Trekkie Monster

community news Closure of Ostomyland Facebook Group

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http://www.ostomyland.com/ostomyland/2015/04/01/closure-of-the-oland-facebook-group/

Regrettably this is not an April Fools joke.

Please note that with immediate effect our Facebook ostomy support group has been suspended due to what can only be described as trolling. We asked members to please post their ostomy/stoma pictures in the comments section of their posts so that people do not get to see them in their news feeds as it was upsetting them. We hadn't banned any  pictures, removed any pictures and all types of pictures were still allowed. This is a very common rule in ostomy Facebook groups. Not all have it but a good number do.

I personally thought it wasn't too much to ask of people but apparently it was as people started to do the exact opposite asking what's wrong with a stoma etc (which the answer is nothing wrong which is why we didn't ban the posting of pictures just asked for a little bit of consideration and help) and this en-masse posting just ended up antagonising the situation. In the end people were reporting photos to Facebook and this too was being abused as that system is anonymous so it's impossible for us admins to try and resolve those matters.

Worst of all though was the language and the insults flying by both sides of the "debate". On top of this the admins were being abused and harassed in group and in private messaging. Racial slurs were even made against one of our admins. Repeated pleas for it all to stop by me were ignored and members were banned. Ultimately this did nothing and the situation spiralled. After talking between ourselves the admins felt there was no option but to close the group down. As this is being written members are being removed alphabetically from the group as Facebook doesn't allow for a one button delete on a group? Instead all members have to be removed one at a time. When there's 250 members left we can suspend the group. In the future we hope to re-launch the group and more details on that will be announced when available.

I've said all along that Facebook groups Admin controls are just insufficient to handle large groups especially when something like this happens. This whole situation proves that matter.

It's a very sad day for Ostomyland and frankly I'm ashamed of the behaviour that occurred in the group. I'm devastated that it had come down to this. The group has been open approximately five years, maybe longer and all that is for nothing now. No doubt the people involved are having a good laugh and think it's funny to do this but in the end they've killed the very group that probably helped them and/or have certainly stopped the group from helping anyone else via that format. Thankfully the message boards here still exist and are open as to is this site itself with all its information.

I'm sorry to post such bad news but it was not a decision made lightly. For 18 years I've run Ostomyland and never has something like this happened. Any problems that arose were resolved with common sense. But that has not been possible over the last 48 hours despite two of us stopping up overnight to try and resolve the issues. I feel like I've been stabbed in the heart by the very people I've been trying to help. One little request for some understanding and help from the members so that both sides could continue to enjoy the group's support was just too much to ask for it seems. And that is why for the first time ever I'm shocked and actually ashamed of Ostomyland and to all the innocent members who have been caught up in this I can only offer my sincere apologies for what has been hitting your news feed over the last two days.

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Devastating news - took me ages to get used to FB but it was a great help, especially through latest surgeries etc.  I don't quite understand what happened over the last 48 hours that was different to the major slagging matches earlier this year, but I wish to express sympathy for the poor admins that have had to deal with the situation.  It seems from a users point of view, that images were only being posted in comments nowadays but maybe posts were being removed before we got to see them.  Either way its a shame we've lost all the archive material and I trust the forum here will now see increased use again and may therefore be less likely to abuse by outsiders.

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The whole thing was just so maddening!

 

I had posted a bag picture about a day before all the $hit hit the fan so to speak. I didn't know it was a rule only because I saw so many others posting photos. The no photos in main post wasn't even that big of a deal - people just went crazy.

 

I am so sad to see it go though as I spend most of my online time on FB and was getting such great advice and support there.

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Hi Annee, I totally agree. At the same time we're not blameless. I probably could have handled it better as tiredness and exasperation were taking over by the second evening of it with the photo reporting, probably even desperation too as we (the admin's) could see where things were heading.

I can see both side of the argument, I'd even commented on a number of the pictures when I had a minute saying how great they looked. Maybe it was the sheer number of pictures that for posted over those for our five days where people gained confidence in sharing their pictures which meant more appeared in the news feeds and it all just got a bit much for them, I don't know. Anyways we live and learn.

The group is going to reopen in the near future. Now the membership level has been trimmed down to below 250 we could lock the group. If only Facebook gave groups such a basic tool as moderation lock then this could all have been prevented by locking the group and letting everyone calm down. Quite where they get the logic that only groups with a sub-250 members list can lock themselves is beyond me.

Anyways we've had resounding support for what we've done with a few negative messages of course. We've got a long list of people waiting to rejoin which is really nice - nowhere near 2500 of course but a lot of those were inactive numbers anyway so it will be nice to get things up and running again in a couple weeks time... Maybe even sooner I hope.

The team is having a break over Easter now to recharge then we're cleaning the contents up a bit, hopefully having a new Admin or two as well then we will be reopening. I'll announced the opening here and on the main ostomyland.com website. So keep your eyes peeled Annee if youd like to rejoin as you are very welcome back again.

Thanks for your support, it means a lot to us.

Jason.

(Sent via mobile device, please excuse any typos).

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Hi Jason and all Admin, 

 

it's been quite a while since I've visited the website, well since I joined the FB group 12 months ago.

 

     I think it's very sad that you have had to close down the fb group because of some selfish individuals.

 

I don't know what is wrong with people these days, :( a couple of other groups (crohns groups) I have been in have had similar issues goings on .                                                                                                                                                                                                                                       

What people gain from this I will never know? these are supposed to be support groups but some people are hell bent on upsetting everyone else.

 

I look forward to your new fb group, but don't rush into it Jason, take your time.  Give yourself a rest.  I know you put so much into this forum and the fb group and I support you all the way.

 

                keep up the good work :)

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I was very devastated by the FB group closing. It had been such a help to me since my ileostomy surgery on 12/29/14. But I completely understand that things were getting way out of hand and something needed to be done. I am happy to know that you will be re-opening a group at some point and I can't wait to join it. In the meantime, I will figure out how to use the forums and get my guidance and advice from here. Thank you for all that you have done, Jason. Had the FB group never been created in the first place, I don't know what I would have done in the weeks immediately following my surgery. 

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@, Just go ahead and add a comment to an existing string or start a new subject, the response in here is a slower pace but you will get responses and there is help available and the existing strings and categories are like a library. It takes a while to get used to but it works, and if you want to revisit something you don't have to scroll forever to find something from the past.

I'm hoping the FB will be back up after a while also.

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Thanks Jason!

 

I'll be looking for the news on a new group. Enjoy your Easter!

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It's a shame it came to this. Although I posted very little I learned so much from the fb group and look forward to it starting up again.

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I miss the facebook group a lot...it definitely gave me a sense of belonging as I am still new to this. Will there be another group? Can we ask questions on this website??

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@Melis712, As Laurence said, you can ask questions in here.  Even if you are just reading an old thread and asked a question at the end of that thread it will post up in the post board on the main page as a new post and people can click on it and read it and answer it if they have an answer.  It will stay there in dark print and not get scrolled down as fast, most days anyway and if it is answered it will go back up to the top of the comments list. You can also start a new string, new post.  I was on facebook ostomyland also, and this group is not as chatty but the content is easier to track if you are trying to do such a thing.  Welcome and good reading.

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Yup you can ask any questions you like. The forums are split into dedicated message boards, so you'll see section about colostomies, ileostomies, etc as well as issues that effect the stoma such as diet etc.

 

The huge benefit of the forums over Facebook is that you can search the forums.

 

If you are unsure on where to post your question then the General Ostomy Support message board is as good a place as any and it gets the most visits. You can find that here: http://www.ostomyland.org/ostomyboardipb/forum/7-general-ostomy-support-issues/
Look for the black START NEW TOPIC button to open a new post to ask your questions in. The forums database is currently approximately eight years old so theres a LOT of questions already been asked and a lot of information that people can review. It's also showing its age though and getting a bit messy. The new version of the forums software (Invision Power Suite) comes out in the very near future and that will be a huge transformation, most importantly making the forums far more mobile-device friendly.

 

Re the Facebook group itself some of the admins, inc myself, have still been working away on cleaning the group out, sorting out how to relaunch, arranging some new admins and trying to find ways around the one-pinned-post issue and what to do should malicious photo reporting rear it's head again in the future, and I think we've almost got those issues resolved in our heads, in theory. So, with a bit of luck and strong winds we should hopefully have the group open next week - that's my target anyways - but there's still a lot to do. The good news is that all the admin team is excited about relaunching, the distress and disillusionment of closing day has been pretty much replaced with a passion to see the group recover. 

 

People might also be interested to know that since the attack on Ostomyland's group that other ostomy support groups have found their users photos are being maliciously reported to Facebook for no good reason. So it looks like one or two sad people are going around trying to cause trouble / trolling for the groups. But it's possible that those other admins have been given a clue on whom it might be. We shall see.

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I really don't get it, Jason.  Why can't people just play by the rules and get along.   This main forum is so supportive.  Unfortunately, that's not completely the case on facebook.  But, then again, by it's very nature, facebook seems to attract this kind of behavior.   Most people act fine, but there are always a few who are obnoxious.  I can't believe some of the way people treat each other.....the names they call each other and the language they use.  It's really pathetic.    I hope they never come to the boards........but I guess it's easier to control the boards.   

Good luck to you.   We're all here to support, not tear you down.  You do a fantastic job.  Keep it up.

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I look forward to the FB group starting up again!  I was just starting to get comfortable and posting more right before this happened.  I used to  visit this site a lot but haven't much lately.  I really appreciate what you do and I am so sorry that you had to go through this mess.  I saw some of the posts from the debate and couldn't believe people were making such an issue over a simple rule.  It would be nice if people could just be considerate of others and get along!  Thank you for what you do!!!

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Well Jason,

I never cared much for fb but I do care about people who need support and some companionship through rough times such as acquiring an ostomy. I know you work very hard at helping others get this much needed support and I feel sad to hear there was an issue within your group. I do however have much faith in your ability to get things up and running stronger and more successful than ever before. Enjoy the much deserved rest to regroup!!

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