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LLNorth
(@llholiday)
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February 18, 2020 1:07 pm  

@kyle89

The StomaCloaks are washable, and I suggest buying the pack of three if you do this. I bought them over a year ago, don’t wear one every day, on average about once or twice a week, and they show no signs of wearing out or losing their effectiveness.


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kyle89
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February 18, 2020 1:23 pm  

@llholiday

Awesome, I will check them out - thanks!


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Jattzl
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February 21, 2020 1:36 am  
Posted by: @squeakyandliza

You mentioned the inactive hole. Is that something that is only on a loop ileostomy?  Would that be the same thing as the mucus fistula.

Hi Everyone!  I have the same question.  my surgery was in 2015 and I am embarrassed to say I have always been confused by what kind of ileostomy I have regarding the two holes.  I was out of it post surgery and all I remember is being told the second hole is to help with mucus.  It does leak fluid and mucus but I think that is all.  Is this called a loop?  Is that the only reason?  It doesn't help much with mucus as I still have issues with build up in the rectum.

Posted by: @kyle89

I now have a loop ileo which has been a bit trickier than my end. The main issue I am having is really strong odor that is seemingly uncontrollable.

Welcome Kyle!

Post surgery I had a real problem with odor and gas regardless of what I ate.  I would not use a public restroom or someones home restroom to empty bag because of it.   It took a year and many samples, every home remedy and trials of deodorizers etc.  I don't know if this will help but it is what I do and now I rarely have a problem.  No pouch filter has been useful for me, I cover them with the sticker.  I use Osto-EZ-Vents for the gas. I use Coloplast Mios and actually cut the filter out because it is so bulky.  I attached a bidet sprayer to my toilet and rinse after every emptying.  Wipe the opening well and use a deodorizer/lubricant called GEL PLUS by Montreal Ostomy Accessories.  It completely stopped the odor and changed my quality of life.  After squirting about a tablespoon in the bag I rub the outside to spread it around.  All the best to you in finding what works for you!

Joanne


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Jattzl
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February 21, 2020 1:40 am  
Posted by: @kyle89

I would do a terrible job explaining it, so here is a blurb from the NHS website that is a little clearer:

I'm sorry I missed your explanation and link, Eric.  It sounds like I have a loop.  I don't notice it being of any benefit and maybe even adds problems as I need to use a convex wafer because it caused leaking due to being so flush with my abdomen.

Kyle, Thank you for the explanation!  I just saw this.


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kyle89
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February 21, 2020 12:36 pm  

@jattzl

Hi Joanne! Thanks so much for the welcome, it's great to be here with such knowledgeable and supportive individuals. I'm sorry to hear you struggled so much trying to get it under control, but it's also great to hear you finally arrived at a solution. I have a ton of bags with filters in them that used to work flawlessly when I had my end ileostomy, but now don't work at all. Thankfully they are the Hollister filters which are pretty low profile and can be easily covered by tape if needed. I have never tried the EZ-Vents; typically I either detach the pouch from the coupling at the top or if I'm laying down just open the bottom to release gas. I guess I don't trust myself enough to cut a hole that fits the vent but doesn't allow more out. The bidet is an excellent idea, and I actually do have one (still in a box) as I saw it on sale and purchased in preparation for the J-pouch. I also see that Edgepark carries Gel-Plus so I will definitely order some and give that a shot. 


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Jattzl
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February 21, 2020 7:18 pm  

@kyle89

I'm so glad you found the GelPlus.  I have ordered it from both Edgepark and Byram.  I hope it helps you!  I had pretty much lost hope when I tried it.  I don't know if maybe the ingredients work with my system or what but it works for me.  I use 1-piece pouches so that's why I started using the EZ Vents.  I was leary at first but I have used them for almost 5 years now and never had a leak.  You do need to be very careful when burping with them to avoid any watery contents escaping lol.  I heat them with a hair dryer before applying and then press for a good minute.  I think when the odor was really strong there were times when it would just break through different pouch materials.  I also think some of all this is related to the loop thing.  Like I said I needed to start using convex because of it.  It is a relief to have, after time, come to a place of more comfort and confidence.  I really wish all the best to you.


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Jattzl
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February 21, 2020 7:28 pm  
Posted by: @kyle89

The bidet is an excellent idea, and I actually do have one (still in a box) as I saw it on sale and purchased in preparation for the J-pouch.

I forgot.  I totally LOVE rinsing bags and having the sprayer attached to the toilet!  I never had to use peroxide just water.  I think Eric mention contamination but the nozzle does not touch or come near the pouch and I do wipe it with a anti-bacterial wipe when I clean the toilet.  Also, I learned not to spray it full force.  Aim it at the side of the bag and let it run down the side  not pointed down at the stoma.  It wore down the barrier rings I use too fast when I used to do that. After I spray in the water, I hold the bag closed and just kinda swish it around to get any left near the stoma.  Quite a system lol but it makes me happy lol.


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kyle89
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February 22, 2020 12:51 pm  

@jattzl

Interesting you should mention using a 1-piece pouch. I actually just got a couple samples yesterday and switched out my 2-piece for one of them. It's the filtered variety from Hollister. I'd say that alone has cut down odor by 50-60% which is significant; I'm just hoping it's not a coincidence. But like you said, I'm guessing a lot of it has to do with the strength of the odor in general - no matter how good the pouch material is it's almost inevitable that it will be overpowered by extremely strong odors. I also got some samples for convex flanges to try, although the convex from Hollister is pretty aggressive so I am hesitant to just go for it when I've historically been fine with flat. Coloplast has sent me some soft convex to try, but still waiting for those to arrive. I ordered the GelPlus too so maybe with some crazy stroke of luck all of this combined will fix my issues!

Also, I really appreciate the tips for the bidet! I am going to set it up this weekend and give it a whirl. Seems a lot easier than my current method of trying to fill a cup with water and peroxide and pour it in to the pouch (so messy and inconvenient). Thanks again for your advice, you are so wonderful for taking the time to share it with those of us still trying to figure things out! 


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Jattzl
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February 22, 2020 2:12 pm  

@kyle89

Posted by: @kyle89

I've historically been fine with flat. Coloplast has sent me some soft convex to try, but still waiting for those to arrive. I ordered the GelPlus too so maybe with some crazy stroke of luck all of this combined will fix my issues!

I use the soft convex. I didn’t want to but due to the extra opening being so flush I would get leaks so I had too. I do prefer the 1-piece. i thought of you yesterday. I had to empty at a restaurant and didn’t have my GelPlus. Just that one time and when I got home and emptied the next time the odor was significantly noticeable. Which makes me grateful again!  I am crossing all my fingers and toes for you with GelPlus!  I hope I can help in some way. 

Joanne💙


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kyle89
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February 26, 2020 12:59 pm  

@jattzl

I finally got my GelPlus from Edgepark and wow, it makes a significant difference! I can't smell anything during normal wear and very little (to basically nothing) when I empty. I also got the bidet set up and figured out how to use it (has a remote and a bunch of buttons so it's been a process), but has made rinsing the pouch tremendously easier. This combined with a switch to the 1-piece pouch has essentially eliminated my biggest issues. I can't overstate how much I appreciate your help and willingness to share what has worked for you because it turns out it's also worked amazingly well for me!

 


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Jattzl
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February 26, 2020 1:38 pm  
Posted by: @kyle89

I can't overstate how much I appreciate your help and willingness to share what has worked for you because it turns out it's also worked amazingly well for me!

I can't tell you how happy I am to hear this Kyle!  These things made such a huge difference for me.  One of the few benefits of the struggles we go through is learning and being able to help someone else.  You have made my day and more!  All the best to you.


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