Facebook

[jlbattin]

I joined the FB page awhile back, and stayed for a little while, but I found that it was a place where many came just to get sympathy for every time they decided to eat something they shouldn't. They would whine and moan and groan about that ice cream or something that they just couldn't live without. They didn't seem to really want to do what it takes to get better; they just wanted sympathy when they didn't. I decided I didn't want to spend my time going down that road.

I much prefer to come on here with those who really stick to their diets and want to get better. Together we can figure it all out.

That was just my two cents worth about the FB page. I'm sure there are others that would disagree with me, but that's what I found it to be.

[Sheila]

I happen to agree with you, Happybird. Some on Facebook are seriously working to get well, however there is a lot of floundering and guessing. Several of us have recommended this site and purchasing Tex's book. Some have done so and are learning a lot. I don't spend much time there, very frustrating.

Sheila W

[Goesalot]

Hi everyone,
I found your info regarding the facebook page and I have asked to join. I also saw that Tex posted the website to the Microscopic Colitis Foundation. When I started reading about MC it is telling me that people should not be using PPI's. I would like to know if someone has had an experience with PPI's? I have been diagnosed with
Barrett's Esophagus which is a pre cancerous conditions. I take esomeprazole on a daily basis plus I take Pepto if needed for any intestinal upset or stomach upset. I also follow a pretty stick diet. By trial and error I have found out some things that I throw up from. That is not pleasant as the acid that comes up could set the room on fire. I am feeling good at this time. My MC (with my diet) is under control as long as I am under control and so is my Barrett's. I will be having another upper GI in the fall. How can I possible get off of PPI's?
Always worried my MC might relapse and my Barrett's might turn into cancer. Cancer runs pretty heavy in my family.
Any thoughts would be appreciated.
Ruth

[tex]

Hi Ruth,

Having a Barrett's diagnosis would make weaning off a PPI much trickier. It can be done, but you would need to be sure that you didn't allow any reflux to irritate your condition. H2 blockers can be used in place of a PPI to suppress stomach acidity during the weaning process. H2 blockers are only effective for a few hours, whereas PPIs are effective for roughly 3 days, so they would need to be taken often, as needed. But the point is that H2 blockers are much easier to wean off than PPIs, because unlike PPIs, H2 blockers do not cause reflux to become worse than it was originally (because of their famous "rebound effect") when their use is discontinued.

Have you downloaded and studied the article listed as "Download tips for controlling GERD without the use of drugs" on the Microscopic Colitis Foundation website? Among other things, it offers pointers on how to wean off a PPI. If you haven't considered it, here's a link to the download page:

http://www.microscopiccolitisfoundation ... loads.html

It's a complex problem, because PPIs cause many health problems, including triggering MC in many cases.

Tex

[Lilja]

My impression after having joined the Microscopic Colitis Facebook Group is that there is so much ignorance about the disease, and if you try to give some information, people are not interested in putting effort into reading the links and the proposals you offer. They just keep asking the same questions.

Most of them are looking for "quick fixes", and we know they don't exist.

Maybe they are all so sick and tired of being sick, that they don't have the energy to investigate and read.

Anyway, I have quit the group.

Lilia

[Gabes-Apg]

lilja
my experience is, things like social media have encouraged the ask a question get a quick fix approach. When the advice given involves changes, patience, diligence etc they move on. that is why I did not join the FB MC group. I did not think it was the right mode for the complexities of life with MC.

If someone is really keen to get well, they will find the forum, and spend the time reading key posts/discussions that will help them.

[Lilja]

I agree with you, Gabes.

Lilia

[Sheila]

Some people in the Facebook group are almost impossible to help. Several of us PP have suggested a visit to this site and also to purchase Tex's book. Several have done so and are appreciating the good info. I'll stick with it a while longer and hope more people will take advantage of PP and the book.

Sheila W

[HappyBird]

Facebook has ruined many a good and helpful forum.

I don't understand exactly why this is but I can tell you that the wonderful parrot forums have disappeared
in favour of disorganised FaceBook pages where people snipe at each other. A well known and loved parrot
person, Sally Blanchard, used to write and give advice on parrot behaviour, training and feeding. She's written profusely about parrots and all that information is now not visible to those who need it.

Sally tries to promote her information on facebook but instead of the information being easy to get to now its very difficult to access. Random people seem to appear on Facebook to make random stupid comments.

I went in Facebook recently when I found two of my old friends were having serious health issues and FB was their preferred method for communicating with friends. Up to now I have avoided FB, today I am considering coming off FB. People don't communicate on there, they just peek at friends photos and stuff. I chat to two of my my friends via messenger only, the other friends occasionally comy by and like something on my timeline which immediately makes me feel I should reciprocate. It all seems a bit false.

[natythingycolbery]

^^ I wonder if this is a generation thing? Because most people around my age use it to keep in touch with each other. I keep in touch with university friends that way.

I tend to avoid health groups because they turn into competitions over who is the sickest.

[JFR]

I tend to avoid health groups because they turn into competitions over who is the sickest.

That's really true. The competition to determine who is the sickest tends to make them disease groups not health groups. I avoid them like the plague (also a sickness).

Jean

[tex]

Jen,

The British style of humor has always captivated me (long-time Monty Python fan here). Brits are also the undisputed champions of understatement.

It all seems a bit false.

I cannot imagine a more precise and concise description of FB. In 6 short words you have captured the heart and soul of FB. I can remember thinking, back when FB first appeared online, that it was created by someone who didn't have a life, for others who didn't have a life, so that they could all not have a life together, online. That now-famous "Like" button is so FB. It's pretty easy to visualize the guy who came up with the "Like" button, sitting alone and lonely in his room, staring at a computer screen and wishing that someone . . . anyone . . . would just acknowledge that he at least existed. By creating that button, he was suddenly able to elicit a response that represented (to him at least) affection and significance. And as if by magic, when the first person clicked on that button he instantly became significant, and so did anyone else in the world who was willing use their own "Like" button to troll for artificial affection. It was originally a pathetic cry for affection, but of course now it has branched out to be associated with all sorts of irrelevant interests because of the commercial aspects of it.

But as far as I can tell, it has done irreparable damage to society. Before FB, people actually communicated. FB has turned the way that friends and relatives communicate into an artificial and somewhat surreal game (for want of a better word). Before FB, when someone had important news to tell others, they thought enough of their friends and relatives to give them the news face to face, or with a phone call, or a card or letter, implying that those people actually meant something to them. Today, they post it on FB (mixed in with tons of irrelevant trivia and other junk), and they expect their friends and relatives to wade through all the crap (day after day) to occasionally find a tiny bit of important news. By posting it on FB they feel that they have done their duty, and it is up to everyone else to log in to "discover" the news. IOW the burden of "showing respect" has shifted from the originator of the news to the recipients. To my way of thinking that represents a rude and inconsiderate way to treat your friends and relatives. But I reckon I'm just old-fashioned.

Tex

[T]

Friday A person at work told me I needed to get FB so he could add me I replied why so I can block you.
To much drama for me.

Terry

[JFR]

So Tex, tell me what you really feel about Facebook.

Jean

[tex]

Well, since you asked, I believe it's a great place to kill a lot of time while being tricked into believing that one is actually enriching one's life and the lives of all who diligently read everything posted there. And it's arguably still the most effective platform in the world currently available for young people (and anyone else naive enough to do so) to inadvertently destroy their future career opportunities by allowing themselves to be enticed into posting information and images that they will later regret, but that's no longer news so we don't hear as much about it as we did in the past.

And FB provides a huge stimulus to the economy by providing a means for Zuckerberg and all his cohorts to make billions of dollars off FB users by mining their data and selling ads. Notice that the rules continue to change as the project matures to allow more profit from the use of those data.

That's not to say that everything about FB is bad. Is there such a thing anywhere in the world as an organization, or a product, or a concept, or anything else that doesn't have both good points and bad points? I can't think of an example. As long as one utilizes the good aspects and avoids the temptation to indulge in questionable behavior, everything is copacetic. There may be a question about whether or not that's possible in the real world, at least in many cases.

But the absolute worst aspect of FB is that I didn't think of it first.

Tex