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?
Sarah - 39 year old mum of 2 boys, runner/triathlete, health and fitness writer from UK
June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp loop ileostomy
October 2010 - Ileostomy reversal - but didn't go well and after 10 months diagnosed colonic dysmotility due to surgery/nerve damage
July 2011 - Permanent end Ileostomy