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Retracted stoma advice- Leakage

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(@ericamarie94)
Joined: 5 years ago
Posts: 3
Topic starter  

Hi everyone,

My mom just had a ileostomy 4 weeks ago. It was an emergency surgery as her colon became septic. This all happened 5 days after her first round of chemo to treat her lung and breast cancer. She came home from the hospital 1 week ago. In the hospital she had little too no issues with bag leaks however since she has been home it has been constant. She has a retracted stoma. Stoma nurse has come twice and each time after he left, it leaked. Want to know if anyone has any helpful tips and tricks? No stool seems to even enter the bag it just clumps up by the ring and then leaks out right under. Just about always only on one side. Currently were using an oval ring and Hollister bag. Its really putting a toll on her mentally and I would truly appreciate any advice. thank you so much in advance


   
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(@squeakyandliza)
Joined: 6 years ago
Posts: 1025
 

EricaMarie, 

I can definitely relate to what your mom is going through. My stoma is also recessed and I have had a lot of problems with leaking, and therefore some really bad skin irritation. It definitely takes a toll on you mentally!!  What is sort of working for me is a combination of a convex wafer, and then paste around the stoma. It isn’t perfect, but I can usually get a few days between changes. 

I have had the best luck so far with a two piece coloplast sensura Mio with an adhesive coupling. I tried the snap on coupling, but I had an issue of the output getting trapped behind the plastic snap on part. 

If she isn’t using a convex wafer, I would suggest that as a possible fix. A lot of people use a moldable ring, but those don’t work for me, but the paste works pretty well. 

That is so nice of you to try to find some help for your mom. If you or she have any other questions, this site is a wonderful resource with some amazing people. There are a bunch of super helpful videos too. 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1535
 

EricaMarie94...welcome to Vo!  I'm sorry to hear of your Moms situations, and in turn....yours and your families also.  I'm sorry, I  can't advise you based on a retracted stoma but I wanted to  encourage you all somehow.  Please, by all means don't  be a stranger here. It may seem like an endless tunnel but things will get better and with you on her side  she  has a great start! No question is a dumb question, we all know that by experience. It may  take a bit of  time to  get replies sometimes,  but , they will come your way.   Make sure you get the rest and fluids and nutrition that "you" need also & try to encourage fluids for your Mom.

I know sometimes leaks are more frequent once we are home because of more activity on our part. In and out of the car, apts., getting showered,  bathed, dressed, it all makes a difference.   Please allow for patience during this time.  You are on the right track coming here.  Know that we  are here for you also, not just  your Mom,  okay.

All the best, for now....Linda 

Linda


   
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(@john68)
Joined: 7 years ago
Posts: 2057
 

Hi Ericmarcie, Welcome to the forum, As Liza said a convex wafer is a good route, when your Mum was in hospital and having no problems has the appliance changed since being home. There is a solution.

ileostomy 31st August 1994 for Crohns


   
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Tony
 Tony
(@ileostony)
Joined: 6 years ago
Posts: 246
 

Hi @ericamarie94,

 

Just wanted to say welcome and how touching it is for you to be so concerned with your mom's welfare. As Liza advises, the convex wafers have become the first line of defense for retracted stomas in combination with something to protect the skin from what stool does get caught up around it. Call the various ostomy supply manufacturers and discuss your situation with the rep, asking for samples of products that may work for your mom. Don't be afraid to try different combinations.

 

Eric has put together one of the most comprehensive resources online for new ostomates, if not the most comprehensive. Avail yourself of his beautifully organized and informative written and video content.  Avail yourself of this community and the wealth of personal experience and remarkable compassion that it documents.

 

It's a journey of time and experimentation, unfortunately, so don't let yourself become discouraged.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


   
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(@ericamarie94)
Joined: 5 years ago
Posts: 3
Topic starter  

@squeakyandliza We haven't tried a convex wafers paste yet so today i'm going to see if I can order a few samples. I agree I think the ring just isn't working for her either. Thank you so much, for your advice and for directly putting a smile on my moms face by helping her realize her she's not alone and there will be solutions. I can't thank you enough  


   
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(@ericamarie94)
Joined: 5 years ago
Posts: 3
Topic starter  
Posted by: @dlkfiretruck

EricaMarie94...welcome to Vo!  I'm sorry to hear of your Moms situations, and in turn....yours and your families also.  I'm sorry, I  can't advise you based on a retracted stoma but I wanted to  encourage you all somehow.  Please, by all means don't  be a stranger here. It may seem like an endless tunnel but things will get better and with you on her side  she  has a great start! No question is a dumb question, we all know that by experience. It may  take a bit of  time to  get replies sometimes,  but , they will come your way.   Make sure you get the rest and fluids and nutrition that "you" need also & try to encourage fluids for your Mom.

I know sometimes leaks are more frequent once we are home because of more activity on our part. In and out of the car, apts., getting showered,  bathed, dressed, it all makes a difference.   Please allow for patience during this time.  You are on the right track coming here.  Know that we  are here for you also, not just  your Mom,  okay.

All the best, for now....Linda 

wow, thank you! This site has been so incredible so far. Thanks so much for your kind words 


   
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(@madrikh52)
Joined: 7 years ago
Posts: 49
 

Hi Erica, 

I have not read all the replies to your original post so please forgive me if this has already been mentioned.

In addition to a convex wafer, something that has helped me greatly reduce leakage is as follows: when changing the appliance (wafer, seal, etc) gently dry the peristomal skin with a hair dryer on the low setting. I also use the hair dryer to warm my seal and wafer and find that it adheres better when doing so.

I hope this is helpful.

Peace, Marci


   
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sjlovestosing
(@sjlovestosing)
Joined: 7 years ago
Posts: 651
 

Hi Erica,

Welcome to the forum. I also can't add anything more to what the others said. You have found a wonderful resource here as well as support. I pray that things will begin to look up for both your mother and you as you go through this journey together.

God bless,

Stella


   
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Dona
 Dona
(@dona)
Joined: 8 years ago
Posts: 832
 

Welcome to you and your mother,

I also had a retracted stoma ( mostly not now, but sometimes) and had a lot of leaks. The convex wafer really  helped. Like Marcie, I also use a hairdryer ( set on lowest ..you can burn the stoma without your mother feeling it). Getting the skin warm and dry really helps. Also pre warm the wafer and the ring if you are using one.  A minute or two of gentle pressure too when its warm helps seal the deal.

Wonderful you can help your mother. Let us know how it goes.

This is a real change in life, but also lifesaving. Things do and will get better.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


   
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gpdash
(@gpdash)
Joined: 7 years ago
Posts: 10
 

Hi EricaMarie, So sorry to hear what your mother is having to go through. You have really come to the right place for help. I have to say that Vegan Ostomy is the best site that I have found on the internet for education and help regarding ostomies. My husband had an ileostomy 3 years ago as a result of Crohn's Disease. Unfortunately, he had multiple complications postoperatively. He has an oval stoma that is level with his skin and frequently retracts during peristalsis, especially when the output is very thick. There are several things that you can do to help your mother: 1) Make sure that her hydration is good - 7-10 glasses of water / other non-caffinated liquid a day (keep a record). This will help lessen the thickness of the stool. Also check this site for nutrition tips - some foods tend to thicken stool; 2) Measure the stoma when you change the appliance. The stoma will change size and shape during this postoperative period so you want to be sure that the opening in the stoma barrier that you are using is the correct size and shape; 3) Clean the skin around the stoma well with a peristomal skin wipe that does NOT contain  alcohol; 4) Follow cleaning with what is called a "crusting technique" to protect the skin from stool. This consists of sprinkling a small amount of stoma powder and smoothing it around the stoma. This is followed by dabbing the skin with either a barrier spray or barrier wipe and then drying. Repeat this technique several times; 5) If the stoma is sited between creases in the abdomen it is important to "fill in the creases" with either paste or what is called strip paste so that the barrier can be applied to a even surface. I've found that the strip paste is a lot easier to use and less "messy."  6) Consult your wound / ostomy nurse about using a convex barrier. Manufacturer's make barriers that are light convex and deep convex. It does sound as though you will need a deep convex barrier. 7) Use an ostomy belt to support the barrier. It appears from your post that you are using a Hollister barrier ring. Hollister does make a convex barrier ring. I did try it for my husband, without success because he really needed a deep convex barrier. If you do start using a deep convex barrier you may want to consider using the Hollister barrier ring that is infused with ceramide which helps to heal the skin around the stoma. Hope this is helpful.


   
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danbh
(@danbh)
Joined: 7 years ago
Posts: 93
 

Hi EricaMarie,

I would suggest using the Coloplast Brava elastic barrier strips #120700. Those come 20 per box, they are shaped as half circle, you put one on top covering the plaster on your barrier  edge and some skin, and do the same on the bottom of the barrier. They should both meet at the ends on each side. These kept me leak free at my worst times. I put them with every change of wafer, and they hold the barrier tight to your skin.

Best of luck, and don't give up.

Dan


   
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Marcie
(@shulmjs)
Joined: 7 years ago
Posts: 1510
 

Erica--I roll the seal ring and press it around the opening of the pouch for the stoma-- Gives an extra build up-- I use half of a seal ring tho-- your choice.. works great..

Hope this works for you!! M.

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


   
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LLNorth
(@llholiday)
Joined: 6 years ago
Posts: 557
 

@danbh

I have been wanting to try the Coloplast strips; I think I will ask them for a sample.

Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


   
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