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(@squeakyandliza)
Joined: 5 years ago
Posts: 993
Topic starter  

I am still struggling with leaks. I just had to change my appliance in the bathroom at work. While doing that, I realized I didn’t restock my emergency bag after last time. I usually have 2 spares, but this time I only have one. And I have to lead a meeting in an hour and a half, where I will be standing in front of the room.  If anyone sees this before 2:30, send good non-leaky vibes my way. Thanks! ?

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


   
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(@squeakyandliza)
Joined: 5 years ago
Posts: 993
Topic starter  

So hear is what is going on with me and Squeaky (aka Leaky). When I went in to the dr office a while back because my stitches were pulling out, the nurse put aquacel around my stoma and covered it with an eakin ring and put my bag on. Then they did a new referral to the ostomy nurse. The ostomy nurse just put aquacel on the one spot that was open wound and put powder on the area around the stoma. And put a one piece bag. I tried it her way for a few days and was having to change 3 times a day, so I went back to the way the surgeon’s nurse did it with my regular bags and was getting 2-3 days between changes. 

Well in the last few days, I have been getting several granulomas on the edge of where my skin meets the stoma and it is very painful. I’m pretty sure the aquacel is causing the granulomas. So the last couple changes I have only put the aquacel on the little spot where the ostomy nurse put it, and using part of one of my coloplast rings where I get most of my leaks and then putting an eakin ring over it all before putting the wafer on, thinking it would have the same effect as the aquacel all the way around my stoma, only without the granulomas. But that isn’t working and I’m back to once or twice a day leaks. 

This is getting so frustrating!!  I’m still waiting on my sample of the ring that is supposed to funnel the output into the bag. I’m running out of ideas and running out of patience. My area around my stoma has been bleeding a lot too. 

Any suggestions??

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


   
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(@john68)
Joined: 7 years ago
Posts: 2048
 

Hi Liza, it’s seems you are caught in a cycle of leaks caused by bad skin and bad wafer time because of bad skin. I do know that the granulomas are caused either by output or wafer cut too tight and not by anything else. Better treatment from a nurse to see and trouble shoot would be helpful! If you only could get it.

 

ileostomy 31st August 1994 for Crohns


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4255
 

Liza, such a frustrating time for you! :( 

As John suggested, granuloma could be caused by the appliance being too tight or rubbing against the stoma (which would also cause the bleeding you appear to be describing). I would re-evaluate the appliance and/or cut it, so there's a small gap around the stoma (which will naturally fill in as the wafer swells). 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@stella)
Joined: 3 years ago
Posts: 82
 

Lisa,

I'm so sorry to hear your pain. I know it's frustrating to have leak and it's painful if it impact the skin.

I had leak few months ago. My output is quite watery and the pancaking caused output all around my baby stoma. Especially at night, all output just fell back all over the stoma because I sleep on my back. Therefore every night at that time, the output went under the protective ring and wafer and caused serious leak.

Then someone here introduced Hollister ring #8805 to me. (they have convex type with a different product #) This is the one working for me. I still need to change every 3 days. On the 4th days, I can see the ring swelled almost up to maximum. I can see this when I change and take off the bag.

I don't know what's the difference of the material of this ring compared to other company's ring. But seemed the adhesive part and may be other material character of this ring suits my issue.

Another thing I like is this ring use 2 film on the top and bottom to be peeled off before using. I usually just peel off one side first, put it on the skin around the stoma. Then I use my finger carefully press the ring a little down to attach well on my skin. By doing this, I can see my baby stoma come out little well and let me see her little mouth. (I press very gently). Since I keep the film on the top side, the ring doesn't stick on my finger. After pressing it down nicely, I carefully take off the film on the top (I take off the film by passing the hole of the film over the head of the stoma carefully).

Then I put the skin barrier on. I cut the hole on the skin barrier with that gap. After I put on the skin barrier, I can see there is a little strip of the ring part between the edge of the stoma and the inner edge of the skin barrier. (I will still gently press the skin barrier a little all around to make it attach well on the ring.)

Then put on the bag.

Every time during change : After I take off the old bag and skin barrier with adhesive remover, I cleaned off all output (if there is) carefully. Then I use water from tape clean all around the stoma carefully. Then dry off all water carefully. Then I usually let skin expose to air for around 15 minutes.

Not sure is this helpful to you or give you some idea to fix you leak. I really hope you can solve the issue very soon. I can feel your frustration and yes, I understand your skin feel the painful .


   
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(@squeakyandliza)
Joined: 5 years ago
Posts: 993
Topic starter  

I’ve had 3 bag changes today and it isn’t even 4 pm yet. The last two have been at work. I just want to cry. My skin is bleeding and hurts so bad. The last leak was primarily blood. Why is this so hard?

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


   
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(@stella)
Joined: 3 years ago
Posts: 82
 

@squeakyandliza Lisa, sorry to hear this.  I really cried for your situation. Yes, why it's so hard on you. I can feel your pain. Hope there's doctor or nurse or some one, can find out the cause of the problem for you.


   
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LLNorth
(@llholiday)
Joined: 5 years ago
Posts: 543
 

Liza, I am so sorry; I truly wish that this will heal and settle down for you very soon. I know it can be hard to get in for medical appointments - Are you able to call and perhaps do a video visit with a doctor or wound care nurse? 

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


   
Tigerlily reacted
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Tigerlily
(@tigerlily)
Joined: 4 years ago
Posts: 369
 

@squeakyandliza I am so sorry that this has been such a struggle for you. Is it time for a second opinion? Sometimes bringing a fresh perspective can make a huge difference.

 

Laurie

Just a semicolon


   
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KellBella
(@kellbella)
Joined: 2 years ago
Posts: 5
 

Tip; Looks like I’m a little late but one issue could be that if you measured your stoma standing up and haven’t yet measured it after laying down for 5mins, they can be very different measurements. For example; my stoma standing is 1.5 inches- laying down its 11/8 inches.
When I cut for the bigger measurement, I leak when laying down. Even in my recliner-leaks!  But, if I cut for the smallest measurement, no leaks! 
I also apply it laying down using mirrors

 

? Stay Positive ?


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4255
 

@kellbella This is a wonderful tip. Thank you for sharing that!

Have you found that the hole in your wafer is ever too tight during the day (when you're standing more) when you use this method of sizing the hole?

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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KellBella
(@kellbella)
Joined: 2 years ago
Posts: 5
 

@veganostomy no as long as I double check the size of the hole with the template, as stenciling a cut guide with a marker can make your cut too small, even millimeters make a difference

hardest part is placing it correctly (even millimeters make a difference) ? 

? Stay Positive ?


   
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KellBella
(@kellbella)
Joined: 2 years ago
Posts: 5
 

Also please note, I learned this at the hospital after my surgery from a WOCN (Ostomy nurse) they changed it every other day and always this same way; although they never measured it standing up

? Stay Positive ?


   
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(@smarty)
Joined: 2 years ago
Posts: 16
 

Hi Leaks:

I've been experiencing leaks also.  I finally found a method which at least allows me to sleep through the night and may last to end of day, however getting 2 days is still a dream!  

I use the convetec convex barrior, When changing my appliance I first rinse  skin with water and a wash cloth. I only use adhesive remover if there is residue of the adhesive.  I then apply coloplast brava strip around my stoma, I apply an eakin seal directly onto wafer and spread it so it covers the whole wafer, I heat the wafer with hair dryer then apply to skin and hold for about a min. then a apply extra eakinaround stoma on top of wafer.  

This method helped heal my skin irritation. I dont use skin prep or extra adhesive, although my osto nurse suggested I give it a try to hopefully get at least 48 hour wear time.

I quess the secret is to continue trial and error, and coming to message boards for advise


   
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(@john68)
Joined: 7 years ago
Posts: 2048
 

We all find a technique that works or an appliance that’s suitable. One thing I feel gets over looked is dry skin. Getting and keeping the skin dry before any appliance goes on gives a great place for everything to seal/stick. It can be a challenge and easier done some changes than others. But worth the extra time and effort ??

ileostomy 31st August 1994 for Crohns


   
VeganOstomy reacted
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(@yvan-charbonneau)
Joined: 2 years ago
Posts: 39
 

One thing I noticed helps prolong and reduce leaks and oil sirs is an hernia belt the pressure keeps everything sealed and nearly leakproof. Two piece appliance has helped me   A lot as well. Lately my one piece device has be a little temperamental.


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 552
 

I agree about what others say about sizing and measuring. I can remember if the hole I cut was too small it would rub and bleed and leak under the pouch. 
it would leak around the stoma if I cut it too large. 
maybe time to get back to the stoma nurse to get resized and get advice. 


   
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(@squeakyandliza)
Joined: 5 years ago
Posts: 993
Topic starter  

Thank you everyone for all the kind words and advice. 

I haven’t been here much lately, and I miss my friends here!!  Life has been crazy. Work is good but very busy. 

I hope you are all well. Best wishes to all for a healthy and happy holiday season. 

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


   
VeganOstomy reacted
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LLNorth
(@llholiday)
Joined: 5 years ago
Posts: 543
 

Best wishes to you, also, Liza! Hope you and Squeaky have been well and healthy. LL

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


   
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