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Experimenting with new appliance techniques  

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braveness23
(@braveness23)
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Joined: 2 months ago
Posts: 11
June 9, 2020 9:42 am  

Hi all. 

I'm so excited to have found this site a couple weeks ago.  I've been living (quite well) with a permanent ilostomy for the last four years but I have really felt like I was in a vacuum as far as access to knowledgeable ostomates.  My initial WOC nurse after my surgery was absolutely terrible - almost to the point of malpractice.  My current WOC is terrific but not an ostomate herself so I don't get the benefit of someone who has learned little life hacks.

Since finding this site and watching a lot of the videos I have begun experimenting away from some of the supplies and techniques I have been blindly using because I was told to do so.  I started by eliminating the stoma powder I'd been using while recovering from ulcers.  I didn't even realize I could do this but the results have been fantastic and I've experienced longer wear time, fewer and less catastrophic leaks and the skin around my stoma looks healthier!  Triple win!

This morning I did have a leak and while changing my appliance I decided to mount my (one piece) pouch sideways in anticipation of ordering a Stealth Belt (also learned about here!).  I've been using the NuHope hernia belts but I find them uncomfortable. 

Also on a lark today I decided not to use a barrier ring.  This is a first ever for me.  I am kind of anticipating a leak today but I decided, hey, I'm on day 1,876,324 of self isolation and working from home so all I really have to risk is having extra laundry.

Thanks for all of the great ostomy information and a great community!

Dave


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VeganOstomy
(@veganostomy)
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Joined: 6 years ago
Posts: 2926
June 9, 2020 11:21 am  

Thanks for sharing that, Dave! 

I experimented like crazy for the first few years, but it's never too late to start :) 

Glad you found ways to minimize supply use and benefit from it! Good luck with the StealthBelt! Let us know how you like it! 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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SqueakyandLiza
(@squeakyandliza)
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Posts: 582
June 9, 2020 11:22 am  
Posted by: @braveness23
 
 I decided, hey, I'm on day 1,876,324 of self isolation 

🤣🤣 Ha ha ha ha ha 🤣🤣 It sure feels that way, doesn’t it??

Welcome Dave!!  This is a great site isn’t it?  I didn’t discover it until I was almost a year in to my ostomate life. Unlike you though, I wasn’t doing great. I can’t remember what I googled that pulled up one of Eric’s videos, but I remember spending the rest of the afternoon watching them. Then I discovered this forum and the amazing people here with so much knowledge and support to offer. It has been a game changer, for sure!!

All the best for a leak free day!!

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


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sjlovestosing
(@sjlovestosing)
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Posts: 431
June 9, 2020 1:44 pm  

Hi Dave,

Welcome! This is a wonderful place to be. I am glad that you are confident to try new things and not afraid to do extra laundry! I hope everything works out for you.

Stella


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Dona
 Dona
(@dona)
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Joined: 3 years ago
Posts: 791
June 10, 2020 1:35 pm  

Welcome to the forum, Dave.

Always great to have another voice.

Its good to experiment until you get it right, and you will. ( and have for a few years).

I also found VO in the search for sane approaches to the new me.

 I was lucky and had great aftercare and some home nurse visits. Its really hard when you don't get that early support.

 

One thing that helped me was to keep a daily journal. I wrote down absolutely everything that might help me understand all this.  Be sure to note the date you tried something new ...and the results.

Good luck, and again, welcome.

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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braveness23
(@braveness23)
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Joined: 2 months ago
Posts: 11
June 10, 2020 7:25 pm  

A little update, I am on day one and a half of wearing my Hollister one-piece convex wafer pouch without a barrier ring and, so far so good!  I even took a shower and got it wet.  I'll prolly change it tomorrow to inspect the skin around my stoma.  I'm glad to have experimented with this and come to the realization that on a day to day basis I may be OK with just the pouch and a barrier wipe.  How liberating!


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