Leaks make no sense!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/20/2011 6:48 PM (GMT -6)   
You know, I'm already having kind of a rough time and in a bad mood because of this dumb Candida diet I'm on for all of these fungal infections under my wafer, and now I've got to deal with stupid leaks too??! rolleyes
 
I shouldn't complain because this is still better than no ostomy...but:
 
I have had a few leaks within the last couple weeks, and the other times I didn't have a leak, I changed my wafer after only two days because I felt a leak beginning. So finally tonight after 3 days, had another leak, and of course wasn't planning to change my wafer, so I was mid-meal (organic chicken hot dogs for this dumb diet...ugh), and of course Zoe was spouting stuff like crazy during the whole change!! ARG.
 
ANYWAY, now that I've ranted...my stoma sticks out a good half inch. During peristalsis she leans a bit to the left, and the smallest she gets is maybe a 1/4 inch but definitely not any shorter than that, and I tend to have leaks on the right. But lately I've been having leaks on  the right and then all over as well. Unsure of why. It doesn't seem that I'd need convexity because of the length of my stoma...right? Or am I wrong? I put a convex wafer on tonight just in case.
 
option #2: I use adapt rings. Should I try eakin seals? Are they different/better? I used to be perfectly happy with adapt because they came off so clean.
 
option #3: I've been using pre-cut 1" wafers since my last surgery (to re-do my stoma in January), and slowly my stoma is getting smaller. Right now I could really use a 7/8" or a tiny bit smaller. Could that be part of the reason it's leaking?
 
Any ideas would be great. This is my second round of all of this leak crap and I ended up having my stoma re-done to avoid this. GRrr!!!
 
Thanks guys; I love that you understand.

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 417
   Posted 7/20/2011 7:16 PM (GMT -6)   
80's chick:

My best suggestion: Orlando Health Wound Center - Ask for Donna (WOCN). Don't have their number now but I believe you can google them...If you need it let me know and I will get the number...Donna made things a lot better with my stoma (even thought I wasn't having leaks), and told me several things I had not been told....

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/20/2011 8:27 PM (GMT -6)   
I have great luck with Eakin Thins and cutting the wafer so it is a bit closer to the stoma. Also I use All Care wipes as a base after I get all the old stuff off and wash with water and dry my skin.

You aren't using a soap with lotion or scents in it before applying your wafer are you? As these don't rinse well like Ivory or Jergens' mild and can make the wafer stick to you less well.

Rosemary

PS the Orland Would Center sounds good. Check that out too.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/20/2011 8:27 PM (GMT -6)   
My stoma is the same dimensions as yours exactly and I don't have to use a covex wafer. Rosemary

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/20/2011 9:40 PM (GMT -6)   
maybe you have a bad batch of wafers?
i think also cut it smaller, i cut mine at a smaller line than my stoma, but since i always get it a little wrong i have some space around, when i was trying to cut it the right size i ended up with too much room!
i use convex ones, thats just what they gave me, and mine is really long and hangs straight down. 
and you know it might just be this super hot weather and all the extra sweating, we had heat index of 105 today, and its going to be 107 tomorrow, so i'm sure its hotter for you.

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 7/20/2011 10:05 PM (GMT -6)   
mine sticks out about like yours does and I had leaks until I switched to convex. no more leaks!
DX 2/10 UP. DX 07/10 UC. Pancolitis. tried: Canasa, Asacol, Bentyl, Imodium, Imuran, Prednisone, Flagyl, Cipro, Remicade, Codeine, Tramadol, Xanax, Morphine, Vicodin, Prozac, ~ nothing worked. 1st surgery 6/8/11! 2 more to go!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 7/21/2011 12:26 AM (GMT -6)   
Convex worked for me when I was having leaks and adding Eakin Seals too. Definitely watch your soaps - I use Neutrogena for Sensive Skin and have since 1984. Keep in mind that when the stoma is active and trying to eliminate, it can receed quite a bit. Mine sure does. Depends on my food intake too. Chin up. It's a puzzle worth putting together and figuring out!
CD diagnosed in 1979. Ileo in 1984. No recurrence of CD! Some issues with adhesions still.
Husband diagnosed with ALS (Lou Gehrig's Disease) March 2008 - taking one day at a time, enjoying our time together.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/21/2011 5:41 AM (GMT -6)   
Thanks all. I just don't want to be forced to use convex...it leaves less options as far as the kinds of wafers I want to try.

I don't think it's anything soap-related...the outside is always sticking great! It's just where the stool has gotten under the seal. Maybe I will try some eakins. I haven't found them in my edgepark catalogue but hopefully they have them.
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!! :)

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 7/21/2011 6:47 AM (GMT -6)   
I would recommend trying the Eakins. I used Adapts and thought I liked them, but found that the Eakins stuck and turtlenecked a lot better for me. The same residue that is a little hard to remove also means that they are sticking really well.

Not sure about the convexity... my stoma is 1.25 inches tall and never retracts at all. During peristalsis it gets longer:) I have used flat wafers from the start.

I too wonder if your extra leaks have to do with the hot weather.
-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

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 7/21/2011 8:54 AM (GMT -6)   
Have you tried the mouldable wafers as they create a really close, tight seal against the stoma and so stop leaks getting under the wafer. I swopped to them earlier this year and use half of a coloplast ring that I roll into a long snake and then put this directly around the stoma after wiping it completely dry and then push the mouldable wafer over the top. Then I press down all around inside of wafer ring to get the coloplast seal to adhere to the mouldable wafer and this works brilliantly. Much more comfortable as well as the mouldable ring moves with you but keeps snug around the stoma.

Sometimes it is a case or trial and error to find what suits you. Get loads of samples and play around with them and if worried about skin irritation issues cut little bits of the wafer and stick to stomach area away from stoma and see if it causes any skin problems after few days.
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 7/21/2011 10:41 AM (GMT -6)   
I doubt it's the weather...last summer I worked outside dancing at Disney and sweating more than is humanly possible, and never had a leak. This summer I'm teaching summer school in an air-condtioned classroom.

Are the moldable ones from convatec or coloplast? I'm severely allergic to convatec adhesives, so I can't try that if that's the case.
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!! :)

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 7/21/2011 12:28 PM (GMT -6)   
The ones I use are from convatec, I don't know if other companies do them as well. Luckily, I'm not allergic to any adhesives I just find that certain ones don't stick to me.
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.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 7/21/2011 1:14 PM (GMT -6)   
definitely use eakin/adapt rings. ever since i started using adapt rings - no leaks (we don't have eakin). another thing is that i also thought my stoma was 32 ml. i havn't noticed it shrunk a little more lately, so for a while i was cutting the wafer too big. that caused leaks. now that i cut it smaller, as precise to the size of my stoma as posible, it works better now.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 7/21/2011 2:30 PM (GMT -6)   
Honestly, try convexity...I was having issues with my 'new' stoma being short and within a few months of using Coloplast's convexity my stoma stuck out about 1" (which was the length of my stoma I had for 8 years that worked perfectly!). I know it does retract during peristalsis and the convexity is the only thing that saves me.

Adapt and Eakin Seals are essentially the same, but our bodies react differently to them. I use Eakin and don't get a lot of residue but have adhering issues with Adapt...you really have to try it to see.

Can you try the convexity inserts instead of changing your wafer? That way you don't have to experiment with your sensitivity problems....just a thought.

Let us know how it goes:)
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/22/2011 5:57 AM (GMT -6)   
Thanks for all the input.

I currently use adapt rings. I will try eakin. I've tried the convex rings and I think they are completely garbage. I don't get how they are supposed to work! They put the hole for your stoma so far up that it's like digging into a tunnel to get to your stoma...looks like a holding receptacle for stool to me and a recipe for leaks.

I guess I can't try the moldable since I'm allergic to convatec.

I have like no hair on my body. I will have to see how the covex ones work.
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!! :)

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/22/2011 6:04 AM (GMT -6)   
I will but as of right now I have a yeast infection under my wafer and I'm not shaving over irritation. Also the only thing that doesn't stick is the leak area. The rest is fine.
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!! :)

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 7/22/2011 9:54 PM (GMT -6)   
Honestly, its probably only leaking because of the yeast infection. When i had a yeast infection with my colostomy, i had to change every other day for almost 2 weeks because the microgaurd (anti-fungal) powder made nothing stick. I leaked quite a few times while my infection was healing, but once I healed my same old routine started working again. If you have enough supplies, maybe you should just plan on changing more frequently while you get the infection under control.

Also, maybe you have lost or gained some weight recently? a few pounds might slip your notice. Have you remeasured your stoma recently? Maybe something changed slightly and your old wafers just aren't the right size anymore.

I feel your frustration! I hope you can figure it out and beat that infection fast!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11
-Takedown 6/13/11
I <3 my J-pouch!

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 7/24/2011 3:28 PM (GMT -6)   
I was using Adapt rings and switched to using paste that I apply myself which helped me a lot. I use a convex wafer not because my stoma doesn't stick out enough, but because my stomach is "soft" (nice way of saying I'm a tad pudgy, I guess!). I hope you figure out what will help. If not, think about a WOCN. Good luck!
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, June 25, 2018 9:13 AM (GMT -6)
There are a total of 2,974,991 posts in 326,233 threads.
View Active Threads


Who's Online
This forum has 161321 registered members. Please welcome our newest member, lowo1.
435 Guest(s), 8 Registered Member(s) are currently online.  Details
Skylark72, GoBucks, KBmom, sebreg, Kat1000, Girlie, Gram214, OriolCarol