This is not a very good forum..

[bobj]

Does anyone know of any similar forums for IBD that have more interactive users?

 

[Pangolin]

Reddit has a crohn's board, but people there are much less knowledgeable overall

 

[bobj]

Reddit has a crohn's board, but people there are much less knowledgeable overall

But this is basically a dead forum. I'm looking at people who've generated threads a month ago and are only receiving responses now. Interactivity on this forum occurs at almost a slower pace than dial up internet.

Is Reddit the only one you know of? They also have a Discord community, which is kind of neat.

 

[lost]

I'm 1 of the lurkers that read a lot, but only comment if I have real info to post and I'm sure there are others like that.

 

[Lisa]

There are many who 'lurk' and chime in now again. There are also many threads that are quite active while others not so much. This site is not intended to be a 'chatty' forum - rather a support group and hub of information that people share. A lot of times, information can be gained from just reading what has previously been posted, and if you don't see a lot of responses to a post it may be that the conversation has been taken privately, or the OP has received the information they are looking for.

 

[westernbuddy]

I did see a thread where the original owner came back and tried to make it busy again, it has not worked out however.

You would think with millions of crohns patients world wide there would be some very busy discussions on the Internet.

There used to be but not at the moment.

 

[lukesjr]

I think people come here when they feel bad and when they are in remission they leave and stop thinking about it. There is something to be said for that, in that stress is a major trigger for crohns. So, obsessing over crohns probably will make it worse. This forum is not super active, but it is more active then any other forum out there by leaps and bounds.

 

[Jo-mom]

It's the best forum out there for parents with kids with crohn's. I have found this more helpful than anything else out there and I was doing a lot of searching. This, by far, was the most informative for me.

 

[Pinecone7288]

You

I think people come here when they feel bad and when they are in remission they leave and stop thinking about it. There is something to be said for that, in that stress is a major trigger for crohns. So, obsessing over crohns probably will make it worse. This forum is not super active, but it is more active then any other forum out there by leaps and bounds.

You're totally right, when I am not in pain (which is not often) or thinking about a procedure (like this Friday), this Fourm is only moderately on my mind.

 

[Tony H]

Theres a very active forum called

https://www.veganostomy.ca/community/
very active with a really proactive owner called Eric , very friendly bunch there (like here) but you will get answers very quickly .

 

[asadmom]

There are also many private convos going on that are super candid and free flow. Feel free to reach out to the experts (and there are a lot) via dm.

 

[paddywack]

I tend to post more when things flare up.
It seems there's a solid core of people who have known each other for years, and many people are kind enough to offer suggestions when asked.

I don't really comment on things I know nothing about, or on long-standing threads among friends. Feels like crashing someone else's party. To me, anyway. I'm not upset about it, I just don't want to stomp my clumsy self through good friends chatting.

Also, I work full time. Spouse, teenagers still at home, dog, cat, insurance denial to appeal, so on and so forth.

I don't have the time to be very active online. Unless I'm sick in bed.
And my crohn's has been relatively mild so far, so I don't have experience with some of the subjects discussed.

 

[D Bergy]

I was an active poster when I was having problems and was looking for actionable information to help myself with the disease. Information without a method of using it is a waste of time for me. I did get a lot of good information here in the past that I was able to apply to my treatments.
I resolved my Crohn's and I do not know much about the pharmaceuticals that are the main focus now so I don't visit often.

However, anyone interested in alternative treatments can PM me if they have a question or information on the subject. My focus now is trying to normalize my immune system. Far more difficult to measure therefore to treat also. I know a lot about treating Lyme and co-infections also. I actually spend quite a lot of time helping people with that problem since my wife had that in the past. People PM me when they have questions on methods of treatments for Lyme because I am not active on those forums either for the similar reasons.

I am sure the Covid 19 fiasco also took away from the forum. I know I spent a great deal of time trying to get to the bottom of that.

Sorry to hear the forum is so slow. Didn't know that until now.

Dan

 

[Guerrero]

I think this is the best forum with the best users.

i agree with other comments, when you feel good you forget to participate much.

Hope you’ll find the support or help you need here or somewhere else.