Urostomy Bag Leak. Please give us advice. Thanks.

Hello Inspire Members,
My Mom has been fighting cancer since March of 2008. First it was on her kidney so she had her 1 kidney taken out. After 6 months of being cancer free, she had her routine PET scan and it showed that the cancer have now moved to her Bladder. She underwent chemotheraphy which she handled very well and PET scan showed that there are no trace of cancer anymore, but her doctors adviced her that she needs to undergo cystectomy, they said it will give her more chance to really be cancer free. Doctors said that her type of cancer is really aggressive. She does not really want to because just the thought of having a bag for the rest of her life really scares her. But because of my encouragement she went through the surgery last 4th of August. The Sugery went well and she recovered very fast.

Now that she is at home we are having so much trouble with her bag. It always leaks. We have tried so many types of bags and it will still leak. She is so depressed about it and blames me because I'm the one who really encourage her to have the surgery. The WOC nurse told us that it leaks because she has a fold/crease in her tummy because she has a big tummy. We tried putting the adhesive cream and the paste but nothing works. We would change her bag and in just 1hr it will start leaking already. We are also afraid that because we change the bag too often that she'll have very bad skin around her stoma, but if we don't change the bag she'll might have infection on her surgery area where it usually leaks.

We really need help and advice on how to take care of this problem.

Thank you all in advance.

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25 replies. Join the discussion

I do not have any experience with bags yet, but there are many members who do and I am sure they will jump in here. Sorry your Mom is having so much trouble.

Lynda

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I've had the best success using concave hollister flanges. All my best to your Mom and you.

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i also have a "fat belly" and use "sur-fit natura..concatec #413183"
hope this helps
peter

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It is the wrinkles that are posing the problem,,,,,,,try changing it with her standing up,,,easier to flatten things out,,,,once you get it down she won't be mad at you anymore,,,and glad she is cancer free,my husband uses the hollister 8478 one piece,,,he changes it every 7 days,,,,has no problems,,,,,no leaks,,,it is not unsanitary to leave it on as long as it is holding up,,,,try the standing up method,,,,ginger

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The stoma nurse at the hospital that did the original surgery should be called. They see this type of thing everyday and should be able to give you some excellent advice and help. Alos, that way you won't be the center of her anger. Win-Win for everyone.

Tom in Michigan

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I was having a leak problem until I began wearing a belt made for holding the bag tighter. And I got a wafer that was alittle deeper than what I had been using. I hope the information helps.

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Katzwhisker, a member here gave us info regarding the use of the paste some time ago. If you click on the 'Friend' button and request her as a friend, she will be able to give you her remedies for your problem.
I'll try to locate for you the post in which she replied to that problem. But, it may be quicker to contact her by the friend method.
Karego

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I am sorry to hear of your Mom's troubles and glad to see that those with ileal conduits are chiming in with their experience. I hope that one or more of these solutions work for her and that she can get on with living a normal life soon. Best wishes,

JJ

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sending thoughts to you and your mom. I know things will improve soon. You are so good to be there with her, i am sure this is hard on you, but you'll get through.. thinking of you

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Thank you all for your reply! We truly appreciate it. We will try all the advice that you have given us. I know slowly but surely we will definitely find something that will work for her. Again, thank you all. It really feels good knowing that there are people willing to help you even though you really don't know them. It inspires me... so much!!! I will keep you all posted on how things will go.

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I use the Convatec moldable concave waffer-- no rings or other adhesives and no leaks.
You need to get in touch with the Wound Ostomy Nurse ( CWOCN)

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I would also suggest that you call the various ostomy supply companies. All have ostomy nurses on their staff and have faced every problem imaginable. My friend who has a colonostomy was having lots of problems with skin irritation. After a couple of talks over the phone, her problem was resolved and her ostomy nurse did not help her. These companies will also send you numerous supplies for trial without charge if you are having problems. I took advantage of their offers after my surgery and found the one that was right for me.
Nancy

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Hi -
I've found the Coloplast 3210 skin barrier (which goes on under the bag) takes away a lot of the tummy's odd shapes and helps the bag stick better. I've tried everything on the market, I think, and this was a suggestion from the ostomy nurse. Worth a try! And of course it's crucial to hold the bag against the skin with your warm hand for as long as possible (maybe 10 minutes if you're having leak problems) to ensure it sticks. I know how frustrating leaks can be.

Good luck, and keep trying things. There will be one that works for your mum!

Eileen

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Only time I had leaks is when I used the wrong size bag for the stoma. It reduces in size quite rapidly after the operation.
I currently use an Eakin Seal which I can form tightly around the stoma and then an 8483 Hollister bag. After applying, I put both hands over the pouch for at least 60 seconds to make sure of a good seal. I do the pouch changing standing up in the bathroom which may compensate for the regaining of weight lost after the operation.

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Another vote for the belt,,,my husband wears one it hooks on to the side of the bag,,,,it also keeps it in place,,,its about one inch wide,comfortable too.....

ginger

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my guy had surgery June 1st. rest assured you will master this.

with fold in tummy, you must call the stoma nurse and she should immediately come in and remedy the situation.

we had some similar issues, and like ginger suggests, try standing up and after applied - wait 15 minutes with hand firmly and squarely over the skin barrier - NO BENDING - keep to a minimum - that has helped here alot

we also changed from flat to a convex and these were the keys to our success

good luck and as a caregiver, i am sure you are doing the applying - just smile, stay calm, keep mom dry and bite your tongue. i think that mom is probably embarrassed and then comes the frustation - but i promise, soon the smiles will be genuine and it shouldn't take that long - get help fast...

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My boyfriend - who is lying here next to me, says he uses a one piece convex bag with the "sticky ring thing" ... he says he used to leak every three hours but now the bag lasts three days.

The trick is, he says, is just before applying the bag to your body - you should heat the sticky area of the bag with a blow dryer! It works great - it bonds to your skin better.

The doctors kept telling him to get it warm and while he was in the hospital he used the wall lamp - but when he came home, he started to use my hairdryer and loves the results.

We are sorry about your mom's frustrations. The whole thing - yeah Its a rough emotional experience for both of you but just hang in there - and try to be ok with trial and error - - errors are normal - part of the process. Trust us, you'll soon find the best way that works for you.

Love,

daryl and rick

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http://cymedostomy.com/urostomy.html
MICROSKIN pouches
the best on earth

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I have a crease also on the left side of my stoma and I use coloplast strip seal to build up on the area of the seal that is affected by the crease/dip. I also use holister 8486 concave pouch and am good for about 5 days but try to change in 3-4. Make sure that the area is dry where the seal is otherwise you will leak very quickly. I use the holister stoma powder to make sure is dry and put the pouch on quickly before the stoma dribbles urine.
also call your ostomy nurse for help
good luck

Keith in Canada

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Dear friend,
I had problems with leaking initially, however when I changed to the Hollister New Image CONVEX flange the problem ceased. I would also suggest you call the company as they have wonderful staff to talk to. Also, make sure that your skin is perfectly dry before applying the flange. I use an aloe based stoma care wipe, let it dry then the flange. Good luck! Nutritionist Nancy

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