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why do we have the most active forum?

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Ulcerative Colitis
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Posted 1/25/2012 3:39 AM (GMT 0)
i've been thinking about this for a while and i've come up with 3 reasons:

1) So many more people have U.C. than the other diseases on this site

2) It's not something people like to talk about in person so we come on here to feel unjudged and safe

3) It's more of a pain in the ass physically and mentally than people without the illness might think

anybody else think about this?

Posted 1/25/2012 3:58 AM (GMT 0)
I've thought about it too, your reasons seem to fit well, I was also thinking about how we would rather be glued to our own toilets than someone elses. So we spend more time at home if we can and find things to do, like post on discussion boards online. I think with this type of condition there are so many things that are shared among people rather than doctor to doctor. We look for other methods of treatment rather than just medication, which is typically acceptable if you have other diseases (maybe, i'm not sure). I enjoy others company on here because we can all sympathize with each other's problems well and we hope to offer advice on what works for each of us, even though alot of what helps one person, might not do the same for another... ;/
Posted 1/25/2012 5:50 AM (GMT 0)
The crohn's forum is pretty active as well, I think a little while back someone compared the UC and CD forum and found the CD forum to be a little more active than the UC forum....don't know if that's currently the case or not.

I figure we have a lot of "crap" to talk about compared to the other forums LOL!
Posted 1/25/2012 12:06 PM (GMT 0)
Both the Uc and Cd forums are the busiest on HW. It has been that way for a long time. I think it's mainly because like you said, having an IBD is not an easy thing to talk about. No one wants to talk about their bathroom habits at the dinner table nor does anyone want to hear it. But on here, it doesn't matter. It's anonymous and you have a sounding board.
Posted 1/25/2012 12:41 PM (GMT 0)
Oh ahah yes a lot of crap to talk about!

Yes I agree with everyone that its not an easy subject to talk about and to be quite honest poeple who hasnt been in contact with it have a hard time understanding it!

And if you do share a bit more most of them will suggest a diet or just say well can you hold it for a minute until we find a toilet?

Everytime i tried to explain my situation to someone it wasnt leading to any conclusive undestanding wich is quite frustrating. And re explaining it again and again kind of make me feel annoyed and undignified.

Its such a complex condition with so many options and outcomes that how can we expect healthy ones to get the full grip of it when ourselves dont always understand it? No wonder we wander here to find some answers and share experience!
Posted 1/25/2012 4:30 PM (GMT 0)
I agree with your assessment and with the points others have raised. I think stereofedelic has a good point that many are actively seeking therapies - because existing treatments are ineffective for SOME, and because what works seems to be so individual. (I also love the point about being glued to our home toilets rather than someone else's - it could explain a lot about the time to go online.)

I have really benefited form having o community of folks with similar problems and frustrations and fears. There are things non UC'er - even family - just don't get. Thanks guys.
Posted 1/25/2012 4:44 PM (GMT 0)
I think it's because there aren't other forums that are as good for UC. For breast cancer, for example, breastcancer.org is way more informative and active than the forum on this site. But most UC forums that I've found aside from this one are sponsored and moderated by drug companies.
Posted 1/25/2012 5:14 PM (GMT 0)
I just like it here... :)

When I first started chatting on this forum I didn't know what I was looking for honestly... I had just been diagnosed and didn't understand alot of what I was told. I stumbled into here and was welcomed with open arms.. also, the amount of suggestions and alternative treatments were a huge help for me. Super great advice and explanations and support!
Posted 1/25/2012 7:16 PM (GMT 0)
Hmmm I agree, since this disease takes over your life, it's hard not to talk about it, but no one seems to understand just what it's like. On here it's so different. I hate to say it but in a way I'm glad so many have it as I would feel alone without this place otherwise.
Posted 1/25/2012 9:05 PM (GMT 0)
I wonder how many folks post on a laptop or tablet from the john?

Post Edited (wodin) : 1/25/2012 4:22:03 PM (GMT-7)

Posted 1/25/2012 9:49 PM (GMT 0)
Good question.  I have thought about that too.  I know one thing I'm so glad for the people that are active on this forum.   When I was first diagnosed I searched the internet for forums concerning Ulcerative Colitis.  I needed someone to talk to and ask questions.  No one in my family has it.  I never heard of it.  When I did try to talk about it with other people they didn't understand.  Here everyone is so great.  It's nice to have someone who understands you. :-)
Posted 1/25/2012 11:52 PM (GMT 0)
just a bunch of fine, intelligent, insightful, inquizative, and really good looking folks -

plus this site is really good for a few laughs - mostly at ourselves -

:-)
Posted 1/26/2012 12:27 AM (GMT 0)
It boggles my mind how many people suffer from IBD. :(
Posted 1/26/2012 2:37 AM (GMT 0)
We are the most interesting people in the world -thats why
Posted 1/26/2012 4:20 AM (GMT 0)
My opinion? Because UC has become a very common diagnosis. I, again in personal opinion, think that this is probably due to a common factor, such as genetically modified food, or specifically, wheat. Time will tell if this pans out, as I think it could be on the path to epidemic proportions. Let the love begin.
Posted 1/26/2012 11:24 PM (GMT 0)
I think that we can just be ourselves,talk about all our highs and lows with absolutely 100% understanding no matter what
Also about OT and other things to do with every day life
I know I feel at complet ease here and say things that I would like to say but don't when talking face to face I could not say
And no one can really understand unless they have been through it to
Help is always at hand and go a long way to make bad days easier
A big hug to everyone as everyone special here
That's why its so busy I think
Posted 1/27/2012 5:51 AM (GMT 0)
Because we try to give one another very practical advice, along with empathy and good humor. We are all together in this mess called UC-- just a few clicks on the computer give us companionship when we need it. So many thanks from myself to all you great "listeners"!!!!!!!! / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 2/1/2012 7:05 PM (GMT 0)
bananagirl - coincidence that the most correct answer to your question is NUMBER TWO? I think not.
Posted 2/2/2012 1:33 AM (GMT 0)
I sought this site out because my doctor didn't tell me anything but "you need to take this medicine". idea I've had to figure everything out myself from here and the web.

I also agree that the topics we discuss is easier here than face to face with someone. :)

Halo

Posted 2/2/2012 4:37 AM (GMT 0)
I'm on here because my GI sucked and taught me nothing on my disease and I needed answers. And also, like other people have mentioned, this isn't something you can talk about at the dining table. I know a lot of people in my family get disgusted by it. I'm glad you guys aren't grossed out! We can all relate :) Also, it's hard for people without this to understand how horrible it is at time. I still haven't told my best friend about this because I'm embarrassed by my UC. Also, when you tell someone you're on steroids they think you'll turn from a woman into a man and steroids are associated with athletes misusing them and what not. So it's hard to talk about medication in that sense. Same with enemas and supp.
Posted 2/3/2012 5:48 AM (GMT 0)
Because UC sufferers are funny.

We are funny because sock puppets are funny.

Who understands the life of a sock puppet better than a UC sufferer?
Posted 2/4/2012 4:09 PM (GMT 0)
Noah_Bodie:
Not only are we funny, but MANY of us (you mostly) are weird too.
Bbwwwhhhaaahhhaaahhhaaa
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