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This sure is one weird website!

Posted by w30bob, on Wed Jul 10, 2019 10:38 am

Hi Guys,

  Not trying to imply it's a BAD website, quite the contrary.  But it's a bit abnormal compared to the other sites I frequent in that it's a bit confusing.  There's messages, a forum, blogs and who knows what other ways to communicate.  As a free member you have access to some of those things, but not others, and if you post a lot you get a free month of full access.  All a bit wacky if you ask me.  I don't even see the difference between a forum post/discussion and a blog...........can someone enlighten me?  Also seems like everyone says in their profile that they want to talk and meet folks with the same issues, etc.........but there's not much communication going on.  Again, all sort of weird.  Certainly has the potential to be a really outstanding site, but seems hindered by the format a bit.  Not sure what's holding everyone back from actually communicating with each other like everyone says they want to do.........maybe most just want to read about other's issues and not actually discuss........I'm not sure.  But I'm glad I found this site, maybe just wishing it were a little more active.  But as usual, I need to be careful what I wish for.

 

;o)

 

regards,

bob

Reply by Bill, on Wed Jul 10, 2019 3:28 pm

Hello Bob.

Welcome to the MAO website. For a newbie you seem to show a great deal of insight into the workings  ( or mlfunctions) of the system. Many of the issues you raise have crossed my mind over many years so it's good to have them illuminated in a frank and honest way. I tend to be chatty on this site and therefore often get a 'free-membership' which I have never seen the use for as almost all my correspondence is in the public domain and if someone wants to message me then I am offered the right of reply. 

I can post on blogs or the forum. most of my own blogs have been in the form of rhyming verses, which may or may not attract comments from others. This iseems to be essentially what the forum is also about. My take on the two is that the forum invites comments, whereas the blogs (for me) are just personal mental meanderings which are not necessarily read or responded to.

There have been lots of past posts about why some people choose not to correspond and others do so prolifically. Your guess appears to be as good as anyone elses in this regard.

Anyway, It's great to have you on board and I hope you are able to liven up the correspondence in ways that suit your interests.

 

Best wishes

Bill

 

 

 

Reply by iMacG5, on Wed Jul 10, 2019 3:39 pm
w30bob wrote:

Hi Guys,

  Not trying to imply it's a BAD website, quite the contrary.  But it's a bit abnormal compared to the other sites I frequent in that it's a bit confusing.  There's messages, a forum, blogs and who knows what other ways to communicate.  As a free member you have access to some of those things, but not others, and if you post a lot you get a free month of full access.  All a bit wacky if you ask me.  I don't even see the difference between a forum post/discussion and a blog...........can someone enlighten me?  Also seems like everyone says in their profile that they want to talk and meet folks with the same issues, etc.........but there's not much communication going on.  Again, all sort of weird.  Certainly has the potential to be a really outstanding site, but seems hindered by the format a bit.  Not sure what's holding everyone back from actually communicating with each other like everyone says they want to do.........maybe most just want to read about other's issues and not actually discuss........I'm not sure.  But I'm glad I found this site, maybe just wishing it were a little more active.  But as usual, I need to be careful what I wish for.

 

;o)

 

regards,

bob


Hi Bob. I think there might be some “private” messaging taking place. Some folks might have been reluctant to tell all to all and are more comfortable sharing privately. Only certain folks would care if another lived at 123 Onth Street in Twotown Minnekonson. Then again, some folks disappear after their problems get fixed. Who knows? I’m just happy those of us who are here stay so we can continue to share and learn from each other.
Mike

Reply by kmedup, on Wed Jul 10, 2019 5:18 pm

Hi,


This morphing website format is definitely a challenge. One of the oldest adages in existence is you can't get something for nothing but in this case, many are enjoying this site for free. Ditto on not much communication going on, expect for the dedicated ostomates who keep trying. Kudos to their persistent efforts. And yes, I am often one of those who reply privately.


Human beings necessarily depend on one another, as realistically, it is difficult to manage this ostomate condition by yourself; no "person" is an island. I am not sure what the answer to your comment is w30bob … so … let’s put a challenge out there…why do many of the ostomates on this site, who want to communicate, stay silent? Let's up the ante and go for a record number of replies!


Karen

Past Member
Reply by Past Member, on Wed Jul 10, 2019 8:55 pm

Mmm, 

  Hi folk, I have a bad feeling if I say what I, or others think of this cluster copulation up of a site is now, this post will

be removed, not the first one by any means, bless dictators.

So many things to say but the omnipotent administration gawd is upon us all.

Do/can (can!! uk 2019) I give my real name, is that allowed by 'gawd', can I say my address or just not my email address, can I give

someone, out of personal choice, my house or tel. number or is this a major security issue or the fact that folk may not

have to deign the site gawds with more money to communicate, not too shabby lol for a site that's allegedly to inform, help and

communicate with each other thro' shit et.c, no pun.

So far lol, I have a lifetime membership, in the past I have paid for other folks memberships. Two yrs ago ish I

asked for discount each time I, we then, paid, the Greedy answer was no, since then I would have paid for many

of folk that were trying to help others but I do not feed greed.

Hey ho, no doubt this post will disappear as quick as medical records in a lawsuit. At least I record posts that I think

may dissapear, when I get booted the site sponsers can have a jolly good read and see what is really occurring.

How many undated pics of folk that are shown are still active or still alive! Sad, false advertising on a good day lol.

 

I agree Bob ( hi Kmed, Bill & Imac, for now) , there are better less greedy/manipulative similar sites are out there.

 

All good fun, best wishes folk

steve

Reply by kmedup, on Wed Jul 10, 2019 10:54 pm

Hi Steve,

There will never be change without honest opinion - like yours.

I never thought of many of the things you said; thank you for showing me a different side. So, not - "my bad," but "my just got schooled."  Hearing all sides is a wonderful tool:)

Karen

Reply by Puppyluv56, on Wed Jul 10, 2019 11:08 pm

Hi Bob,

agreed! This site is confusing. Somehow people think it is a dating website and are looking for Their solemate. Not sure where that came into play but I was saved by a few great people on this site that told me what they experienced and how they handled it. They helped me through the irrigation process as I now try to help new people to do this things as well. Sometimes life gets in the way of coming to the site as often as most would like. I know some have left the sight just due to frustration or some ugly comments. Sometime some unpleasant things are said. All in all, there is more here than you get from an Ostomy Murse that has never has an Ostomy. They can relay information but only if you have been there can you provide facts! 

Reply by iMacG5, on Thu Jul 11, 2019 12:19 pm

I think Puppyluv says it best when referencing others’ experiences and how they handled them. Lots of us were lost when we first visited this site and became good at doing our stuff with the help from others. We sometimes hear folks say, “I feel your pain”. They don’t. Our pain is ours alone and different from anyone else’s but having similar experiences makes everything so much more relatable. It’s a great thing to share with others to make things better for all involved.
Hope we keep it together and make it even better.
Mike

Reply by w30bob, on Thu Jul 11, 2019 6:50 pm

Hi Mike (and all those that replied),

  Thanks for all your comments.  Let me be clear, I'm not saying this site is "bad" or denegrating it in any way......just saying the format is a bit odd compared to all the other forums I've been on or am currently on.  Most forums have only two ways to share info.....you either post or reply to a topic that everyone has access to......or you send and receive private messages.  That's it.  Here I'm not even sure I can find my way back to something I posted because I'm not sure if it was a blog, a forum post, message, private message.........who knows what else?  Just seems way to elaborate for such a simple task as getting folks with something in common together to discuss.  I'll tolerate it just like everyone else because the good far outweighs the bad, but if whomever runs this forum is looking for feedback this is mine.  Simplify.

;o)

 

thanks,

bob

Reply by vulcanBMk2, on Tue Aug 20, 2019 10:41 am

I've been posting on here for about 12 yrs , both as paid & guest member.. Its always  been a  bit confusing . It gets better after a couple of wines & a large Vodka.  Dating site ??  I'dbetter  see if my  credit cardwill stand the £££ equivilent  of 50 $$   & that  I renew my passport,,,,, 

 

Stay well & take care folks .......Pete .....

 

 

 

Reply by iMacG5, on Tue Aug 20, 2019 9:31 pm
vulcanBMk2 wrote:

I've been posting on here for about 12 yrs , both as paid & guest member.. Its always  been a  bit confusing . It gets better after a couple of wines & a large Vodka.  Dating site ??  I'dbetter  see if my  credit cardwill stand the £££ equivilent  of 50 $$   & that  I renew my passport,,,,, 

 

Stay well & take care folks .......Pete .....

 

 

 


Always good to here from you, Pete.  Never tried wine with the large Vodka.  As long as it was 100 proof almost any beer would appropriately handle the Russian stuff.

Wish you the same,

Mike

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