Have you attended an IBD support group?

[littlered7593]

There is one in the city next to where I live and wondered if people actually go to them. Honestly I think it sounds like a great idea but I have anxiety and would like some insight.

 

[gracem]

If you consider CCFA meeting support group, then yes. It wasn't really my thing I thought it would help knowing that there were others out there like me but it didn't. The group that I met with seemed so intent on furthering the cause by fund raising and raising awareness about the disease that they managed to take the human aspect out of it. Something that should have warm ad friendly was cold and almost mechanical.

Don't let my bad experience discourage you though. I think the group that I went to was just poorly managed. It will probably be different if you go to an actual support group.

 

[Layla]

I used to go years ago and found it really helpful. It made me feel less "alone" with the disease and it was really useful to hear about different meds and dr's etc. This was pre internet so it was much more difficult to get up to date info on anything.

Unlike Gracem's experience my group was really warm and friendly and gave everyone a chance to talk and ask questions about basically anything. If there was one around here I'd certainly go again.

 

[Julia12345]

Hi, i haven't attended any and unfortunate i do nog know of any myself, only thought to share my thoughts so you know your not alone with your question.. the first time i start opening up towards others is via this forum, which already makes such difference in my life. If there would be any around here were i live i properly would give it a try.

 

[Bunty]

I would dearly like to find a self help/support group locally but have had no luck so far. Most groups seem to be just like gracem has experienced, more about raising money and awareness than offering relaxed chit chat about IBD. The patient panel I belong to at the hospital have made it abundantly clear than there is to be NO personal interaction, which I understand on one level, but feel it is an opportunity lost on another level, for people going through similar issues to just talk about it.
It's when I'm feeling at my lowest that I need others to talk to about how I'm feeling, and to be able to ask questions as to how everyone in this situation deals with these feelings. I may be able to help others or they may be able to help me, but unless there's an opportunity to discuss it we'll never know. If I was feeling stronger both mentally and physically then I would consider starting up a group...
Bunty x

 

[Tubes]

Since my early teens I've tried these groups many times and I know people that love them and think there the greatest but I've yet to have a decent experience at one.I've been to a few in my teens that was all kids my own age that didn't want to talk and as I've gotten older I've been the youngest person by 30 and sometimes 40 years where it's a mixture people that don't want to talk or are just plain angry.I always go into these things with an open mind but I always left feeling I wasted my time asking questions and either getting no response or a nasty one.

 

[Pug Gamer]

I have never been told about any but when searching online for my hospital number (GIs) I came across a support group for IBD. I thought it was bad ive not been told. But when I looked it put me off as by the look I would be a good 30+years younger than everyone. And they look very clicky. It didnt seem glad to welcome newbies but more proud of there dinners out together etc.

 

[thike1966]

Yes, and I am lucky to have one not too far away, but the they only meet on the 2nd Tuesday every other month. Doctor Nichols leads it and he is very inspirational telling us there is going to be a tectonic shift in Crohn's Care like we have not seen since the introduction of Remicade 20 years ago.