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Back in the bag(gle) again

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(@winnie)
Joined: 5 years ago
Posts: 17
Topic starter  

Hi.  Just joined after 4 months with my colostomy, because I wanted to add to a thread about DIY lubricant.

I previously had an ileostomy in 2017, a 'covering ileostomy' while a colon anastomosis 'healed'.  Unfortunately the anastomosis had a leak, so I spent several years fighting bowel dysfunction, as the leak slowly spread, but always with the tantalizing hope that if I could just figure out the right combination of treatments I could heal things.

I finally went for the permanent colostomy in Dec of 2020, and my life and health have improved tremendously.  The biggest problem: I spent 3 years fighting to keep weight on, but now have returned from 'backwards land' and have to fight to keep weight off.  Fighting a long term chronic infection will do that.

In any case, I have an engineering/chemistry background, and am also something of a cheapskate.  So I am big on trying to figure out alternatives for obnoxiously expensive supplies.  Right now working the lubricant angle.  

Happy to say hello!

-Jon



   
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(@john68)
In Memorandum
Joined: 9 years ago
Posts: 2059
 

SHi Jon, Pleased to meet you and welcome to the forum, I am sure you will find lots of advice and information here. Don’t think yer a cheap skate just inventive. Any Engineer I know always try to copy reinvent or improve what they see


ileostomy 31st August 1994 for Crohns


   
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LLNorth
(@llholiday)
Joined: 7 years ago
Posts: 608
 

Hi Jon - Welcome. It is wonderful that your health is on the upswing, and always interesting to read when people are working on ideas and improvements.

We learn so much on this VeganOstomy website and have much to thank Eric for. (Thank you, Eric 😊)

One thing I would like is a lubricant that stays on the pouch surface longer. I use Adapt, a nice product but most of it ends up at the bottom of the pouch fairly quickly.


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


   
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glenn.giroir
(@glenn-giroir)
Joined: 6 years ago
Posts: 300
 

Hi Jon!

 

Welcome.  I'm about 15 months with my permanent ileostomy, and I am just figuring out how to deal with weight gain after 25 years of being malnourished from ulcerative colitis.  It's been a tough transition that had me about 25 pounds heavier than I needed to be.  Most of it is off now, but it certainly has been a shift in how I think about eating.  The positive is that I've never gone this long without digestive symptoms.  That's a blessing.    


Ulcerative Colitis (1995)
Permanent Ileostomy (2019)
Doing what it takes to enjoy life to its fullest.


   
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 LK
(@dlkfiretruck)
Joined: 9 years ago
Posts: 1690
 

Hi Jon &  hearty welcome to you! You have an interesting history!  I was 8 years with my Ileostomy before I accidently found Eric's website. What a huge surprise to discover I was not as alone as I felt!

I learned I could try other pouches to wear & was not stuck so  permantly with the one I came home from the hospital with.   I also discovered  the M9 here but I too was making a home recipe my son found on the internet for a pouch deoderant.  In a gallon milk jug, I added  Food Grade Hydrogen Peroxide, some Baby Shampoo & Water, add a few drops of blue food coloring & voila! I don't think it works as well as the M9!! Lol! 

Good for you trying to make a home made product that works! This time slipping is appropriate!  There's a difference between cheap & Frugal!!  lol! Don't be a stranger here I'm sure your experiences will help someone new along the way.  

...just a little side note...my weight gain was due to a sleepy Thyroid    Maybe get yours checked folks.  Even a little sleepy can put weight on an unsuspecting body!   8)


Linda


   
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(@squeakyandliza)
Joined: 7 years ago
Posts: 1066
 

Welcome Jon!

You have a nice perspective in that you’ve had both an ileostomy and now a colostomy. It seems like differences between the two are coming up a lot here. 

I hope that you will find the same wonderful help and support here that so many of us have. 

On a side note, my husband is also an engineer. We prefer the terms frugal or fiscally responsible instead of cheapskate. 😀 In fact, if it weren’t for me, my medical expenses, and the benefit of employer supplemented medical insurance, he could be able to retire early. Fortunately he really enjoys working. Though I’m sure he could easily adapt to the life of a semi-professional golfer. 🤣🤣


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


   
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(@dickie)
Joined: 6 years ago
Posts: 11
 

@dlkfiretruck

Could you supply the actual recipe for your recipe, i.e., exact volumes of ingredients.

I've never heard of Food Grade Hydrogen Peroxide. Normally, H2O2, even dilute, is to be kept of skin as it's a pretty potent oxidizing agent.

Thanks.



   
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VeganOstomy
(@veganostomy)
Admin
Joined: 12 years ago
Posts: 4706
 
Posted by: @winnie

The biggest problem: I spent 3 years fighting to keep weight on, but now have returned from 'backwards land' and have to fight to keep weight off.  Fighting a long term chronic infection will do that.

In any case, I have an engineering/chemistry background, and am also something of a cheapskate.  So I am big on trying to figure out alternatives for obnoxiously expensive supplies.  Right now working the lubricant angle.  

Thanks for the intro. We have more than a few things in common. No, I'm not an engineer, but I am a cheapskate and have been trying to lose weight. LOL

I'm hoping to have my DIY ostomy supplies article up in the near future, and it may give you more ideas. Finding inexpensive alternatives not only helps to save money, but it helps people who really don't have many options.


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


   
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