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Bad stoma week - having my first leaks

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Posted 7/28/2016 12:28 AM (GMT 0)
3 months with a loop, zero leaks. First 4 months with an end, zero leaks. Now month 5 just this week I started having small leaks that have now progressed in to major leaks. I have changed my bag 3 times since Sunday. I'm used to going 4-5 days easy between changes.

I'm just really frustrated. I'm pretty sure it is from my weight gain which is frustrating me even more! My stoma looks a little different in the last month or so in the way it lays and points which I am hoping is from my little belly!! Which I am trying to flatten at the moment!

Anyone's stoma still changing after 4 months?
Posted 7/28/2016 12:38 PM (GMT 0)
what appliance are you using? Convex, flat?
Posted 7/28/2016 2:14 PM (GMT 0)
huh... I get it, the leaks are frustrating. I went for like a year with none,then suddenly, they happened here & there, for various reasons. It does sound like weight gain may be an issue- you could try the convex wafers, call & get free samples. That should make it point out more, into the bag. Where exactly are the leaks happening? From the same spot under the wafer, or ??? Are you changing because of the leaks? Do you use any barrier strips or spray? Powder?? You could try the less is more route- just use a wafer with nothing underneath, really seal it onto the skin. This will pass too- there was a point I had like 2-3 leaks in a month, & I was pissed! But things shaped up,f or no apparent reason! Could it be the heat and/or humidity? Not sure where you are, but it's been HOT & humid in New England.
Posted 7/28/2016 2:48 PM (GMT 0)
I use flat. I don't think I would like using convex because when I use a barrier ring I feel like I get kind of a light convex effect and I don't like it. It makes the stoma stand up too much.

I was using only my flat wafer and paste. Pretty simple. Then when my tummy wasn't quite as flat it seemed like I would see little leaks at my changes in 2 spots so I started using the barrier ring. However my 2 biggest leaks have been with the ring. My stoma sticks out more when I use nothing. Both of the big leaks come out by my belly button where my seal isn't as good now that it isn't totally flat there.

I think it just frustrates me bc I felt like I had my system and I'm getting ready to do a lot of travel. 3 different trips so it has rattled my confidence about leaving home and being at other people houses and public restrooms.
Posted 7/28/2016 3:56 PM (GMT 0)
With my first stoma, which was an end and plenty long, I had to switch to convex when I put on a few pounds a few months after surgery (after being super skinny when I was very sick and had the surgery) -- works better on a soft belly. Then when I got my new stoma, I had to completely change everything, because nothing that I used before worked.

It's very frustrating when you have a system down and then it doesn't work anymore. On the other hand, once you've successfully figured out a new system then that gives a certain confidence for the future.

Do you have a nurse you can see for advice?

Also what brand are you using? Some of the flat wafers are stiffer depending on the brand.

But my first thought is to try a convex. When my leaking started a few months out my nurse said it was common to start leaking at that point. A convex wafer is very different from a barrier ring, so I don't think you even know whether you like it or not..... but it's pretty clear that you don't like the leaking.

The other thing to consider is did you get a new box of wafers? It's possible you have a bad batch.
Posted 7/28/2016 4:04 PM (GMT 0)
I would get your stoma remeasured by a stoma nurse, if you have one. It may be that the holes in your wafers aren't quite the right fit anymore - do your wafers come precut or do you cut out the holes yourselves? I was lazy, so I went for the precut option, but it also meant that the holes were always exactly the same size. However a few months after my operation my stoma had shrunk and a new measurement needed to be done.

It's not the lack of a flat stomach which is a problem. I didn't have a flat belly when I was very underweight, let alone once I put all the weight I had lost back on and then a bit more on top - it all went straight to my belly and breasts. Wafers have to be designed to deal with curves, as most people can't be arsed going down to the gym 6 hours a day to get a flat stomach (although in my case I'm not sure any amount of exercise would work). The hole in the wafer needs to fit around the stoma as closely as possible; the stoma also needs to have a spout and stick out a way.

As I couldn't achieve a perfect fit (my stoma was a slightly weird shape, I think) I had to use barrier seals to fill in the small gap between wafer and stoma. I found the regular Eakin seals too thick though; the slim seals worked better. If you've only tried one brand, it's worth trying one or two others before giving up on barrier seals for good. I didn't get one with one brand, but Eakin and dansac seals were pretty good.

That wasn't quite the end of it unfortunately. The adhesive on my brand of bags started becoming a bit crap and I would get minor leaks after 1-2 days. Switched to coloplast sensura, which finally nailed the leaks problem for good.
Posted 7/28/2016 4:20 PM (GMT 0)
so you see the leaks when you take the wafer off, like stuff oozed out onto your skin, but stayed under the wafer? I cut my own wafers, & alternate between the Eakin rings & Brava Sure-Strips, depends how lazy I feel- the rings are quicker & easier. I don't like that "convex" effect you get with a ring either, sometimes I take off everything & there's a indented ring around my stoma! I don't have a flat stomach myself- I prefer the Sure Strips, cause you can use smaller pieces, & they're thinner. A bad box of wafer sis definitely a possibility- I've gotten bad Hollisters before. And try new stuff entirely- ppl. love the Mio, but every time I use it, leaks... every single time... If your output isn't leaking out from the under the wafer, onto your clothes, etc- I wouldn't worry too much. I see "leakage" under the wafer at like every single change. But my skin is never irritated, it never bothers me, so... I go 7-8 days between changes.
Posted 7/28/2016 5:01 PM (GMT 0)
Blueglass your first stoma sounds like my situation. I was very underweight at my surgery from my flare and previously in good shape before that so my stomach was very flat. I gained 30 pounds and things just don't seem to lay the same.

NCOT, between the beginning and now I have tried 5 different barrier rings. I think my issue is I just don't like them. I'm more comfortable without. I found one, Perfect Choice, that does the job better than the rest but still not a huge fan.

Eva, so my leaks do sound like yours and I never have any skin issues, but it did cause me to start using the barrier ring and the barrier ring is what caused my only major oozing out the side leak. All other leaks are minor and I don't even notice until I do a change. I guess I need to not worry about it and go back to less is more. As long as my skin looks fine it should t matter.

I currently use the 2 piece Mio with adhesive coupling. I am stubborn and this works so much better than all the others I tried that I really don't want to try new bags right now. Convatec do not stay on me and I just all around don't like the Hollister products I've tried. My Coloplast guy did say he had some other ideas from other product lines so I may give that a try.

Thanks for all the feedback. I may just ride this out. See if I panicked too soon because I had yet to deal with leaks. I did check my wafer and it is the same lot as the box before so likely that isn't it.
Posted 7/28/2016 5:04 PM (GMT 0)
Oh and I do cut my own wafers as my stoma is a bit oval. It does stick out well when I wear nothing but the wafer. It doesn't seem to stick out and make its usual spout when I wear a ring and the ring starts to expand a little after a day.
Posted 7/28/2016 7:36 PM (GMT 0)
NCOT, between the beginning and now I have tried 5 different barrier rings. I think my issue is I just don't like them. I'm more comfortable without. I found one, Perfect Choice, that does the job better than the rest but still not a huge fan.

I didn't much like using them and would rather have gone without, but it wasn't an option for me. Every time I tried my skin would end up a macerated mess around the stoma so I soon learnt to stop trying and just accepted I would always have to wear one.

Barrier seals were the only thing I used though, apart from the bags themselves. Used 1-pieces, so there wasn't even a seperate wafer and bag to deal with.
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