Stupid leaks.. aaaggghhhhh

Sorry me again!! Yet again I'm after your collective advice and expert knowledge...

I'm almost 4 weeks post surgery. I have a nice spouty end stoma and am feeling fantastic. Eating pretty much anything and feeling really full of energy and doing great.

BUT I'm plagued with leaks. It's really starting to p*ss me off. I'm lucky if I get 36 hours out of a pouch and often I'm having to change after only a few hours. I've had a loop ileo before and didn't have these problems - one leak in 3 months. I've already had 5 leaks in 3 weeks.

Firstly there are 2 main problems:

1. I have nasty plastic stitches around the stoma - about 8 of them. They stick out, hurt and are very irritating! my SN says they'll fall out in 6 weeks. I actually just took a pair of scissors to the ends and trimmed them probably not a good idea, but they were really really annoying. Hoping that might help.. it does feel a little better already though.

2. The stoma has a weird sort of gap around it, a sort of bumpy trench which isn't flush to the skin. I am cutting the hole in the wafer to sit tight around the stoma to try and cover this area, NOT flush to the skin if that makes sense??? I'm also packing the gap with orahesive powder which seems to help.

It seems to be worse if I wear anything tight. I'm not talking corset tight either, but just a simple pair of leggings or those lovely comfizz pants. It's almost like it forces the output under the wafer rather than into the pouch. I'm of a fairly normal weight and my stomach doesn't have any creases or lumps that would affect the wafer.

I'm using a one piece drainable. It's a UK brand I think .. Salts?? with aloe vera in the wafer. I quite like it overall apart from the fact it's clear (yuk) but it does seem to be more effective than the others.

What am I doing wrong??

This is what I've tried so far:

1. Dansac pouch with the stoma hole at the top. Felt great on and loved the fact it sat low, but it caused awful pancaking and a blockage.

2. Salts Aloe Vera one piece. Hole in the middle works better. Seem to get the most wear out of these, but it just blew today so not impressed. I think I may have cut the hole too small though and it sort of pinched the stoma - does that happen??

3. Convatec with an eakin seal (UK equivalent) underneath. Love the pouch, small thin wafer but leaks have occurred when I've used this pouch.

4. Convatec with orahesive paste around the gap - again nightmare leak.

Has anyone got any ideas or suggestions?? I've got the SN coming next week, but any advice on brands etc would be most appreciated.

Would a 2 piece or a mouldable wafer would be any better?

Many thanks
Sarah x

When I had my recent Crohn's flare my output was like water and loads of it. To stop the leaks I used a convatec mouldable wafer and then useda coloplast seal underneath. When I was changing my bag I would lie down with legs crossed at the ankle and put the seal between my knees to warm up as this makes it really soft and pliable. Then before I put the wafer on I would roll it into a sausage and wrap it around the stoma making sure I have dried the stoma thoroughly first. Next I would put the wafer on (I snap the bag on before I put wafer on) and press down inside the ring through the bag so set the wafer and coloplast seal together.

This worked really well even with the amount of watery output I was producing. The moudable wafer grips the stoma with no gaps and the coloplast seal fills in the gaps underneath and by warming it up before pressing down firmly inside the wafer ring means no gaps for output to escape through.

Now output has settled down I don't use the coloplast seal just the mouldable wafer. I must admit with my last stoma surgery the dissolvable stitches took so long to dissolve that I ended up cutting them out after 5 weeks as they were causing the skin to tear where they were. Afterwards I found out they had dodgy batch of these stitches and that they should dissolve after 2 weeks but I wasn't the only person who had problems.

Just want to second the convex wafer thought. I had leaking problems when my stoma started to shrink, and my nurse switched me to the convex, and that fixed the problem. My stoma is plenty long, and I was reasonably thin at the time, but my belly was a little soft, and the convex wafer just stayed on better. I've been using them ever since.

Good luck.

thank you all.. you are all truly wonderful! I feel so much better now knowing I'm not alone with this

I have spoken to my stoma nurse and she's coming to see me on Tues. She's going to bring some soft convex pouches for me to try.

I think the biggest problem is the gap around the stoma though.. I think it's something called Mucocutaneous separation? I'm not sure if there is an answer for that. Although having now chopped the stitches off it does seem a little better ;-)

What works best at the moment is to pack the gap with powder and cut the hole quite tight to the stoma, but not too tight as that then causes it to push under the wafer.. ugh.

When I had my loop ileo last year I had to go onto hard convex after about 3 weeks and was fine after that, but I'd hoped with an end stoma I wouldn't have to do that. Humph.

Will keep you all posted - and thank you ALL for your advice. You're all just the best. x

Sarah,
I throught I was fine using a flat wafer and TWICE this happened to me: 4-5 months after surgery, my stoma decided she needed a convex. It was pretty annoying as I was hoping to not need one, like you said, but really it's not a huge deal when you think about the bigger picture. I always try to have that in the back of my mind.

I've also had that separation you're talking about. It hurt! I did what you're doing, and it eventually went away.

I had a mucotaneous separation too. I went to my stoma nurse and she gave me this cotton-like dressing made out of seaweed called Melgisorb to pack into the gap whenever I changed my appliance. I never did get to see how it worked because the next day my abdominal incision opened up through the muscle layer and I had to go back to surgery. When my surgeon was fixing that, he also restitched my stoma and it healed perfectly the second time. It might be worth asking your nurse about the Melgisorb though. My nurse said it worked better than stoma powder for that purpose.

Thanks Blueheron - I'll ask about that - I wonder if something similar is available in the UK?. Am concerned it will need re-stitching though as it's just not healing up. The stoma itself also goes hard and tight sometimes too and that's when I get the leaks - I thought this was just normal shrinking or peristalsis, but I'm a little concerned about some sort of stenosis or tightening. Anyway.. will stop fretting and just see what the nurse has to say on Tuesday. Many thanks.

Stephanie - you're right.. I feel like a different person after all I've gone through. It certainly brings a different perspective on life!

Ironmum, they do something similar, can't remember what is it called. I had it when I had abcess in 1995 and they had to resite ileo onto my left hand side of stomach and the hole that was left couldn't be sewn up. Instead they packed it each day with this white wick stuff that was made out of seaweed that 'melted' each day and helped heal the wound. It was taken out each morning, cleaned area and repacked each day. Keeps wound moist and clean to allow healing.