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This board is miles busier than the Crohn's one

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Ulcerative Colitis
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Posted 1/17/2013 9:38 PM (GMT 0)
There's, like, new replies. Every time I come here.

Oh well, I have Crohn's colitis on top of a stricture in the terminal ileum, so that partially counts, doesn't it? *resounding silence* Doesn't it...? ;_;

On the plus side, I'm getting quite skilled at distinguishing colitis symptoms from stricture/general Crohn's ones. Right now I'm suffering more from colitis. It obviously takes the longest for Pred to clear up; I wish it would hurry up and do so skull
Posted 1/17/2013 10:10 PM (GMT 0)
Yes we are very busy here and having Chrohn's colitis counts in my book.

Feel better.
Posted 1/17/2013 10:16 PM (GMT 0)
Cheers, sherbear :p
Posted 1/17/2013 10:24 PM (GMT 0)
NCOT have you thought about try FT? I know of a guy who treated his crohns colitis very successfully with FT. He had full remission for 2 years; flared last August; did FT again and in remission again. Just a thought.
Posted 1/17/2013 11:09 PM (GMT 0)
I don't think anyone I know would be prepared to donate me their poo <_<.

My next step is to have surgery anyway. It's possible that something I haven't tried might yet work, but I'm fully Pred-dependent (with a moon-faced, tearful, hunchbacked cherry on top), and I cannot bear the pain and all the rest of it for the next few years while I search for them. So I'm just gonna get a panproctocolectomy and hope to have a few years of respite - should be hearing from the surgeon's secretary about a date tomorrow.

Thanks anyway - FT is worth a try for colitis (and stubborn c.diff especially), but for me alternative therapies have come too late. I should've tried all this **** sooner if I was going to, but my flare-ups weren't as bad then, so not as much motivation to: catch 22 :-/
Posted 1/18/2013 2:22 AM (GMT 0)
You poor thing. Would you try antibiotic therapy or something along those lines? That could be a quick fix if it worked for you.
Posted 1/18/2013 11:08 AM (GMT 0)
NiceCupOfTea... welcome to this forum. It is definitely busy, and full of sympathetic and knowledgeable people.

We can empathize with your situation. There are people on here in remission, people struggling to find the right treatment, and people that have had their colons removed.

Feel free to vent on here. We've all got issues and can relate in some way! (Sadly, I guess, lol... but it's comforting :) )
Posted 1/18/2013 1:08 PM (GMT 0)
I've noticed this too, as I read both boards...Sometimes my whole page is filled with replies from the current day on the UC board and the CD board may only have 2-4 replied to threads on the current day.

Any time I have a question or piece of information that could go on either board I instantly head to the UC board to post it.

Any theories why this is?

The one I have is the other forum that Crohn's users frequent that I know of could split the posts. I don't know of another large UC community but there could be one to negate my theory.

Posted 1/18/2013 1:21 PM (GMT 0)
Any theories??? Sure! It's because we are a gabby, supportive and funny forum! :D
Posted 1/18/2013 1:24 PM (GMT 0)
try the heart forum - i think they've all gone on a nice long vacation - with their eyes closed - next time i decide to try a new disease, i'm gonna check the number of posts first -
Posted 1/18/2013 1:24 PM (GMT 0)
It's much busier than the IBS forum as well. I don't have the UC diagnosis but everyone here has been so nice, I've been able to glean info on diet and probiotic usage, along with cholestyramine advice.

So I've noticed how much busier this forum is too. It's become my go-to Healing Well forum.

Mary/Marsky
Posted 1/18/2013 1:46 PM (GMT 0)
Any theories why this is?

It is the way the Crohn's forum was moderated. But the admin recently initiated reforms so I believe that it is only a matter of time before the Crohn's forum will become just as popular as the UC forum.

IMO some of the moderators were out of line with "moderating" posts that they personally did not agree with. For example, just like here on the UC forum, the CD forum allowed many entertaining Off-Topic (OT) posts about everything from fiddler crabs to someone's vacation experience.

But when I tried to post a thread showing recent medical evidence indicating that President Kennedy's health problems may have resulted from Celiac disease my thread was immediately locked for being "off topic"! I later posted this same thread on the UC forum and it was praised as evidence that diet may have some effect on stomach issues. But on the Crohn's forum anything that threatened the supremacy of their beloved meds was considered off topic.

Things are much improved now. One of the reasons why HealingWell is one of the best forums on the internet is because the administrator works hard to keep it fair and balanced.

Post Edited (BabeintheWoods) : 1/18/2013 4:08:22 PM (GMT-7)

Posted 1/18/2013 1:52 PM (GMT 0)
Marsky, since being appointed co mod to the IBS forum...I'm going to try to get it hopping :)

Here on the UC forum, I try to keep things balanced. I feel that ALL treatment options can be freely discussed. That whatever works for you is great!

OT posts are allowed up to the discretion of the mods and as long as they follow the forum rules, I have no issue with them.
Posted 1/18/2013 1:58 PM (GMT 0)
I think some people came and some left after the moderator change, as usually happens. Maybe we're just whinier?

Actually, I feel like there are a lot of us here who have left-sided UC or just proctitis. My GI used to tell me that he thought those were the two most difficult to control types of UC. Pancolitis is more serious, but left-sided seems to be more persistent.

Plus, we always have a vigorous holistic vs. medical vs. surgical treatment debate going on. Because surgery can be a cure for us, it's always something hovering there in the back of our minds.
Posted 1/18/2013 4:18 PM (GMT 0)
I come to the UC forum to hear and share about diet and alternative treatments since this seems to be very pertinant to IBS/UC/Crohns. It is a nice to be able to speak freely about ideas or simply listen to those who have tried something not so mainstream...yet! I also think this is how successful treatments can be discovered.
Posted 1/18/2013 4:41 PM (GMT 0)
It seems to me that there is more research on crohn's and meds that work,such as biologics, so we are
left to experiment on our own. Back in 2000 Remicade was off label for UC,so if you fail colon rescue therapy it is out with the colon. UC people face the ultimate cure for UC,colectomy,so we tend to try anything and everything to avoid the surgical cure.
Since we experiment so much,I might guess we like to talk about it a lot.
I would hope at some point the massive internet connected brain will find a solution.
PS:Some may not agree that colectomy is a cure,at any rate mainstream medicine does.
Old Mike
Posted 1/18/2013 6:23 PM (GMT 0)
I pop into Chrohns and the IBS forum every day. If I have any info to share I do. I also have no objection to OT threads as long as rules are followed. I personally like some of the topics. Sometimes we need a good laugh or vent or whatever.
Posted 1/18/2013 10:11 PM (GMT 0)
"But on the Crohn's forum anything that threatened the supremacy of their beloved meds was considered off topic. "

lololol
Posted 1/18/2013 10:20 PM (GMT 0)
Woah, replies! :p

I'm a bit braindead today, to put it mildly, so my reply may be even more rambling than usual... <_<. On a serious note, I think the Crohn's and the UC boards used to have roughly the same amount of posting activity, but over the last year or so the balance has changed. Partly the UC board has just simply got busier. But also the Crohn's board got quieter, partly for reasons BabeintheWoods nailed. I don't want to stir anything up, but I largely agree with his analysis. However, because the two mods who got demodded were popular, some of the old-timers left in sympathy and to this day have not returned. Personally, I thought the way they received the news was harsh and displayed a lack of people skills at the time, but there you go. One moderator was still ripe for the demotion, in my opinion. Because if BitW was correct about one thing, it was that too many debates were being stifled at source. Plus there was a ridiculous policy of closing threads as soon as they reached the 3rd page - absurd, that's the sort of behaviour which also kills off discussion and, in the long run, posting activity.

I do think the Crohn's board is picking up a bit again and hope it continues. But it'll probably never catch up with the UC board now - despite my best efforts :p
Posted 1/18/2013 10:28 PM (GMT 0)
I enjoy the off-topic posts.
After visiting this forum for more than a year, I feel like I know some of the contributors and appreciate information that gives more insight into their personalities.

It would be pretty boring if all of our discussions involved symptoms and the quality of BMs.

We are NOT our disease. :-)
Posted 1/18/2013 10:43 PM (GMT 0)
I agree; I like the OT posts. There's only so much groaning and moaning about you can do about Crohn's/UC, really, before it starts getting a bit depressing.

On an OT note, it's my birthday tomorrow. Go me :p
Posted 1/18/2013 10:43 PM (GMT 0)
That is one thing they taught me in counseling school don't say she is a diabetic. Say she is a person who has diabetes. Don't give your identity to the disease.
Posted 1/18/2013 10:45 PM (GMT 0)
Why on earth would a forum topic close on the 3rd page?! I vaguely recall a moment like this . . .
Posted 1/18/2013 11:57 PM (GMT 0)

NCOT said...
I do think the Crohn's board is picking up a bit again and hope it continues. But it'll probably never catch up with the UC board now - despite my best efforts :p

Hopefully they'll both die a swift death in the near future when we get a cure.

/wishful thinking

Anyway happy birthday!
Posted 1/19/2013 1:46 AM (GMT 0)
Stereo, I don't know how mods do it on their forums, but if a thread reaches 3 pages or longer here on the Uc forum, we lock the thread and continue with part I, II, II etc. It makes it easier to navigate. UNLESS it's extremely controversial, than we let it "die" and don't continue it. It doesn't please everyone but oh well, no one is truly satisfied no matter what you do.

Happy birthday Ncot! My birthday was on the 16th :) But I'm celebrating it tomorrow with some close friends. Capricorn?
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