Stupid leaks.. aaaggghhhhh

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Ironmum
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Date Joined Oct 2010
Total Posts : 776
   Posted 8/4/2011 12:37 PM (GMT -6)   
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 shocked 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
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

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 8/4/2011 1:33 PM (GMT -6)   
Hi Sarah,
at 4 weeks, your stoma is changing size, shrinking. Evryone has leaks a lot starting at about week 3. sometimes I had 3 leaks a day. It drove me nuts and made me feel like I wuldn't b able to live my life. The leaks tapered off at about week 6 or 7, but would happen about once weekly up til a month ago or so. I'm exactly 4 months post op.
The reasons for the leaks after the stoma finished changing size, is that my stool became so thick that it pancaked up against the bag and liquid would run out into the seal. It could also happen if I was wearing clothes that were two tight.
What I've doing now is buying panythose that's really too big for me, drinking buttermilk and also taking lactulose, which is a strong stood softener. I haven't had a leak in over 4 or 5 weeks, and I go out and live life confidently, carrying supplied with me of course just in case.
The bag system that works for one person won't necessarily work for another, you need to find the sytem that works for you. I've been using a coloplast convex light with Eakin seal. It works perfectly for me. You might try convex light, call hollister or coloplast and ask for samples. They usually send about 10 of whtever you want to try and it's a great way to find out if something works for you before getting stuck with a month supply.
Everything around the stoma is going to heal, just give it a few more weeks.
Hope this helps!

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 8/4/2011 3:36 PM (GMT -6)   
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.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 8/4/2011 3:38 PM (GMT -6)   
Hi Sarah,
I tried to reply to your blog where you mentioned this, but I am an idiot and couldn't figure out how.

I was going to say the same thing...leaks are so common at the beginning, a) because you're just figuring out what will work for you and b) because when you DO find something you like, your stoma is still shrinking!!

After about 6-8 weeks, your stoma should finally be a consistent size. I would suggest trying as many systems as you can; what works for you might not work for someone else and vice versa. I would sugest trying a convex wafer and maybe using a belt for now to try to prevent leaks. I ahve heard of a lot of people saying that tighter clothes cause pancaking and thus cause leaks. Just something to be aware of for now, until your swelling goes down.

You are doing a good job of staying positive and thinking about the big picture...try not to let this get you down. You are only 3 weeks out! I have been there and I know how frustrating and exhausting leaks/worrying about leaks can be. But all I can say is try to be patient and just keep trying new things. We are here to help!!
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 8/4/2011 4:11 PM (GMT -6)   
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.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Daffodil
Regular Member


Date Joined Nov 2010
Total Posts : 90
   Posted 8/4/2011 4:36 PM (GMT -6)   
Dear Ironmum,

I think you are in that yucky place I was for awhile. I had my surgery on March 25th, so I am still new at this... It seemed I had leaks as often, and just like you. I PROMISE it does get better. I am 52/F and it seemed to me that life would NEVER be the same...but now it is SO much better, in many ways. I am still trying to decide which type bagging system I like best, whether one piece or two, filter or not, etc. it just take time to make it right for you. We live in an instant gratification age!

Email me, if you wish...I am in Mississippi, where it is very HOT...I have a pool and enjoy swimming. No problems with the bag, and the pool is shaded and cool!!

You will fine many sweet, fine people here!!

Fondly,
Mollie

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 8/5/2011 5:47 AM (GMT -6)   
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 - 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

Lovetoski
Regular Member


Date Joined Jul 2011
Total Posts : 128
   Posted 8/5/2011 6:25 AM (GMT -6)   
Hi Sarah, I'm using salt's aloe vera bags too and noticed that the backing is getting soggy after 24h wear and as I was quite sore around the stitches, I changed every day. I also believe they also don't do very wellin the shower, turning very soft. Had an appointment with my SN today, she remeasured my stoma and it shrank quite a bit. Hopefully she'll be able to help you too.
38 yr female living in the UK, originally from Austria
diagnosed in 2002 with Crohns which has since spread throughout the large colon and to the rectum; meds: Pentasa and optional Pred until Aug 2008; now on Humira, temp ileostomy on 7/19

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 8/5/2011 8:14 AM (GMT -6)   
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.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 8/6/2011 5:09 AM (GMT -6)   
Lovetoski - you're right those salts bags do go soggy! and I don't like the fact they're clear - bleugh! and the other day I had a leak, got it all sorted, got a new bag on then noticed there was a tab missing from the bottom!!! aaagghhhh! so had to do the whole thing all over again.

I guess it's a case of trial and error and finding a system/products that works and you can trust.

Just went for a bike ride and tried the hydro seals - wow! they're brilliant. I wasn't having a leak or anything, but felt so much more confident. We're off out for the day tomorrow to a wildlife park so will put some on for a bit of peace of mind!

I think convex might be the option.. will give it a try. You're right stephanie, it's not a big deal really - not compared to leaks!. If you don't mind me saying, you have a wonderful wisdom and attitude far beyond your years - just reading some of your other posts. Thanks for your comments and support :-)

Will keep you all posted. Thanks so much for all your advice xx
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

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 8/6/2011 6:27 AM (GMT -6)   
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.
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Post Edited (Blueheron) : 8/6/2011 6:33:56 AM (GMT-6)


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 8/6/2011 8:24 AM (GMT -6)   
Thanks so much for the kind words, Sarah! I feel like being as sick as I was for as long as I was helps in my positivity, and also you do have a lot of time to gain perspective about the world all those days sitting in the bathroom or laying in your bed because you don't feel well enough to get up. ;)
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 8/6/2011 1:42 PM (GMT -6)   
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!
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

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 8/6/2011 2:01 PM (GMT -6)   
This is the stuff Blueheron was talking about.. It is available in the UK. Will see what nurse has to say. Many thanks
Sarah
http://www.molnlycke.com/Global/Wound_Care_Products/UK/Product%20Sheets/Advanced/Melgisorb.pdf
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

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 8/7/2011 8:31 AM (GMT -6)   
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.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 8/11/2011 4:52 AM (GMT -6)   
So.. have seen my stoma nurse and have sorted the leaks - thought you'd like to know what I was doing wrong!

The leaks were caused by 2 main problems - 1. Plastic spiky stitches around the stoma and 2. I was cutting the hole way too small and pinching the stoma (poor thing!)

Because the stitches were so sore and I had this trench around the stoma the nurse initially told me to cut the hole tight to the stoma to cover the stitches, trench and sore area. I.e. NOT flush to the skin. This was causing the output to leak under the wafer and the stoma to get pinched.

So she cut my stitches out (ouch!) and we cut the whole about 10-15mm bigger!!! so it sits on the skin rather than on the stoma... its seems to have worked.

And so far.... NO leaks! hurrah. I even wore those lovely comfizz pants and didn't get a leak :-)

Keep your fingers crossed!
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
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