Source
r/ostomy•
Signild

Ileostomy leaking issues

I've had my ileostomy for around 2 months now, been out of hospital for about 1 month. Used to have leaking issues early on, mostly due to movement, especially laying on my sides.

Over time that seemed to stop being so bad, trying different bags, extra seals etc. Eventually we found something that seemed to work (a convex bag, brava protective seal, and then two outer seals. A banana and wishbone one) - and while in physio rehab for 2 weeks there were 0 issues. For about 2 or 3 weeks since coming home, also 0 issues

However a couple of little wounds have started to appear, and the bag has now started to leak constantly. Either entirely out of the seals, or just a little into the seal which seems to be making the wounds even worse

At this point none of my solutions seem to have worked - I've tried measuring the stoma again to see if it's changed in size, I've tried with and without the protective seal, I've tried with adhesive paste and without it, I even tried a support belt to see if that would help

Today the bag lasted about an hour before I noticed that it was close to leaking, the skin is now very sore and I'm just sitting here with no bag hoping the skin will start to feel better

I've already contacted my stoma nurse but no real help from her yet. Tried to order a sample of a different bag to see if that would seal better, but they didn't even send it. Really not sure what else I can do right now, anyone got any advice? Going to google a bit too but figured I would post this first. Thanks

Just remembered, I've also tried skin barrier spray, some powder that's meant to absorb moisture, and Orabase protective paste for the wounds. None seem to help nor make the bags last longer.

Posted Jun 24, 2021, 1:36 PM UTC

214
pelirroja_peligrosaCrohn's + Ileostomy•

For what it's worth, eakin cohesive rings seem to work significantly better than any other brand of protective ring/seal (both for me and others on this sub). I wish I had more advice! Fingers crossed that others have ideas.

3
riccone•

There are “purple” colored thin sheets Wound Nurse gave me that worked fast and well. Just cut out a piece of the sheet just large enough to cover the sores. Sorry, don’t recall their name. Hopefully your doctor or nurse will know. My point is there are items that will take care of sores under your Barrier.

2
pelirroja_peligrosaCrohn's + Ileostomy•

Probably a silicone sheet! That stuff is amazing.

1
riccone•

Ok folks, I dug through my supply bin. Hydrofera Blue from Hollister.

3
SignildOP•

Yeah someone else suggested these too. Sadly I can't really try new supplies right now unless I pay for them myself which seems like it'll add up pretty fast.

Trying to get my supply situation fixed so I can actually try new bags etc right now

2
pelirroja_peligrosaCrohn's + Ileostomy•

ConvaTec will send you free samples! It's super easy. They'll send you three, which isn't a lot... But it's better than paying! Also some free bags, seals, and wipes.

1
SignildOP•

Thanks for the link :) Sadly it seems to be US only

1
ThinkPositiveBeReadyCat Fur and Coffee •

That looks very similar to the Coloplast rings!

1
pelirroja_peligrosaCrohn's + Ileostomy•

Very different material tho, somehow? I find that the Coloplast rings last 2-ish days but the eakin ones last 4-5 days. ConvaTec bags never work right for me, but I utterly swear by their eakin rings.

1
Lorde555•

Did you try the "crusting" method with the barrier spray and powder? That can work well if the sores aren't too big.

If the wounds are big and/or the crusting doesn't work, then definitely push for more help from the nurse. There is also a thing called Marathon skin protectant which is very good and meant for more weepy wounds, but it's correspondingly expensive (like $10-20 per applicator). That is however usually covered by insurance (if you are US).

Protective rings are also fairly different. The brava one is quite different from Eakin, which tends to absorb more moisture.

3
SignildOP•

If the crusting method is powder followed by the barrier spray, then yes I tried this last night. Bag lasted.. maybe 8 or so hours. Though it didn't hurt at all even when it had leaked, so that was nice.

I'll keep an eye out for those rings as others have also suggested them, though outside of buying them myself I don't have many options right now. The only way I can order free supplies (UK, covered by the NHS) is by phoning a certain company and for some reason they won't let me order online and when I asked for a free sample they simply didn't send it despite saying they would.

1
ThinkPositiveBeReadyCat Fur and Coffee •

Ileostomies tend to be very liquid and the output will irritate the skin. I use a Coloplast moldable barrier ring around my stoma to keep the output from reaching the tape seal. The moldable ring will absorb some of the liquid and keep it from reaching the tape. I DO change my bag every 3 days as that is how long it takes the output to breach the ring and start to degrade the tape adhesive.

There is a thing called Tegaderm which you cut a hole for your stoma and place it ove the skin. It is waterproof and it will act as a barrier to keep output off the skin. It is VERY adhesive and you have to be careful placing it as there are no do-overs.

2
mimi12345or10•

Stoma powder may help sores heal. I find my NU hope pouch with its spongy seal works very well but when I apply I use 3m skin barrier spray let it dry very well then apply pouch. I have a colostomy but have watery output at times and it stay secure easily for a week.

1
SignildOP•

An update to my issue.. may have found the cause. For some reason they sent me 3 boxes of "light" convex bags instead of the "deep" convex bags I was previously using.

Can't really see the difference without directly comparing the two, but I would imagine that's what caused it all. Have a deep convex on now and will update this post tomorrow as to whether it leaks or not

1