Mom’s bag won’t stop leaking

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Lee
Posts: 5938
Joined: Sun Apr 16, 2006 4:09 pm

Re: Mom’s bag won’t stop leaking

Postby Lee » Tue Apr 09, 2019 10:51 pm

Punky,

How is your mom doing?

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Punky44
Posts: 305
Joined: Mon Oct 01, 2018 4:29 pm

Re: Mom’s bag won’t stop leaking

Postby Punky44 » Tue Apr 09, 2019 11:58 pm

Thank you so much for checking in on us! So after a few days of leaking everyday, we made it to a stretch of three days and this most recent change we made it to four days with no leaks (just changed it because it was due)!! So that was huge.

We’ve been really being careful with bulking up the barrier ring around the leak site and when I put it on her I make her put her hand over it for 10 minutes without moving so it really sculpts to her skin. I also found it helpful to have the wafer tabs at the top/bottom bs left right because it’s easier for me to smooth out loose skin.

I also remind her not to sit all curled up like she usually does and another theory we’ve been playing around with is not letting the bag get too full of liquid or gas bc it could “weigh” things down and loosen the seal.

The really good news is last night and today she started having thicker output (before it was literally entirely liquid..which was heavy.) So I think that’s helped too and we pray that that continues because it is easier to deal with on many levels.

I did request samples from Coloplast—someone emailed me saying they would be in touch but I’m still waiting to hear. I’ll follow up soon if I don’t.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Caat55
Posts: 661
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mom’s bag won’t stop leaking

Postby Caat55 » Thu Apr 11, 2019 1:12 am

Ditto everything said prior by the knowledgeable folks. I have tried all the various styles, find that different ones meet my needs at different times. Did get a skin reaction to one brand but fortunately there are lots to choose from, as we are all different. I got at least 7 or 8 different styles from each of the companies, samples were free and they kept sending more based on my feedback. I found a heating pad worked well to soften up and seal wax rings. The wax rings work with all brands. Changing a barrier every day is pretty hard on the skin. I can get about 5 days to a week and just change the bag as necessary.
Try rice, pasta and potatoes- they thicken stuff up nicely.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

Pyro
Posts: 240
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Mom’s bag won’t stop leaking

Postby Pyro » Thu Apr 11, 2019 8:40 am

And just FYI, the stoma size will probably change and usually require you to start over with a different set of “bag” equipment. And always empty it when it’s 1/3 full, no matter what.
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda, CEA @36, treatment failure

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Mom’s bag won’t stop leaking

Postby MissMolly » Thu Apr 11, 2019 11:43 am

Punky:
There are packets that you can add to an ostomy pouch that aide in changing the liquid ileostomy output to a thicker consistency (like jello), which can be successful in reducing the incidence of leaks. These packets go by different names. Ileo-sorb is one product name.

Emptying and draining the pouch when it is no more than 1/2 full is also key to limiting leaks. Emptying and draining the pouch sooner than later is advantageous.

Adding about 1/4 cup of water to the drainabke pouch before emptying also helps with emptying the pouch completely. You can purchase small personal perianal squirt bottles on Amazon (also used post pregnancy). Open then tail of the pouch, squirt in a small volume of water. Close the tail of the pouch, mix and swish the contents, which will loosen fecal material. Position that tail of the pouch over the toilet and open the tail to empty. You can repeat adding water and shake and mix 2-3 times, as needed.

Heat is key to anchoring the seal of a wafer to the skin. The hydrocolloid wafer has no adhesive or stickiness as a stand alone. A wafer bonds to the skin by a reaction mediated by heat and warmth. Using a hand-held hair dryer to warm a wafer (and adaptive ring) prior to placing on the skin is a good idea. Or using a heating pad after placing the wafer, as was recommended by Cat55.

If leaks while sleeping are a problem, purchasing a wedge shaped head bolster is helpful. Sleeping with the torso of the body elevated at an angle helps keep liquid ileostomy output from pooling around the stoma.

I am glad to hear that the incidence of leaks is less troubling. There is no joy in experiencing wafer leaks.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Lee
Posts: 5938
Joined: Sun Apr 16, 2006 4:09 pm

Re: Mom’s bag won’t stop leaking

Postby Lee » Thu Apr 11, 2019 12:42 pm

A special belt might also help. I have a hernia and I wear a special (Nu Hope) hernia belt that has a special opening that my bag goes through. Hollister makes about a 2 inch belt that attaches directly on to the bag and helps keep in the bag in place. Maybe something to consider. I believe that Karen can also recommend another company that makes belts and a line of clothing.

And yes as others have said, heat is very important in the beginning to get that wafer to stick to the skin. I hear some people use a hot hair dryer directly over the wafer for several minutes. Me I lay down and hold my had over the wafer for several minutes, then I put my hernia belt on.

And yes, do change the bag when it is a 1/3, no more than 1/2 full.

Something else that might help, I don't let my wafer get wet until I'm ready to change it. I generally shower every other day, my skin is happier with that system. When I shower, I use a towel over my colostomy bag and a hand help shower head.

BRAT diet might also help with liquid output. (Bananas, Rice, Apple, Toast).

Did you call Coloplast directly? I did and via that phone call, they sent me samples bases on a few questions, etc.

In the beginning it is a learning curve,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Punky44
Posts: 305
Joined: Mon Oct 01, 2018 4:29 pm

Re: Mom’s bag won’t stop leaking

Postby Punky44 » Thu Apr 11, 2019 5:03 pm

Thank you all for the continuing tips!

Coloplast got back to me and is sending me a ton of samples in the next 5 business days.

The funny thing is their application directions were exactly the opposite of what our ostomy nurse at Mayo told us.

Coloplast recommended putting it all on standing up vs lying down and even more interesting, they recommended putting the barrier directly over the stoma and not the wafer! I’m curious to try experimenting but of course now that the leak issues have gotten better I’m also scared to change it up!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Lee
Posts: 5938
Joined: Sun Apr 16, 2006 4:09 pm

Re: Mom’s bag won’t stop leaking

Postby Lee » Thu Apr 11, 2019 7:59 pm

Punky44 wrote:Coloplast recommended putting it all on standing up vs lying down and even more interesting, they recommended putting the barrier directly over the stoma and not the wafer! I’m curious to try experimenting but of course now that the leak issues have gotten better I’m also scared to change it up!


Experiment by all means, butt here's my problem. I do everything standing up, "facing a mirror" in my bathroom so that I can "see" what I am doing (I have a hernia). A good friend had a temp ileostomy and was told to lie down. She could not see what see what she was doing while lying down, thus her daughter was doing it for her (going to school to become a nurse, was thrilled to be able to do this for her mom). My friend asked me, how do you put that stoma paste on standing up. I relied, I don't because I can't, something about gravity getting in the way. We don't have a mirror above our bed, NOR do I want one there, thus I must stand up when getting my stoma and skin ready for the wafer. With my old supplies, I had tape over the wafer separate from what is around the stoma itself. Thus I removed 3 separate strips. I get my skin around my stoma ready, I put a barrier ring around the wafer (I remove the tape around the hole only at this time).

Once the wafer is on, I go to my bed and lie down. I wait a few minutes for my not so large hernia to go down. I then removed the 2 strips away from rest of wafer and hold my hand over wafer, body heat. After another few minutes, I strap my hernia belt on.

I have to do this myself, dear hubby while supportive, can not go there. When I had a home nurse, I was told/showed to do prep work in from of mirror. With my new appliance, I'm still working on how to apply wafer with a hernia (one strip of tape vs 3 strips of tape).

Find what works for you and your mom. At the end of day, what ever works for her is the perfect fit for her (and possibly you). Again that learning curve.

I hope she gets those new supplies soon,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!


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