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"Weekends are quieter in the forum"

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Ulcerative Colitis
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Posted 6/12/2022 11:53 PM (GMT 0)
Exhibit A: June 11 & 12, 2022. LOL. I don't think I have ever seen a weekend go by without even one post. (And now this one hasn't, I have spoiled it!)
Posted 6/13/2022 4:44 AM (GMT 0)
LOL...nah 🙄

q
Posted 6/13/2022 12:46 PM (GMT 0)
I had family things this weekend. We also have much better medications now than when I got UC in 2005. We aren’t stuck in bed or on a toilet “as much” as when I first got it and there weren’t any approved biologics for UC at the time.

IBD don't need as much support as they once did. We used to have 3 or 4 pages of new posts each day.
Posted 6/13/2022 2:06 PM (GMT 0)
That's when we need the chat feature...

q
Posted 6/13/2022 10:04 PM (GMT 0)
Yea quiet around here. I now spend a lot of time on a facebook ostomy forum.
Seems there are more than one a day having there guts removed,lots of diverticulits,also
of course med failure IBD people.
Have picked up a few bag tips,skin care tips ect.
My current interest is how to fix diversion colitis from the oral side as opposed to enemas.
Some rectal stump people fail and end up getting rectum cut out,no thanks.
But have pretty much exhausted the medical literature. Perhaps not fixable,trying to supply
energy to the rectum cells from the blood supply side. Or toxins build up,or wrong bacteria are there,
peroxides,ect.
I also put info on this site in the ostomy forum,its really quiet there.
Other time spent trying to fix my Ulnar nerve damage from gut surgery.
Oldmike
Posted 6/13/2022 10:49 PM (GMT 0)
Yeah, things have slowed dramatically since I first joined. Still going thanks to some dedicated/passionate, long term veterans we all know and love who answer questions regularly.

Although it's a young person's illness and forums are a bit old-fashioned in the eyes of some. Find a lot more newer IBD patients on Reddit these days, which age demographic follows the illness. I help out there too as an indian brave and not a chief, which can be a kinda nice relief.
Posted 6/13/2022 11:29 PM (GMT 0)
Is it a young person's illness? I was diagnosed at 33 and I'm stuck with it for life (i assume...).

I don't use Facebook groups because I don't want friends knowing anything about my health situation,nor do I wish to share my photo/personal info etc with a bunch of strangers. Nor do I want my colitis/medical details logged inside Facebook for security reasons. But I guess I'm in a minority.
Posted 6/14/2022 12:34 AM (GMT 0)
Well there's a large ban of initial diagnosis in the teens and twenties, another ban in 60's. Obviously
UC is for life ;-)
Posted 6/14/2022 8:43 AM (GMT 0)
The onset of IBD follows a bimodal statistical distribution peaking at ages 14-16 and at ages 30-32. I recalling reading that upward to 75% of people are diagnosed between the 10-years 12-16 and 30-34. There are reasons for this in terms of hormonal re-balancing over these ages. IBD is roughly 50:50 between males and females in contrast to the rheumatic autoimmune conditions which can in places be 9:1 strongly tilted towards females.

UC is for life? Don't quite agree in the sense 'aging is for life' as well. In the advent of biologics it is now not at all a given that remission won't hold for good. The 'cure' for UC will come not at point of source but at point of treatment; with treatments becoming so good that they extend remission indefinitely. Modern medicine is amazing at symptom control and the breakthroughs have been staggering. Modern medicine has still done very little for point of source of most diseases.

In terms of the forum being quiet I think this is true of HW in general and online forums. More people now use Facebook equivalents and you get a much more diverse population there. When you have only a small group of senior members dominating then it becomes too 'local' the chat becomes too specific to what they feel is correct (see for instance that awful vaccination chat debacle last year) and you never then retain new members at the pace that the forum did in 2005 - 2016. Also I think there are only a few regular non North American users now...maybe myself and poppydoop and the person from spain. Get's tiring when the universe has to be focused on one country / area!
Posted 6/14/2022 9:33 AM (GMT 0)
Poopy I try and minimize personal details on Facebook no true birthday no picture never mention names of grandkids no pictures. In private ostomy group so friends never see posts. It's hard to believe the stuff I see going on with people's surgeries. I also learn a lot. One problem with Facebook groups is that if you post some medical literature that might help somebody it gets buried in the next hundred posts. One real good thing about this form is I can find info I posted 10 years ago quite easily. Oldmike
Posted 6/14/2022 4:49 PM (GMT 0)
I've just joined the forum in 2022, but I must say that I appreciate the respect and community in this space. It's been profoundly comforting to have a group of people who are really keeping up on the research and looking into things and sharing lived wisdom, checking in on long-time members who haven't posted in a while, advocating for each other and teaching them to advocate for themselves. The Facebook groups I've joined are SO huge and SO full of misinformation to sift through, it's just a completely different (and much more chaotic) experience.

All of which is to say, I appreciate the folks committed to this conversation.
Posted 6/14/2022 4:56 PM (GMT 0)
Damo...why stay?

q
Posted 6/14/2022 10:53 PM (GMT 0)
GrittyHope, glad you find it helpful. There's some good folks here who care and want to help when we can.

Perspective, there'd be multiple pages of new/updated posts each day a decade ago.

Agree there's lots of other places to post these days, and glad some of us are on Facebook, reddit, and other places to help out those in need. Always best to hear actual patient perspectives and outcomes. And gasteroenterologists visits are so short, 4-6 minutes talking to doc, that new patients are full of questions.
Posted 6/15/2022 12:34 AM (GMT 0)
Over the years. this has been the most helpful, informative, and friendly forum I've had the luck to stumble upon. People seem more consumed with other problems now, than with their UC. Just seems, since the covid mess began, the whole scheme of things has changed. One thing I do know...UC stays with us for life. It may hide for a while, but suddenly it seems to find the way back. I have a colonoscopy coming up this Friday. Last one was about 3 years ago. Since being on Entyvio, I'd been doing...ok...not in total remission, but ok. about two months ago, started a minor flare that just won't go away. Anyway....please don't give up on this forum. There are lots of 'lurkers' who really do get benefit from you guys. Stay safe and well all.
Posted 6/15/2022 4:54 AM (GMT 0)
If I may add, the perspectives expressed on this forum, particularly by those with long-term experience, have helped me greatly. I’ve learned far more about UC and treatments from users here - who also inspired me to do research for myself - than I ever have from my GIs.
Posted 6/15/2022 9:45 AM (GMT 0)
People might be diagnosed when they are young, but I see very often on this forum that someone posts "I was diagnosed x years ago and mesalazine always worked until now" - in other words, the need to escalate to stronger medications may come several years or decades after diagnosis.

I would love for there to be a cure, but I'm also realistic and have accepted I may be dealing with this disease in one form or another for life.

about the "awful vaccination debacle" first of all the moderators are nowhere near as active as they used to be (sorry ipoop, I think you'd agree you're not here as often as in the past...) so things spiral out of control for too long. Secondly in my opinion, the best way to resolve it is either to have a strict "zero vaccines" policy in the same way as there is a "zero politics" policy, or be active in removing misinformation. If I see misinformation I will point it out, but then it often spirals into a flame war as everyone gets more frustrated.

OldMike - I've been on facebook since 2005 and use it for personal reasons, which is why I don't want to mix it up with my health circumstances. I guess I could create a second account with no personal info for dealing with the latter. That being said, something someone else posted above about the thousands of posts and misinformation - I do remember having a read of one group that was not set to private and it had people posting things like "I've just been diagnosed with UC and I have 2 small kids, it's too young for their mum to die" and I thought I have no patience for that kind of misinformation.

I don't mind this being an american-centric forum. I have learned a lot about the US system which is interesting. I do get annoyed when people project the US system onto the entire planet, when things are sometimes run very differently elsewhere. Or assume that healthcare elsewhere is inferior, when it isn't.
Posted 6/15/2022 2:12 PM (GMT 0)
@poopydoop, in many instances members have no idea what country someone is from unless they say I live in ____. Many members do not know there are other meds that can be added to treat, then some are not comfortable asking a dr for other meds, the list can go on & on. Here in the states treatment is far from perfect & that is in all fields. I am a firm believer in advocating for my own healthcare. We have drs that bury their heads in the sand. For the most part people here try to help or share what has worked for them.

When the admin gave HW the facelift everything was cosmetic only. Nothing was improved on the system, to this day people still complain about it, lol. Chat was causing too many technical issues so the admin decided to do away with it.

Members will come & go on any public forum for a variety of reasons, HW is no exception to the rule. People pay Google to advertise, the views in all of the forums is what helps the owner keep some of his costs down. An example this thread has 15 comments with over 400 views. This is people reading, not everyone is interested in joining public forums. The people viewing help keep some of the costs down with Google.

The way I see it is, you can please people some of the time but not all of the time.
Posted 6/15/2022 4:31 PM (GMT 0)
It has slowed down which is sad..

One of the things I really like about this forum is that everyone can chime in.... It might be something that only works for them, or an observation that they have.... It gets the information out there. And then... When the old timers jump in to say "that didn't work for me or to be careful about this or that" that also helps immensely. I like getting the different perspectives.

I am always grateful for this forum and the people that have helped me....

Facebook.... No Thank You. They collect so much information... Plus on here you can see a set of individuals that are trying to help and avoid the drama.

On the moderators...Thank you for volunteering. It's so easy to think someone meant to say you should zig when they really meant you should zag...theres no tone so sometimes we misunderstand. There is an ignore button...but I just give people the benefit of the doubt, ask for clarification or apologize.

On the country, I try not to assume everyone is in the US. I do find it fascinating what other countries use for IBD and what the people that live there think. I sometimes want to ask but am afraid to offend.

This place is in my comfort zone. I do wish more people would check back in though.

Clo
Posted 6/15/2022 6:16 PM (GMT 0)
While were on the subject. Are posts we make here supposed to be findable on google.
I searched oldmike colitis and came up with this
https://www.google.com/search?q=oldmike+colitis+site:www.healingwell.com&sa=x&ved=2ahukewjd0cqyi7d4ahvvq4kehfajbx8qrqiobhoecacqbq&biw=1366&bih=633&dpr=1

Oldmike
Posted 6/15/2022 7:01 PM (GMT 0)

Old Mike said...
While were on the subject. Are posts we make here supposed to be findable on google.
I searched oldmike colitis and came up with this
https://www.google.com/search?q=oldmike+colitis+site:www.healingwell.com&sa=x&ved=2ahukewjd0cqyi7d4ahvvq4kehfajbx8qrqiobhoecacqbq&biw=1366&bih=633&dpr=1

Oldmike

Yes, they are indexed. It is one of the reasons they tell us not to use our real names on the forum.

If this was a website in the European Union then we could ask Google for "The Right To Be Forgotten".
Posted 6/15/2022 8:22 PM (GMT 0)
Susie - yes I understand. What I was referring to was e.g. there have been posts saying the FDA is more careful than European counterparts. Or people making statements about Big Pharma and how medical research is funded when things are done differently overseas. Well that's annoying of course but I don't think it's a factor that deters people from posting here. I never assume anyone's background when they post here, but the terms they use (e.g. GI vs gastroenterologist) and especially when the discussion is about insurance will usually make it pretty clear if someone is in the US or not.

Out of curiosity- is the view counter unique views (i.e. different IP addresses) or does it go up by 1 every time one of us re-visits a thread?
Posted 6/15/2022 10:46 PM (GMT 0)
@poopydoop, I understand exactly what you are saying about the big pharma & medical research junk. I can remember just a few members that are not in the states but not all of them. However, when I see the word "consultant" this is my indicator they do not reside in the states. I belong to another forum & it's the same there too.

Every time we visit a thread it does count, if we click a thread 10 times in a day it counts. You can also look at the bottom of the main page & it will tell you how many members are online & how many visitors are here.
Posted 6/16/2022 4:38 PM (GMT 0)
IMO HealingWell is more quiet because sometimes the moderators cross the line from moderating threads to censoring posts they do not like. Last year I tried to post in a thread about Covid a quote from Anthony Fauci, America's top medical consultant, who said that Covid vaccines neither prevent infection or transmission. I made no mention about controversial therapeutics or whatever, just trying to quote Dr. Fauci.

That is common knowledge now but at the time nobody wanted to hear it. Three times I attempted to post Fauci's quote and three times it was deleted.

Sometime last winter somebody started a thread on functional medicine and how functional medicine has helped her manage UC. That thread wasn't just locked but completely expunged from the internet even though it attracted a lot of activity with about two dozen posts attached to it.

Post Edited (IamCurious) : 6/16/2022 2:43:50 PM (GMT-6)

Posted 6/16/2022 6:06 PM (GMT 0)

IamCurious said...
IMO HealingWell is more quiet because sometimes the moderators cross the line from moderating threads to censoring posts they do not like. Last year I tried to post in a thread about Covid a quote from Anthony Fauci, America's top medical consultant, who said that Covid vaccines neither prevent infection or transmission.

That is common knowledge now but at the time nobody wanted to hear it. Three times I attempted to post Fauci's quote and three times it was deleted.

THREE TIMES?? You’d think that you’d learn after the first or second time. Could have been because of everything you posted. I seem to remember you posting a lot about Hydroxychloroquine and horse paste to treat a virus.

Attacking the mods is kind of against the rules of the forum.
Posted 6/16/2022 7:49 PM (GMT 0)
Moderate too much, too little always a get bonked regardless. Watch it though, forum rules and all.

In my opinion COVID, vaccines, complaints about big pharma, and other such things have no place here. This is an UC forum, not for everything and anything vaguely medical related and one's fierce opinions on said OT things. Just seems like a recipe for infighting and disaster when deeply held, opposing beliefs go head-to-head. There's a number of mods who keep the peace here, best we can.

Yeah I'm not here as often as years ago. Traffic's a lot lighter, doesn't warrant as much attention.
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