Mom’s bag won’t stop leaking

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Punky44
Posts: 303
Joined: Mon Oct 01, 2018 4:29 pm

Re: Mom’s bag won’t stop leaking

Postby Punky44 » Sat Mar 30, 2019 6:31 pm

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.

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

Re: Mom’s bag won’t stop leaking

Postby MissMolly » Sat Mar 30, 2019 6:33 pm

Punky:
I am glad that Lee has posted with her input and suggestions. Thanks for hoping onboard to this thread, Lee.

You can certainly use the Hollister adaptic rings that you have with another competing brand of wafer.

Given that leaks are your mother’s nemesis (and, honestly, leaks are the nemesis of almost every individual with a new loop ileostomy), evaluating other adaptic barrier rings should also be on your list when requesting samples.

Adaptic barrier rings, like wafers and pouches, are not all the same. Each manufacturer has a unique and proprietary ingredient list or “recipe” in formulating their line of wafers, pouches, barrier rings, and skin prep towellets/sprays.

The most popular among the adaptic barrier rings is ConvaTech’s Cohesive Barrier Ring. The ConvaTech Cohesive adaptive ring/seal ranks as the best seller. It is available as a full thickness ring and as a slim version.

Trio is a company that makes silicone-based adaptic rings (as compared to the typical hydrocolloid material) and silicone-based skin care products. Keep Trio Ostomy as another resource in case your mother should develop contact irritation or contact dermatitis of the skin.

You will find that the manufacturers each offer tapes and seals to secure the outer boarder of a wafer. These perimeter tapes are usually shaped like a quarter-moon and are contoured to compliment securing the edges of a wafer.

Most people with a loop ileostomy will need to use a skin protectant. The risk of skin irritation (weepy skin, prickly skin, reddened and irritated skin) is high due to the presence of digestive enzymes in the liquid ileostomy output. You can also ask each manufacturer for samples of a skin barrier/skin protectant. The most popular is 3M’s Cavilon Liquid Skin Protectant. It comes available as a spray and as towelettes.

Just as a point of reference, I wear a coloplast Mio one-piece and rotate with the CyMed Microskin one-piece. I use a ConvaTech Cohesive slim seal and use the Cavilon Liquid skin Protectant. I mix-and-match among manufacturers.
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.

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

Re: Mom’s bag won’t stop leaking

Postby MissMolly » Sat Mar 30, 2019 6:35 pm

Punky44 wrote:MissMolly is this the one you have?

https://www.coloplast.us/sensura-mio-1- ... en-us.aspx


Yep this is the one I have. !
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.

Punky44
Posts: 303
Joined: Mon Oct 01, 2018 4:29 pm

Re: Mom’s bag won’t stop leaking

Postby Punky44 » Sat Mar 30, 2019 6:42 pm

Thank you! I’m ordering samples on the internet as we speak!
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 » Sat Mar 30, 2019 9:13 pm

Punky44 wrote: . . .—if we end up switching to the Coloplast one piece (wafer/bag combo), would we still be able to use the Hollister barrier rings we already ordered?


Short answer YES! I use Hollister rings on my Coiloplast ostomy products. Just so know, Hollister makes two different types of ring. Adapt 7805 which I have been using for years, a thicker ring. And Adapt 8805, a thinner ring which I recently received as samples and will getting more on line.

Good luck,

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: 303
Joined: Mon Oct 01, 2018 4:29 pm

Re: Mom’s bag won’t stop leaking

Postby Punky44 » Sat Mar 30, 2019 9:15 pm

Thank you Lee! What’s the difference between the thicker and thinner? Does the thicker offer more protection?
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.

Punky44
Posts: 303
Joined: Mon Oct 01, 2018 4:29 pm

Re: Mom’s bag won’t stop leaking

Postby Punky44 » Sat Mar 30, 2019 9:18 pm

Another question with the Coloplast Mio—

This video: https://m.youtube.com/watch?v=h4OUavZ3ATU

Do you guys do the step they tell you to do at 1:07 where they say to make the hole into a spout shape? I wouldn’t even be able to mold like this with the current wafer.
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 » Sat Mar 30, 2019 9:20 pm

MissMolly wrote:Punky:
I am glad that Lee has posted with her input and suggestions. Thanks for hoping onboard to this thread, Lee.
Karen


Thank you, I've been busy the past few weeks, Robotics!

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!

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

Re: Mom’s bag won’t stop leaking

Postby Lee » Sat Mar 30, 2019 10:17 pm

Punky44 wrote:Another question with the Coloplast Mio—

This video: https://m.youtube.com/watch?v=h4OUavZ3ATU

Do you guys do the step they tell you to do at 1:07 where they say to make the hole into a spout shape? I wouldn’t even be able to mold like this with the current wafer.


I don't do that. My stoma is bigger and I have to cut the opening larger. My stoma requires openings that are 1 3/4 inch and/or less, thus with Coloplast I cut at 35 which is about 1 3/8 opening. Between my cutting and putting the ring on, no I don't need to do what they did at 1:07.

I have a colostomy, mine is permanent (Barbie butt, rectum gone, all sewn up back there). I believe you and Karen have a ileostomy, thus your situation is a bit different than mine.

Glad you are going to try the SenSura Mio, I really like it ALOT!!! I have been using the same Hollister product for 12+ years, was very happy with it. Hollister stopped making it at the end of last year. They sent me some of there newest line, I was NOT happy, neither was DH. With husband permission, buy as much as you can on line of my discontinued products until you find something that you like. Karen turned me on to Coloplast SenSura Mio. Thank you Karen, I really like it. Sometimes, requesting samples is a great way to find what works for you.

And yes, I have to agree with Karen, sometimes the Ostomy nurses are not always up on how the products work. They promote what ever they are given. A few months back, I went to see an Ostomy nurse to see what was out there. 2 nurses recommended what Hollister sent me, wanted to why I did not like it. I let them know, they both about dropped their jaws, I'm like "am I the only person who has complained about this product?" They response "you are the first person who has used this product long enough to form an opinion." Most patients are in the hospital for a few days, go home and then learn the challenges only after trying to eat something of a normal diet. I would not be surprised to learn what your mom is using is the very product I do not like.

These nurses were interested in what I brought, Coloplast SenSura Mio. Wanted to put it on me and made sure to get all the product #'s. They were impressed with what I brought not the other way around.

Regarding your mom watch her diet, it can have an impact. Again, my situation is a bit different, but if I eat salad greens, I'm going with in an hour, if I eat cheese, it can slow things up, sometimes for days. After a cancer diagnoses, your bowels are not the same, give it time, butt more than likely she has a new normal.

Has she done chemo yet? I have some suggestions there.

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!

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

Re: Mom’s bag won’t stop leaking

Postby Lee » Sat Mar 30, 2019 10:31 pm

Punky44 wrote:Thank you Lee! What’s the difference between the thicker and thinner? Does the thicker offer more protection?


Good question, don't know yet. I've only used the thinner ones once, will be getting more (on line) and will experiment. One of the reasons for seeing an Ostomy nurse, is my skin healthy around my stoma, yes, but the ring (thicker) may be putting too much pressure around the stoma. But the nurses admitted, after all this time, I am doing something right, so keep it up. So over the next year will be trying the thinner and thicker rings. Just to see.

Just wanted you to be aware of these options.

Something else that I do caught the nurse's attention. When I shower, my wafer does not get wet unless I'm ready to change it. I use a hand held shower head and a towel over my wafer and bag, nothing gets wet. They suspect that is why I'm able to wear a wafer for a week at a time.

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!

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

Re: Mom’s bag won’t stop leaking

Postby Lee » Sat Mar 30, 2019 10:52 pm

The last thing I'm going to say, as going to bed soon.

Smith & Nephew No-Sting Skin Prep.

Forget the generic brand preps, forget the wipes, this is a spray, get it. Game changer, at least for me.

Not sure where you live, butt if you are in a major city, look up medical supply store fronts. Places that sell walkers, lift up chairs, electric scooters, and hospital beds, etc. Chances are they also sell some ostomy products. And this Skin Care Prep.

Hope this helps,

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: 303
Joined: Mon Oct 01, 2018 4:29 pm

Re: Mom’s bag won’t stop leaking

Postby Punky44 » Sun Mar 31, 2019 10:30 am

thank you so much Lee!

She’s done 8 rounds of chemo before surgery and we may be looking at 4 more.
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.

Pyro
Posts: 239
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Mom’s bag won’t stop leaking

Postby Pyro » Sun Mar 31, 2019 9:19 pm

Lee wrote:The last thing I'm going to say, as going to bed soon.

Smith & Nephew No-Sting Skin Prep.

Forget the generic brand preps, forget the wipes, this is a spray, get it. Game changer, at least for me.

Not sure where you live, butt if you are in a major city, look up medical supply store fronts. Places that sell walkers, lift up chairs, electric scooters, and hospital beds, etc. Chances are they also sell some ostomy products. And this Skin Care Prep.

Hope this helps,

Lee

What’s it do?
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

User avatar
CRguy
Posts: 9898
Joined: Sun Feb 10, 2008 6:00 pm

Re: Mom’s bag won’t stop leaking

Postby CRguy » Sun Mar 31, 2019 11:12 pm

Description

NO-STING SKIN-PREP is a versatile, alcohol-free, liquid film forming skin protectant which can be used on intact or damaged skin to help prevent irritation caused by:

Moisture associated dermatitis from wound exudate or ostomy effluent
Incontinence associated dermatitis
Caustic drainage from tracheostomy tubes, nutrition feeding tubes, (g-tubes, j-tubes)
Friction in high risk areas:
Bony prominences
Between skin folds
Under oxygen masks, cannula and tubing
Adhesive trauma:
At central or peripheral infusion sites
From ET tubes
From condom catheters
From Negative Pressure Wound Therapy
Around surgical incisions
From tape stripping


basically a NON irritating skin prep (= no alcohol) which protects and seals skin so other items can be used over it as required.

I am a few years out from a 6 month temp ileostomy, so I hesitate to post into a topic where we already have MissMolly and Lee giving you some definitive info .... BUTT ... anything we can do to help ....

I had great ostomy nurses and also some in-home visits. I ended up with a Hollister 2 piece system with a convex flange and detachable pouch.
Later on in the Journey I had a number of rechecks and refits and went from pre-cuts to trimmable flanges as the stoma changed with time. I also had used various powders and sprays/wipes BUTT ended up with the Coloplast rings to pad/cushion the flange and prevent minor leakages ... BUTT always in the same spot ...
SO the ostomy nurses identified an issue with appliance "fit/contour" and changed me around to get things sealed and working without leaks.

Best wishes All
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Punky44
Posts: 303
Joined: Mon Oct 01, 2018 4:29 pm

Re: Mom’s bag won’t stop leaking

Postby Punky44 » Mon Apr 01, 2019 3:43 pm

Thank you!
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.


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