leaky colostomy bag...every day!!!

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maine
Regular Member


Date Joined Jan 2008
Total Posts : 38
   Posted 1/18/2008 4:03 PM (GMT 0)   
confused  the past two weeks i have sprung a leak ...seems like ever since i started iron supplement this happens. i am so frustrated i.m near tears, wil try new type of bag today any suggestions??  diane

justjenjen
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Date Joined Nov 2003
Total Posts : 518
   Posted 1/18/2008 10:35 AM (GMT -6)   
It's hard to suggest something when I don't know what you are currently using. However, if you are using a flat bag I would try something with some convexity. Or try a different brand of bags. Some brands (I'm guessing due to the type of adhesive) did not work for me. If it leaks in the same spot then perhaps you just have a low spot that you need to "build up" with paste or a ring. I hope this helps.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/18/2008 2:39 PM (GMT -6)   
Ditto for me on the Eakin Seals --- they are fabulous!!!! Try the convex wafer too if the Eakin alone doesn't work. Do you know what Eakin Seals are? or Convex wafers?

I went along fine without using either of them for about 23 years and then all of a sudden, something changed and now I have to use both of them. No big deal really -- just a couple of more minutes for the change.

Let us know what exactly you are using and what you have tried... do you use adhesive remover when you remove the wafer? I didn't for about 15 years and then I had to start doing that a few years back. That problem was solved.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


maine
Regular Member


Date Joined Jan 2008
Total Posts : 38
   Posted 1/18/2008 2:48 PM (GMT -6)   
THANK YOU FOR THE ADVISE! I WAS USING A CONVATEC ONE PIECE FLAT WITH PASTE AND OF COURSE THIS AM AGAIN I SPRUNG A LEAK..I HAD A COLOPLAST SAMPLE BAG SO TODAY I AM TRYING THAT...I PUT THE PASTE DIRECTLY IN MY CREASE AT THE WAIST AND APPLIED BAG...ITS 2:45 PM AND ITS STILL HOLDING BUT I HAVE NOT HAD A REALLY GOOD BOWEL MOVEMENT YET, THAT WILL BE THE TEST I GUESS

ALSO, WHAT IS EAKIN SEAL? NEVER HEARD OF IT! PLEASE LET ME KNOW

THANK YOU SO MUCH FOR YOUR INPUT, IT'S NICE KNOWING I'M NOT ALONE

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/18/2008 3:04 PM (GMT -6)   
An Eakin Seal is very similar to the sticky part of the wafer, like on the Convatec system (I use the Convatec 2 pc). BUT it holds much, much better and provides more of a barrier so that the output doesn't degrade the wafter so quickly.

There are 2 types: Eakin Seals and Eakin Strips. I buy the Eakin Seals, which look like a flat round disk, and make my own strips since the only area that really degrades quickest on me is right around the stoma. Think of them as a firm, but sticky, stomahesive paste (if you ever have used that). I simply cut the seals into strips and line the back side of the wafer just around the stoma opening hole. You can also apply it directly to the skin right around the stoma. I find applying it to the wafer better for me. I can also press it firmly against the wafer, esp around the edges of the already cut or pre-cut hole in the wafer to create a really tight seal between the wafer and the Eakin before applying to my skin. Some folks use the entire Eakin Seal by cutting the area that fits around the stoma the same size that you cut your wafer. Eakin Seals come in a small size and a large size. Small being about 3" across from one side to the other, and large being about 6" across. Again, I personally just need the extra help just around the stoma and cutting it into strips works fine for me. I have an ileostomy and I am back to 7 days+ wear time!!

Let me know if you have any other questions. I will continue to watch the forum this afternoon.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 1/18/2008 3:46 PM (GMT -6)   
Hi Diane,
Welcome to the forum. The people here are awesome and always have good suggestions to help you out. The Eakin seals and Hollister Adapt rings have worked great for me. The seals seem to keep leaks to a minimum because they cover your skin so well and fit so snuggly around the stoma. Poo has nowhere else to go but over the seal and into the bag (over the river and thru the woods.....).

Peggy - what is "adhesive remover?" When I change, it seems there's always some adhesive from the seals left on my skin and it hurts to pull it off. How does the remover work and where do you get it? I order my supplies from Byram.

Thanks,
Laura

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/18/2008 3:57 PM (GMT -6)   
Laura,
There are several type of adhesive removers -- like goo-be gone!!!! You know those alcohol wipes that the nurses use for giving injections ---- well the adhesive remover wipes are packaged the same way. about every company makes them. Just clean off the area the best you can without struggling or damaging the skin at all. Then wipe the skin, wait just a few seconds, and I do mean seconds, and the adhesive from the seals will wipe right off. It doesn't even sting the skin in any way. I use a brand called PDI. They are packaged in a pink and white box. And seriously, they are like goo-be gone that you buy in a bottle!!! Just be sure to wash the area well after you use the remover. I use Neutrogena soap.

Convatec makes one called AllKares.  Check with your supplier to see what they carry too.


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


maine
Regular Member


Date Joined Jan 2008
Total Posts : 38
   Posted 1/20/2008 7:27 PM (GMT -6)   
HI PEGGY, LAURA AND STACIE,

THANK YOU SO MUCH FOR THE ADIVCE.. I TRIED ANEW BAG, COLOPLAST ON FRIDAY AND IT HELD UNTIL SUNDAY NOON..I AT LEAST HAD A SATURDAY NIGHT DATE WITH MY HUSBAND, WENT OUT TO DINNER AND A HOCKEY GAME! YIPEEE!!

SO ANYWAY TODAY A PUT ON A NEW COLOPLAST AND THIS TIME A I APPLIED AN EAKIN SEAL
DIRECTLY AROUND THE STOMA FIRST. WILL SEE HOW THIS WORKS

ALSO I AM HAVING A COLONOSCOPY AND GASTROSCOPY ON THURSDAY, THE FIRST TIME I HAD ONE WAS IN OCOTBER AND THE DOC COULD NOT EVEN GET IN BECAUSE I WAS SO INFLAMMED
AND OBSTRUCTED../TWO WEEKS LATER MY COLON PERFORATED AND HAD EMERGENCY BOWEL RESECTION AND TEMP COLOSTOMY...HOPEFULLY HE WONT FIND ANYTHING ELSE!! WILL LET YOU KNOW

I CANT TELL YOU ALL HOW THIS SITE HAS HELPED ME BOTH MENTALLY AND PHYSICALY. JUST TO KNOW THAT YOUR NOT ALONE IS SUCH A BLESSING.. I WISH I HAD FOUND THIS SITE BACK IN OCTOBER WHEN I WAS SO OVERWHELMED, THANKS FOR LISTENING!!

DIANE

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2764
   Posted 1/20/2008 8:12 PM (GMT -6)   
Diane,
I'm glad you were able to enjoy a night out with your hubby without any leaks. You mentioned in your first post that you seem to get leaks after taking iron supplements. Do you think taking iron has something to do with it, and if so, can you stop taking the supplements and try eating a more iron rich diet to see if the problem stops? Just a thought.
 
Laura,
I highly recommend using an adhesive remover wipe when removing the wafer, because it makes it slide right off. I got my first box from a nice nurse in the hospital, and the next box I purchased at a medical supply store for about $15 for 50 wipes. My sister's husband works for Smith & Nephew, which is a medical supply company, and they put two boxes of those wipes in my stocking at Christmas! It was such a nice gift! :-)


Cecilia
 
Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


maine
Regular Member


Date Joined Jan 2008
Total Posts : 38
   Posted 1/22/2008 11:05 PM (GMT -6)   
mad   WELL HI THERE, GREETINGS FROM MAINE !
 
    BAG IS STILL SPRINGING A LEAK EVERY DAY!! HAVE TRIED EAKIN SEAL, DIFFERENT BAGS, PASTE AND NO PASTE, APPLYING BAG STANDING, AND LYING DOWN,BLAH, BLAH, BLAH.
THIS IS GETTING SO FRUSTRATING...PART OF PROBLEM IS STOMA PLACEMENT..I KNOW..ITS RIGHT AT MY WAIST WHERE I BEND, BUT THE LEAKS ARE NOW AT THE BOTTOM OF ADHESIVE STRIP AND SOMETIMES AT THE TOP..NO RHYME OR REASON. I HAVE TO DO A COLONOSCOPY PREP TOMORROW EVENING, THAT SHOULD BE AN UNHOLY MESS.
 
   SORRY TO SOUND SO DOWN BUT I HAVE NO LIFE RIGHT NOW.  CANT GO OUT MUCH FOR FEAR OF LEAKING AS I DID YESTERDAY AT THE DRUGSTORE WHILE TALKING TO A CLERK..HE MUST HAVE SMELLED POOP BECAUSE I SURE DID!  I COULDNT GET OUT OF THERE FAST ENOUGH! WELL I GUESS ALL I CAN DO IS KEEP TRYING AND JUST BE THANKFUL THIS IS ONLY TEMPORARY RIGHT? RECONNECTION SURE SOUNDS NICE about NOW
 
THANKS FOR LETTING ME VENT, NOW MAYBE I CAN GET SOME SLEEP!  HA!
 
  THANKS FOR LISTENING!
 
DIANE

maine
Regular Member


Date Joined Jan 2008
Total Posts : 38
   Posted 1/23/2008 4:32 PM (GMT -6)   
HI STACIE !

WELL I WILL BE TALKING TO ONE OF MY DOCTORS TOMORROW AT MY COLONOSCOPY...I WILL TRY THE ALCOHOL NEXT TIME GOOD IDEA

BUT! THE BAD A PUT ON YESTERDAY IS STILL ON AND NOT LEAKING!!!!
DONT KNOW WHAT I DID DIFFERENT BUT GO FIGURE.I USED THE EAKIN SEAL TOO.

WILL LET YOU KNOW HOW THINGS TURN OUT TAKE CARE! THANKS FOR THE INFO

DIANE

maine
Regular Member


Date Joined Jan 2008
Total Posts : 38
   Posted 1/29/2008 3:48 PM (GMT -6)   
HI ALL!

WELL...HAD MY COLONBOSCOPY, THEY FOUND ONE POLYP BUT OTHRWISE ALL WAS GOOD...........BUT YOU WONT BELIEVE IT....I CHANGED TO A COLOPLAST BAG AND DID NOT USE PASTE OR EAKIN SEAL , JUST SLAPPED IT ON AND GUESS WHAT?? IT HELD FOR THREE DAYS!! WITH NO LEAKS, CAN YOU IMAGINE?
I GUESS IN SOME CASES LESS IS MORE HUH? ANYWAY I HOPE THIS CONTINUES. AM SEEING MY SURGEON NEXT WEEK TO GET CLEARED TO GO BACK TO WORK AND TALK about RECONNECTION
DATE..HOPE ITS SOON WILL LET YOU KNOW.

HOW ARE YOU ALL DOING?


HAVE A GREAT DAY!
DIANE

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 1/29/2008 3:53 PM (GMT -6)   
Congrates on your three day respite! I am glad something worked for you.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 1/29/2008 8:00 PM (GMT -6)   
Maine, I had the same problem with my ileostomy. I've had allergic reactions to most brands and developed problems with leaks. I found out that my temporary loop ileostomy has a distal lumen that is flush with my skin. This is a second opening to my stoma. I've been using Coloplast - two brands that I recommend are Sensura Light Convexity to piece and Coloplast Assura Extended Wear Light Convexity 2 piece. If you're stoma has already shrunk you can get precut ones that are wonderful.

Call Brad Goldsworthy at Coloplast. He is a customer specialist. Toll free: 888-726-7872. He can send you free samples of many of their products. I am amazed at how wonderful their products are. Brad is very knowledgeable. We spoke for a long time. If he asked how you got his name, tell him from Mary Murphy - that he helped me get the Sensura 2 piece system.

Since I am allergic to just about every "tape" out there, I use a product from Welland Medical called HydroFrame® Hydrocolloid Flange Extensions. Copy and paste this website address to learn more about them....
http://www.wellandmedical.com/we/products/Intl/Welland-Accessories/HydroFrame/

Good luck with finding the product that works for you. It can be very frustrating.

maine
Regular Member


Date Joined Jan 2008
Total Posts : 38
   Posted 2/8/2008 8:32 PM (GMT -6)   
HI OHIO

I TRIED THE COLOPLAST ONE PIECE BAG AND IT REALLY WORKS WELL..I ALSO USE AN EAKIN SEAL, SOMETHING I WOULD HAVE NEVER TRIED IF NOT FOR THIS WEBSITE! MY OSTOMY NURSE WAS NOT VERY PATIENT WITH ME AT FIRST.. I FELT LIKE BECAUSE I DID NOT LIKE THE BAG SHE SUGGESTED SHE DIDNT WANT TO WASTE HER TIME WITH ME. THIS AM I CHANGED MY BAG AND IT LASTED 5 DAYS!!! CAN YOU IMAGINE? I ALSO HAVE A TENTATIVE RECONNECT DATE OF FEB 25TH...I CAN HARDLY WAIT...I THINK! THANKS FOR THE ADVICE!
DIANE FROM MAINE

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 696
   Posted 2/12/2008 7:11 PM (GMT -6)   
do the Eakin seals only come in one thickness? it seems when I use them they are too thick and push out on the collar/tape around the wafer sometimes....

I was in Vegas this weekend, and how frustrating, I had to change my whole setup about three times....

didn't stop me from winning 2, count em 2! Texas hold Em' tournaments! heehaw!
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 2/12/2008 8:03 PM (GMT -6)   
Glad Bag, I believe the Eakin Seals only come in one thickness, but you can stretch them out. Try the Coloplast strips. They do not have any alcohol in them and I can usually get by with using 1/2 of one, so they last longer. They are extremely flexible.

Maine, I'm glad to hear the Coloplast brand is working for you. Did you get the Sensura and/or Assura brands? Are you trying a one piece or two piece?

Take care! Mary

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 737
   Posted 2/12/2008 8:57 PM (GMT -6)   
maine im glad u got five days!

u guys...these eakin seals...they have to go under the wafer? like between the wafer and ur skin? or do they go on the wafer like after its on ur belly and b4 u snap the bag on (2piece) ? I'm curious b/c im getting my catheter taken out next week and the ostomy home nurse said i might start leaking. I hope not b/c im finally starting to get used this thing w/out crying...
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 
Temp Ileostomy performed 1/29/08
Still Adusting
 
Healingwell.com has been my Godsend...Thank you


donut
Regular Member


Date Joined Jan 2008
Total Posts : 54
   Posted 2/12/2008 10:50 PM (GMT -6)   
I use the 2 piece convex coloplast with the eakin seal. I was using the paste and got a pretty bad ulcerated area because my stoma is flush with my stomach. My nurse showed me how to apply the eakin seal by pressing it right on my skin, right up against the stoma. Then I press the flange right on top.,pressing it down all along the eakin. My bag then presses on..it is sticky, not one that clicks on like some that I have seen in the catalog. So far in three months, I have not had a leak, even when it gets really full at night. I think that my stomas nurse made a good choice when she started me on the convex coloplast system, so I am staying with it as long as it works so well. Now that I am using the eakin seal, things are healing much better.

JWC
New Member


Date Joined Feb 2008
Total Posts : 10
   Posted 2/13/2008 1:37 AM (GMT -6)   
I browsed through this thread rather quickly... The CN who assisted me had some really great suggestions for my bag leakage since I had an unusual stoma. The convex seal with the waist strap attachment worked best for me. It assisted the adhesive in keeping the bag in place (make it as tight as needed). I also took her suggestion and tried using a product called 'dermaplast'. It is a thin piece of artificial skin you can cut to fit around your stoma. The adhesive seemed to adhere more strongly to the dermaplast than my own skin. The only leaks I ever encountered was during or at the conclusion of a GI prep day - for some reason, this is very common.

maine
Regular Member


Date Joined Jan 2008
Total Posts : 38
   Posted 2/15/2008 7:15 PM (GMT -6)   
yeah  HI GUYS!
 
GOOD NEWS..I'M SCHEDULED FOR RECONNECTION OF COLOSTOMY  ON FEB 25..10 MORE DAYS!
I CAN'T WAIT BUT I'M ALSO A LITTLE NERVOUS.  MY FIRST SURGERY WAS EMERGENCY DUE  TO SEPSIS AND 2 PERFERATIONS OF SIGMOID COLON, DIVERTICULITIS, SO NEEDLES TO SAY I WAS A PRETTY SICK PUPPY. I'M TOLD THAT THIS SURGRY WILL BE A LITTLE EASIER AS I WONT BE SICK TO START WITH..SURE HOPE SO. 
 
     THE POST about WHAT TO BRING TO THE HOSPITAL WAS EXCELLENT! SINCE I WAS ADMITTED EMERGENTLY THE FIRST TIME I HAD NOTHNG WITH ME FROM HOME. YOU CAN BET THAT THIS TIME I'LL HAVE MY OWN "STUFF" HA! LIKE FACE LOTION!
 
   WILL KEEP YOU ALL POSTED ON RECOVERY..ANY SUGGESTIONS ??
 
 
   THANK YOU ALL SO MUCH FOR YOUR SUPPORT AND AWESOME IDEAS!  KNOWING THERE ARE PEOPLE OUT THERE THAT KNOW FIRSTHAND WHAT YOUR GOING THROUGH IS SUCH A HELP.I DIDNT FEEL SO ISOLATED. THANKS AGAIN.
 
LOL   DIANE FROM MAINE

AngMichelle
Veteran Member


Date Joined Apr 2006
Total Posts : 795
   Posted 2/16/2008 4:04 AM (GMT -6)   
Please keep us updated on your surgery. I'm waiting not so patently on my reversal date, and a little curious as to how things go. My surgery was ER too, a bit of a different story but I had NO time to prepare. Oh and the 25th is my B-day and the day I see my sugeron. I"m begging for a reversal date for sure.
Hope all goes well.
Ang
DX-Migraines:PCOS(should have seen this list before!!)
Meds; imitrex inj, stadol ns PRN severe h/a
 ProzAC 40mg, Klonopin 1mg BID , Ambien 10mg
PRN, Pherergan, Actiq 600mcg(fentanyl suckers) for migraine breakthrough pain
 Doing engergy medicine!!!! Psych-K (look it up)
OFF ALL MEDS! AND DOING GREAT. still have h/a's but they aren't ruining my life anymore!
 
May God give you a reason to smile today, an extra reason to laugh, and bring joy to your soul.


maine
Regular Member


Date Joined Jan 2008
Total Posts : 38
   Posted 2/18/2008 12:49 PM (GMT -6)   
  HAPPY BIRTHDAY!
 
 I'LL LET YOU KNOW HOW IT ALL GOES...I'M GETTING A LITTLE BIT NERVOUS, ONE WEEK FROM TODAY. BUT AM ANXIOUS TO GET RID OF THIS BAG! WHAT A NIGHTMARE, CONSTANT LEAKS AND ACCIDENTS I WILL NOT MISS!  HOPE ALL GOES WELL, WILL WRITE WHEN I GET HOME
 
DIANE FROM MAINE

Brewash
New Member


Date Joined Mar 2008
Total Posts : 5
   Posted 3/27/2008 8:48 PM (GMT -6)   

Hello,

I would like to ask a question regarding the HydroFrame® Hydrocolloid Flange Extensions, the member who suggested use of these was Ohio 43.

I want to know if you use this product and does it really work as well as it says on the website.  I have been experiencing leakage problems for the past month and I am at my wits end sad

Any feedback would be most appreciated.  I am really having a problem finding a good adhesive since Hollister stopped making their adhesive.


lynneann222
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/3/2009 7:14 PM (GMT -6)   
Diane, I am new to this website and just read over this forum. First of all, good luck on your reversal. We all know what a pain in the ass this can be. Haha. More seriously, I can relate to how terrible the leaks can be and finding the right product is really so hard. The bottom of my stoma is flush with my stomach and it is hard to find something that will stick there, and the skin around the bottom is red and raw, and it hurts. My colostomy was also totally unexpected, I have a long standing history of bowel problems and my doctor said is was only IBS. I also had a cyst on my left ovary, and asked if the problems and pain I was having could be related. He said no. All of the blood tests for ovarian cancer were negative, and my colonoscopy was normal. I went in the have the "cyst" removed, thinking it would be a simple procedure, and woke up with a surprise colostomy and ovarian cancer. I can relate to the overwhelming grief that we all seem to share. I have just finished my third of six chemo treatments, my hair is gone, and I am afraid to go out of the house for long periods at a time because I worry about leaks. My ostomy nurse is wonderful, and we are working hard to find a solution. I have already gained some good ideas from reading this forum.
Again, much good luck to you on the 25th, and all of you please keep writing. It's nice to know that there are others out there who leak. The pictures of people in ostomy magazines make it look like it was a lifestyle choice. What BS.

Thank you all,
Lynne
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