our challenging moments, and leaks are the worst! It will get better, but you need to get the right combination of products that work for you. Definitely try a convex wafer, for me that rely helped. Also, have you tried using SureSeals or the Brava version (I think it's called the elastic barrier shield, and it comes in half circle shapes that really help me)? If you always leak in the same place, that might help.

Yes, it definitely can get better! Try a convex asap. It's pretty common to have leaks at about the point you're having them. I had this problem, switched to a convex, and that took care of them. My stoma was plenty long too, but my belly was soft (even though I was thin). The flat coloplast can be a problem that way (I was using it too, and switched to the light convex). My leaks were in the same place too.

You might do better w/other brands too. The convatec stick really well, for example.

Another thing that's wonderful is the sure seals. Not sure if they have them where you are, but you can also use tegaderm. They are a clear, breathable plastic that goes over the outside of your wafer and can help hold it down some. If you have leaks, the sure seal can hold them in so that they don't make a mess all over the place. They won't solve the problem, but they can make it less stressful.

Aloe vera powder sounds like a bad idea. Is this something from your nurse? If you have irritation, you can use stoma powder, but only on the irritated part, and you have to "crust" it with skin prep, otherwise the powder can make the wafer not stick and cause leaks.

Do you have a stoma nurse? The regular nurses don't necessarily know how to help you with a problem like this. Do you have a parent or someone else who can help advocate for you to get you the help you need?

You've got a lot on your plate physically and emotionally. Anyone would be upset having leaks as often as you are. Emergency surgery is a huge, huge deal and waking up with a stoma is a big shock. Heck, even a new relationship is very stressful (even if it's wonderful). I don't hear a lot of self pity in your post... you're just coping with a very hard situation. Hang in..... and don't try to make long term decisions when you're having leaks all the time and just getting used to what just happened w/you....

I'm sorry this is such a hard time, but it really can get better.

I think the powder is a bad idea too, that seems like it would compromise the seal. Are you measuring each time? Stomas shrink a lot at first, sometimes day to day.
Also have you tried using a hair dryer on the wafer right after you put it on?
Why don't you post your routine and we might be able to find a trouble spot

After the powder, you should be using a skin prep to crust it up ... The adhesives do not stick to powder at all. Also, you might try using a heating pad and lying still for 15-20 minutes after applying.

Most nurses just don't know what works. Also, most WOCN nurses recommend only waiting a week or two to try a convex wafer. Whether your nurses recommend it or not, I highly encourage you to call for samples from Coloplast and convatec and see if this helps.

My husband's stoma was also flush to his skin and we had a lot of leaking problems at first. Even when we got his leaking under control, he could only keep his bag on for 2-3 days before changing it. He also preferred not to wait. We also had to switch to convex pretty quickly... he also wore a belt while he had the stoma. This helped pull it in more.

We also switched from eakin seals to using paste. He found the paste created a better seal and stuck better. He also would layer the powder with barrier wipes. So, he would put powder just around the outside edges of his stoma and then wipe the barrier wipe over it. Eventually, the skin crusted up. Also,  we realized we were cutting the wafer hole too large (as his stoma shrank over time from the surgery), so we reduced the size of that as well.

I bought him these baby wipes called "Water Wipes". They are purely made out of water and didn't interfere with his wafers sticking.

Hope that helps a little!

Post Edited (Amythyst) : 5/20/2013 4:11:56 PM (GMT-6)

Hey everyone :)

When I say 'wipes', it is like a waffle paper towel I just make wet with warm water and soft gauze as well, the stuff given to me by the home care delivery team.

Th nurses I refer are my two stoma nurses, it just depends who you see and sometimes when I go in they team up as I am the youngest person on their patient list. They're lovely and so knowledgable, but of course they don't have stomps themselves.

I don't use any adhesive remover wipes, just the pelican adhesive removal spray. I have cavilon barrier spray but have been told not to use it until my skin heals...! At the moment I am reluctant to keep using all the powders and seals etc, I'm tempted to just put the cavilon over raw skin so it can heal under that because surely having a slim wafer over the sore skin is exactly the same as having the bag flange?

I managed to get a decent night sleep last night, only woke up once or twice to check it which was bliss - not soooo exhausted now lol!

Thank you for all the replies, so nice to be able to ask for advice and have people agree rather than everyone having a totally different "own way" of doing things.

It's only bad days, not a bad life :)

Lo x

I am also wondering about your nurses insofar as their knowledge versus a WOCN. I am sure they are advising you to the best of their ability but going by the above posts and our experience I think you need what has been suggested too.

My husband started out with a convex wafer from the very start as that is what the WOCNs said he needed. Also if you need powder there is Stomahesive powder or the medicated type Stomahesive powder.

Something with aloe vera in it while it may have healing properties it just doesn't sound like it would be conducive to use under the wafer.

Definitely try a few different products...get samples from the big manufacturers. What the hospital gives you and sends you home with if it doesn't work for you then you have a little trial and error like a lot of us went through. In the beginning my husband needed paste to the right and left of his stoma as he had a crease due to all the weight loss. As he gained weight the crease filled in and he didn't need to use that any longer. But that was the source of leaking for him back then when first recuperating.

This is frustrating for sure and makes one very anxious understandably but I think you need better nursing intervention to help you. Once you get the skin healed up and a proper fitting appliance that gives you dependability you will find you can start to have better days. Hang in there. Use this board and read through a lot of the threads and hopefully you will get some info that will help you specifically.

In the beginning I kept a log of which product he used, with or without an inner seal, with or without paste just to try to track which process gave him the best results and wear time.

For a few months the Hollister New Image worked well until his skin was bothered by the outer adhesive edge. Same thing with a Convatec product. He tried Coloplast Sensura light convexity with NO adhesive outer edge and for about 2 years now that is "THE" one for him. He only uses skin prep spray on dry skin after he showers and dries that with a cool blow dryer and puts the wafer on. He changes every Wed/Sun. He could easily go a full week but he feels this keeps his skin healthy so chooses this changing schedule.

Argh, lost a long post... trying to reproduce it...

It's DEFINITELY okay to submerge your bag and take a bath if you have a good seal. Of course don't do this until at least a couple hours after a change as the adhesive needs time to really bond with your skin. My WOCN (Wound, Ostomy, and Continence nurse) recommended I try a bath before I went on vacation to reassure myself that my system would be fine in the pool (which it totally was). Do make sure that you're allowed to take a bath by your surgeon though. Six weeks is probably enough time but it all depends on the state of any incisions/wounds/etc.

If you call the ostomy supply companies directly they will be more than happy to send you free samples of any and all products. The big three here in the states are Hollister, Coloplast, and Convatec. Hollister in particular has a really cute "welcome" kit for new ostomates with a carrying case for a spare change, scissors, mirror, etc. If you're having specific problems or want to try a specific product, tell them and they will help you get what you need. I'm sure your nurses mean very well and they sound super supportive, but if you are leaking this frequently then something MUST change. Leaks are inevitable and we deal with them and get on with our lives, BUT it's the definition of insanity to do the same thing over and over again and expect different results!

@B'Dereh I am already back at work, 2nd week back.

I had a successful trip to the stoma nurse today, she has put me on to the Pelican convex bag which I am really excited about! Seems a simple enough idea and I can't wait to see if my leakages diminish into oblivion!

Feeling really chirpy today, small things make a huge difference!

Lox