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Now I know why I got off facebook-Entyvio Warriors. I'm happy at HW forum.

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Ulcerative Colitis
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Posted 7/9/2015 1:51 PM (GMT 0)
I joined Entyvio Warriors on FB, I see at least a few pictures everyday of someone getting their infusions. I don't know, it's just annoying to me. I remember now why I dislike FB, it's like  "hey look at me, here's what I'm eating for lunch, had for dinner, here are my new shoes, here's my dog" I'm going to stick with HW and talk to be people here about Entyvio.
Posted 7/9/2015 5:04 PM (GMT 0)
Haha I ditched FB years ago, found HW afterwards, and haven't looked back since. Seems FB is more about presenting an image of a perfect life (vacation pics, new car, new job, etc.) and impressing others. At healingwell it's much more real and honest: I pooped my pants. Here, we can help each other out when it truly matters, when uc has got us down, depressed, and we're up against a wall on what to do next.
Posted 7/9/2015 5:09 PM (GMT 0)
Lol, I belong to a J pouch FB group which is a fantastic group of people and support but every so often I get the big selfie shot of someone showing off their stoma. I really don't want to see THAT!
Posted 7/9/2015 5:50 PM (GMT 0)
UGH, I hate facebook, I used to be on it mainly for Lululemon cuz I was an addict lol but I would sometimes go to local news facebook and found people just acted crazy and stuff so I closed out my account since I got a grip on my shopping addiction lol.

Nice to see you back therearemiracles!
Posted 7/9/2015 6:04 PM (GMT 0)
I see Facebook as mainly for youngsters, often showing off, so personally I dont use it, or like it. The couple of time I have been on it I have seen things on there that have bothered me, so its not for me.
Posted 7/9/2015 7:21 PM (GMT 0)
At least it is good for seeing what your old high school friends are up to and not have to go to the reunion. Someone made a funny toast ...that your life should be as good as you portray it on Facebook..lol.
B
Posted 7/9/2015 9:17 PM (GMT 0)
I have friends who are very open about telling the world they have UC or even worse....cancer. I never understood it either. No one but my very close friends and family knows about my disease. I think some people just need that constant empathy. I would rather get answers instead of empathy.

Because I am an author, a few publishers have actually put in my contracts that I have to "maintain a Facebook account." Yes, I am required. That is what this world has come to. It is now considered abnormal to want a little privacy. Thank god I only have to post professional things on FB.
Posted 7/10/2015 2:56 PM (GMT 0)
My local radio station does a weekly segment called Facebook theatre, where listeners send in epic FB fights and the radio hosts act it out. It's a total riot. Here's an example: m.wheb.com/media/podcast-greg-and-the-morning-buzz-themorningbuzz/why-did-you-post-that-facebook-25919844/
Posted 7/10/2015 3:12 PM (GMT 0)
I am on FB, but am super private about my UC. I have a love/hate relationship with FB. I am on there to keep in touch with people.But it is a bunch of phoney BS and drama, too. FB also snoops into your privacy, so I would never feel safe posting or messaging anything of a personal nature. I am loving this forum, and for meeting people who understand the hell of UC. Even when you explain to others, they don't "get it." I don't feel judged here.
Posted 7/10/2015 3:19 PM (GMT 0)
I'm on FB because a lot of my animal organizations are on there. And I have a food page for recipes (a lot of gluten free stuff).

If anyone wants to join, search for:

Michele's Delights
Posted 7/11/2015 11:18 PM (GMT 0)
ipoop--about fb theater. That link was hilarious.
Posted 7/12/2015 3:44 AM (GMT 0)
But I agree about social media.

Companies are quick to jump onto social media. They know that it is a powerful medium for communication and that it pays to have a strong, positive online presence. They also know that negative reviews, ratings, and posts can hurt them. They have been increasing their social online presence accordingly. For example, when they pay to put an ad on a forum for a product, they also pay to have someone post about that product, and that person need not limit him or herself to only one account. Statistics show that people will believe the post (especially if there are multiple people posting), not the ad, which they know was paid for. The ad is the call-to-action. In other words, viewers believe the post and when they see the ad, they click on it due to the favorable post or posts they read.

Of course, companies target their posts. For example, they aren't going to post on health sites about suits.

Post Edited (subduedjoy) : 7/11/2015 9:51:27 PM (GMT-6)

Posted 8/27/2015 4:54 PM (GMT 0)
Does anyone know how to get into this group? I'm starting entyvio shortly and would love to browse the group.

I put in one request to join but I think it was denied. I put in another request and now it appears I've been blocked from even seeing the closed group page?

Anyone here an admin or member?
Posted 8/27/2015 6:58 PM (GMT 0)
Agree with the sentiments in this thread.

I loved facebook when it was new and interesting back in my college days. Had tons of fun wasting time on it and connecting with old friends.

Unfortunately nowadays it's pretty much everyone propping themselves up and presenting the illusion of happiness, wealth and beauty. I think there was even a study showing that it made people more depressed due to status anxiety and comparisons. Oh you make 200k a year and married the love of your live? That's great, but you don't need to brag about it 24/7.

Their privacy and security flaws also made me deactivate my account, though I may take a quick gander to see how my old friends are doing one of these days. It's a little disconcerting knowing that they sell every piece of personal information to advertisers, and they know where we are at all times.
Posted 8/27/2015 7:29 PM (GMT 0)
My FB is all pictures of babies. I like to read about things that interest me, technology, sports, music, events, art, animals, cooking, and a little of who's doing what, but I don't really care to see pictures of babies, it's boring.

Guardian, i see a lot of what you describe too, but between baby pictures. I think i'd rather hear about someone's made up 200k job than see baby pictures. Though both are pretty mundane. Oddly, i could look at animals all day and it's not boring, especially if there is a story. The baby pics never come with a story :)

I was a member of entyvio warriors but it wasn't all that useful for me, especially now that i've had surgery. It's mostly people with Crohn's. I guess it could be a good resource. Lots of people trying alternatives. Lots of people new to entyvio, lots of pics of people getting infusions. That's about it.
Posted 8/27/2015 7:39 PM (GMT 0)

notsosicklygirl said...
My FB is all pictures of babies. I like to read about things that interest me, technology, sports, music, events, art, animals, cooking, and a little of who's doing what, but I don't really care to see pictures of babies, it's boring.

Guardian, i see a lot of what you describe too, but between baby pictures. I think i'd rather hear about someone's made up 200k job than see baby pictures. Though both are pretty mundane. Oddly, i could look at animals all day and it's not boring, especially if there is a story. The baby pics never come with a story :)

I was a member of entyvio warriors but it wasn't all that useful for me, especially now that i've had surgery. It's mostly people with Crohn's. I guess it could be a good resource. Lots of people trying alternatives. Lots of people new to entyvio, lots of pics of people getting infusions. That's about it.

I enjoy looking at animals too, though I think reddit is the best place for that IMO. Just go to /r/cats or the many animal subreddits - it's cuteness overload. The /r/BeforeNAfterAdoption/ adoption stories are also very touching. This one in particular is my favorite one yet.

Congrats on the surgery! I hope everything goes well for you.
Posted 8/27/2015 7:47 PM (GMT 0)
Okay fair enough about privacy concerns, but people who moan about their newsfeeds really confuse me. Facebook is literally just what you make of it? Just 'unfollow' all the people who post pics that annoy you, so you stay friends but they're not constantly popping up. I've 'liked' pages, blogs and journals that interest me, and so my newsfeed is always full of fascinating articles. It's just a good place to pool information.

And the people saying they don't like talking about their illnesses online, good for you, but how about not disparaging people who do? I personally find all the stories on the Crohn's and Colitis UK facebook page really interesting and inspirational.
Posted 8/27/2015 7:51 PM (GMT 0)

Guardian7 said...

notsosicklygirl said...
My FB is all pictures of babies. I like to read about things that interest me, technology, sports, music, events, art, animals, cooking, and a little of who's doing what, but I don't really care to see pictures of babies, it's boring.

Guardian, i see a lot of what you describe too, but between baby pictures. I think i'd rather hear about someone's made up 200k job than see baby pictures. Though both are pretty mundane. Oddly, i could look at animals all day and it's not boring, especially if there is a story. The baby pics never come with a story :)

I was a member of entyvio warriors but it wasn't all that useful for me, especially now that i've had surgery. It's mostly people with Crohn's. I guess it could be a good resource. Lots of people trying alternatives. Lots of people new to entyvio, lots of pics of people getting infusions. That's about it.

I enjoy looking at animals too, though I think reddit is the best place for that IMO. Just go to /r/cats or the many animal subreddits - it's cuteness overload. The /r/BeforeNAfterAdoption/ adoption stories are also very touching. This one in particular is my favorite one yet.

Congrats on the surgery! I hope everything goes well for you.

Thanks, I feel like I still have so far to go.

That is a cute story. I was just reading about a 2 legged dog, unbelievable really!!!
/www.facebook.com/CupcakesAndGrenades?fref=ts
You have to watch some of the videos to see how amazing it is.
Posted 8/27/2015 8:01 PM (GMT 0)

malaika said...
Okay fair enough about privacy concerns, but people who moan about their newsfeeds really confuse me. Facebook is literally just what you make of it? Just 'unfollow' all the people who post pics that annoy you, so you stay friends but they're not constantly popping up. I've 'liked' pages, blogs and journals that interest me, and so my newsfeed is always full of fascinating articles. It's just a good place to pool information.

And the people saying they don't like talking about their illnesses online, good for you, but how about not disparaging people who do? I personally find all the stories on the Crohn's and Colitis UK facebook page really interesting and inspirational.

nah, i think i will just continue looking at baby pix and complain. jk! I don't use it that much so i don't care too much. I have stopped seeing posts of a few baby spammers but it's shocking how quickly new ones come about. I should do a sweep and stop seeing posts from all the baby people, you're right! That could entirely change my FB experience.

idea smilewinkgrin
Posted 8/27/2015 8:04 PM (GMT 0)
I highly recommend it notsosicklygirl! I'm absolutely dreading the next few years when people my age start having babies and getting married - I'd be very sick of it too.
Posted 8/27/2015 8:05 PM (GMT 0)
Without FB we'd have no contact with nieces and nephews so it's been a real bonus since we live many states away. I can't believe no one here has commented about politics and religion on their FB feed lol. Most of our family (both sides) are exactly opposite us in both areas so we all try and keep that low-key but our FB friends (who are like us politically and non-religious) don't have the same restraint haha.

I would never post anything about UC on FB, that's letting the world know too much about me.
Posted 8/28/2015 2:54 AM (GMT 0)

iPoop said...
My local radio station does a weekly segment called Facebook theatre, where listeners send in epic FB fights and the radio hosts act it out. It's a total riot. Here's an example: m.wheb.com/media/podcast-greg-and-the-morning-buzz-themorningbuzz/why-did-you-post-that-facebook-25919844/


Holy smokes! I've been living in my bathroom way too long! I had no idea people (assuming young ppl) posted stuff like this! Absolutely hilarious....yet I'm concerned for humanity at the same time.
Posted 8/28/2015 3:17 AM (GMT 0)
Welcome back to the real world Miracles :) I am on FB frequently but I am choosy on what I put on there. I leave my true support system here on HW. Everything is so superficial on FB. I get tired of seeing a few friends who constantly look for sympathy by posting sappy stuff. Or what really annoys me is when someone moans and groans constantly about having an upset stomach...I'm like really??? I am mainly on there to connect with family - some distant, especially my son in law who is serving overseas in the Army.
Posted 8/28/2015 12:38 PM (GMT 0)
I requested to join Entyvio Warriors and my request was never accepted! (It's my next biologic I am supposed to take.) Now I don't feel so bad. I was looking for info. Not flagrant over sharing.

I am amazed at what people share on Facebook too. The worst is when we get into the stomach bug season and you have to read about the tragic tales of your Facebook friends getting D and vomiting for 3 days straight. Whoa. A whole 3 days. I have to sit on my fingers not to reply with some snarky comment. (Only my family and very close friends know about my UC and I plan to keep it that way.)
Posted 8/28/2015 3:17 PM (GMT 0)
Okay I sort of understand the disgust surrounding people who share their UC stories on facebook, but a lot of you seem to be judging people who tell people about it at all. A lot of you keep saying 'only close family know about it' as if your stoicism makes you superior? Now I'm definitely not one to overshare on FB - I don't think I've ever posted a status actually. But most of the people in my offline life know about my UC - if it comes up in conversation, why would I try to hide it? I'm in the hospital a lot, people ask where I am or what I'm doing, I'm not going to lie. if it's going to help people understand what I'm doing though, darn right I'm going to tell them - you can't whinge that nobody understands what you're going through when you've made no effort to explain it to them. There's nothing shameful about having UC and if people were more comfortable talking about it, then there wouldn't be so much ignorance and stigma.
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