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VeganOstomy Has Left Facebook and Instagram (On Purpose)

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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4255
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Any video or interview of Edward Snowden will be eye-opening from a data privacy perspective.

So in case anyone is puzzled why the VeganOstomy Instagram and Facebook pages are no longer available, it's because I've left both platforms (both owned by Facebook). The short answer: The Facebook company is evil, and both platforms are too toxic for my time and attention.

The long answer:

When I joined Facebook way back in 2004, it was a totally different place. I was able to connect with family and old friends, and it was pretty cool.

Then it became a tool to help connect with IBD and ostomy advocates as I began to develop my own form of advocacy through Facebook. Things were great! So many people found me through Facebook, and when I started using Instagram, I had the same positive results.

But as the years went on, social media changed. We began to see ads every 15th post, then every 10ty, then 5th, then every third post. There were way more "Promoted Content" that littered our feeds and then some of the advocates I followed began taking on sponsors to promote their stuff - every post, in effect, was either an ad or a post hiding an ad.

Needless to say, this significantly lowered the quality of the content I was seeing and produced a lot of noise in my feed, so the platforms became less useful for me.

But in recent years I've seen both platforms use and abuse their user's private data, even worse, they're using that data against us to promote more ads and to sell that personal data to anyone who was willing to pay.

I didn't want to support either platform personally, but having the VeganOstomy pages really kept me entrenched in the Facebook/Meta ecosystem.

As an example, you need a personal Facebook account to manage a "Page", which means that Facebook will still be tracking and collecting as much data as possible from me personally, even if I'm just logging in to reply to a private message sent to VeganOstomy.

For context, I take privacy and privacy rights very seriously in my personal life, so I'm always using an adblocker, tracker blocker, and VPN when necessary. Even with those in place, my Facebook data export lists hundreds of advertisers who used my personal data to target me.

But that's the point. Facebook and similar platforms monetize off of your private data and your preferences. You become the product, no matter how they want to spin it.

Several years ago, I when I wanted to create a safe space for people to connect and ask questions, I began to explore the possibility of starting a Facebook Group, since so many people were on the platform.

But in both my research and questionnaire to my followers, it became really clear that Facebook would not be a good place to share your private medical experiences, even in a "closed" group.

Our data is on those platforms is not protected, and Facebook Groups become a honey pot of data collection for Facebook to sell to someone else (or use it against you).

That's when I decided to start the VeganOstomy Community Forum, which is not linked to any social media platforms and allows you to use completely anonymous login/account details to you can interact. Of course, unlike Facebook, you don't need an account to view the posts on the forum.

So where does that leave VeganOstomy? Won't it be hard for people to find my content?

Yes and no, but mostly no.

While Facebook has driven traffic to the site through shared posts, search engines and other websites direct far more visitors to the site.

The difference is that Facebook forces users to see the posts, while search engines allow people the option to visit the site or not.

Freedom of choice is far better than being forced to see things that may or may not be relevant to your life. Plus, I'm always accessible directly through email or the VeganOstomy forums.

What I'm planning for VeganOstomy.

I've already started making privacy-related improvements to the VeganOstomy site, and I'm also in the process of moving some of my services over to more private-first solutions to protect both my visitors and myself from vultures like Facebook.

In my personal life, I've already transitioned nearly all of my Google services over to non-google, privacy-respecting services (including, self-hosting). Yes, Google is no better than Facebook in many regards.

While I've already removed Google Analytics from the site, and I do plan to move VeganOstomy's Gmail account over to a different service, it will be difficult to move away from YouTube at this time.

I simply don't see any other alternatives for YouTube which could provide the same reach and benefits to my audience.

But that doesn't mean I can't protect my visitors from Google's prying eyes :)

If you visit an article that has a YouTube video in it, you'll see a thumbnail without any of Google's tracking scripts or cookies loaded in. Once you click on the thumbnail, it will proceed to load the actual YouTube video (a disclosure is at the bottom of each video).

More is coming, and it's all to benefit my visitors.

Leaving social media will also free up more time and mental energy to actually work on getting more content done. I'm looking forward to a bright future for VeganOstomy.

What you can do.

Have patience while this transition takes place.

I'm still just one guy, running all of VeganOstomy on top of a full-time job and busy family life. In the next few weeks, if you see something "broken" on the site, no need to worry, it's being worked on :)

If you've donated to the site, thank you.

Your generosity has enabled me to invest in services that provide value to everyone who visits the site, without relying on ads and sponsored content.

Quit social media. Really.

There's nothing wrong with the idea of social media, but the direction that current social media companies have taken society is so off track that it will take more people to leave those platforms in order to course correct.

Mental health has been in decline and anxiety disorders have been on the rise, especially for young people, and social media use is often strongly correlated.

These platforms are engineered to steal your attention and have been purposely used to manipulate voters, promote hate, target minorities, and to be addictive. You don't have to be a part of that system.

If you'd like to learn more about the problem and what you can do about it, I encourage you to view these videos and tap into various resources which promote privacy as a fundamental human right. The data privacy community is huge and growing every day.

The Social Dilemma (on Netflix)

Cal Newport (his video interviews are great, but his books are also wonderful)

The Great Hack (on Netflix)

Electronic Frontier Foundation (nonprofit defending digital privacy; they offer practical tools and advice)

Any video or interview of Edward Snowden will be eye-opening from a data privacy perspective.

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


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

Wow! Eric, I am, once again, in awe of your integrity. A mere “thank you “ seems so inadequate, but thank you nevertheless. I really appreciate what you are doing; this kind of attention to and concern for what is happening on this site is exactly why I left another ostomy site for this one. You are a very rare person.

 

Laurie

Just a semicolon


   
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Jattzl
(@jattzl)
Joined: 7 years ago
Posts: 118
 

Well done Eric!  Support you 100%!!  I have done the same and hope many others will follow. 

Joanne

54 years Type 1 Diabetes, insulin pump, CGM, neurological complications, retinopathy, and autoimmune CIDP. Nerve damage led to ileostomy in 1/2015.


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

Am totally in agreement. My wife give her Facebook account up last year! I am excited to see what the future of VO will bring. Best wishes for the future changes ??

ileostomy 31st August 1994 for Crohns


   
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sjlovestosing
(@sjlovestosing)
Joined: 6 years ago
Posts: 651
 

Bravo, Eric! Thank you for looking out for us and Veganostomy. This is such an important place for us to be as this is the only place many of us can get info and support. 

I never went on any of the social media (except here) as I have always been suspect of their intentions. (Call me cautious.) Social media can be very addictive, plus there are other reasons that I never got involved. Privacy is paramount to me. I also use adblockers and other means to keep the advertisers at bay. 

Again, thanks so much!

Stella


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

The support has been much appreciated. It's just a small step, but it moves the site in line with more of my values. 

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


   
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(@varg55)
Joined: 4 years ago
Posts: 53
 

@veganostomy I think it's fantastic that you are doing this Eric.  Thanks so much!

 

Terry

 


   
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(@kedikat)
Joined: 3 years ago
Posts: 90
 

Tried Facebook many years ago. Dumped it within 2 weeks. Felt it was a negative and definitely felt I was being herded in it's desired directions. Obvious it was a data mine and manipulative.

I take some security precautions, but it gets difficult. My home PC runs Linux. I go so far as to have hard switched dual boot. I physically flip a switch to choose which drive is powered for boot. One drive is for casual stuff. No worries about where I wander on that one. But no real personal or financial logins on that boot system. When I want to do banking, email or visit other sites with logins I boot up with the other drive. Never wander around randomly on that one. I even go so far as to close the browser every time I go to login to another account. Clears all cookies and history.

My phone only has a link and login for my work email. No banking on it at all. No payments with it. No site logins.

My laptop is not very secure. But it is almost all work oriented. I need Win 7 on it due to some software. Have Kaspersky anti virus full suite. Seldom log into anything on it.

In decades of computer use I have had fewer than 10 instances of any spyware, viruses. All have been immediately flagged and removed. I very seldom even get spam email.

Being basically antisocial helps too.

Why?


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

@kedikat I've been experimenting with Linux for like 20 years, and it never works out for me. I don't know why, but after things are set up the system will simply get really sluggish or lock up. I've tried on my desktop and various laptops. I'll probably give it another go when I have a chance, since Windows is a data-miner's dream :( 

I used to run custom ROMs on my smartphone, but Samsung made it impossible to do that on their newer phones, so I've been running FOSS and system wide ad/tracker blockers until I can get a phone that's more ROM-friendly. 

It's hard to keep up, and banking apps are the worst!! I can't believe how many trackers my banking apps have - more than most other apps. It's disgusting. We're talking tracking through Facebook analytics, Google analytics, Adobe marketing, Google ads, and more...for a banking app! 

But hopefully this site is just one less thing to worry about when all is said and done. 

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


   
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GoatHerder
(@goatherder)
Joined: 3 years ago
Posts: 156
 

Congratulations! That was a class act move as far as I'm concerned.

I've been telling my family since day 1 that Facebook's income model made THEM the product and that they should have nothing to do with it. I keep offering to host a family only web forum so we can all share our lives, but can't convince any of them to leave Facebook to do in sadly.

 

 

Retired engineer, now goatherd
Ostomate since 2015: Mid transverse after cancer
Our goats always live at GoatsLive.com


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

@goatherder That's a shame! I have seen several self-hosted options, but it's really hard to leave platforms like Facebook if you've invested a lot of time and energy into it.

That's why these companies offer more than just a way to keep in touch with family... they add games, marketplaces, groups, video chat, instant messenger, etc.... the more they add, the deeper you get into their ecosystem.

You aren't leaving a social media platform by that point, you're leaving all of those services, which does make it difficult for so many people, unfortunately.

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


   
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 lg
(@grw)
Joined: 5 years ago
Posts: 39
 

Eric, 

Totally agree, I hope the world will wake up and catch on to what these corporations are doing.


   
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 Ryan
(@Ryan)
Joined: 2 years ago
Posts: 1
 

I agree with Facebook and Google being monopolies. I like your site because I learned how to deal with my ileostomy by video at first then reading comments. I work at the hospital where I got my lifesaving emergency and I learned more from you than the wocn nurse there. Take care everyone questions are a sign of intelligence.


   
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 bobj
(@bobj)
Joined: 2 years ago
Posts: 9
 

Left Facebook over a year ago, haven't looked back since.

Thank you for rising up to the challenge, I've since joined a plethora of forums on the internet for most of my online interaction with members of the community, this forum being one of them. I actually disabled YouTube the other day as I felt it was too addicting and I was entertaining too many conversations with online trolls and antagonists. Not anymore.

Once again thank you for this forum.


   
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(@I Rebekah Miller)
Joined: 2 years ago
Posts: 1
 

When I first received my colostomy in 2020, a perfect gentleman helped me in hospital. I am in Charlotte, NC , your face and voice looks so familiar...I wonder if it was you.

Anyway keep helping all. Thank you, very much. ❤


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

Hi Rebekah,

It certainly wasn't, but it sounds like he helped you when you needed it. ?

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


   
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(@Mrs Shoob)
Joined: 2 years ago
Posts: 2
 

Totally agree with you! Social Media is toxic, full of adverts and I fear for future generations.


   
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(@Karyn)
Joined: 2 years ago
Posts: 4
 

I am addicted to YouTube; I was just thinking of shutting it down for awhile: your post is inspiring. (I joined Facebook briefly to participate in a different medical forum, but when they wanted a Photograph of my Face to continue, I said heck with this. Hooray for Vegan Ostomy for setting up forums that are not on Facebook! To Me, they're More accessible. Hooray!


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

I’ve recently left Facebook as well after 2 major hacks. One on my fb that I had since 2007  and then most recently on a new one I started Don’t think I will be going back on that thing. And Eric you are totally right in saying it is not the same facebook that it started out to be. The app puts so much tracking and garb in your phone. It scarey. Since the integration of this meta I noticed things had gotten even worse. 


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

Posted by: @chelly

The app puts so much tracking and garb in your phone.

This is a huge problem for anyone with a modern phone, even if you don't use Facebook it's preinstalled and still working in the background collecting data. Not to mention the battery drain... LOL

It's also pretty frustrating that legitimate business' or even my local municipality posts everything on social media, which makes it an accessibility nightmare.

I think the world of social media, and the internet in general, needs a major course correction!

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


   
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