HealingWell
Search Close Search
☰

trying my first CCFA meeting tonight

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/21/2008 9:40 PM (GMT 0)
initially I was reticent, as I worry that the only people who attend CCFA meetings are the people who are really struggling, and I thought attending one might scare me. but lately I have been really wishing i could speak to someone going through this. all of you, and this forum, are great, but still, seeing someone face to face would be nice also. anyone been to a CCFA meeting? was it encouraging, helpful, discouraging??? thanks.
Posted 1/21/2008 10:49 PM (GMT 0)
I've never been to a CCFA meeting, but I have met a couple ladies from HW as well as attend the CCFA Guts and Glory walk. When you first meet them, it's sort of awkward to share the intimate details of UC. I think it's different when you're talking online to faceless people as opposed to face to face contact. But, the more you talk about it the easier it gets. Unless you really don't care and don't feel awkward? I find that it's highly encouraging and helpful to talk to others that are going thru the same thing as you. Good luck at the meeting and let us know how it goes.
Posted 1/22/2008 12:30 AM (GMT 0)
It is great to talk to people (other UCers) face to face about UC. I hope the meeting goes well!
Posted 1/22/2008 1:07 AM (GMT 0)

I went to a CCFA event in Washington D.C. a few months ago.  It was a sponsored event (not a group meeting) but well worth the time as they offered an update on clinical trials and had a panel of GI specialists and surgeons who answered questions from the audience. 

There's a sense of comfort in seeing others face to face who may be in a similar situation to you and share similar concerns so hopefully the meeting will go well for you.

Posted 1/22/2008 6:11 AM (GMT 0)
I found no comfort in being solicited to death or by being told I was lucky I had UC and not CD. The need ended quite quickly.

Some people love being a part of the crowd and the cause...I for one do not.

Let us know how it goes...it's definitely worth checking out, for it's who's there that can make your experience positive or not.
I hope it goes well.

quincy
Posted 1/22/2008 6:45 AM (GMT 0)
UCinNC,

I totally believe that talking with another sufferer of this dd face to face can relieve a lot of pressure, when I met Loneylane last year, it was amazing just knowing we both understood what each other was going through without having to say anything about it.

I hope your meeting went well and that you met some nice people.

Take care.

Dave
Posted 1/22/2008 8:34 AM (GMT 0)
How did you like the meeting?
Posted 1/23/2008 3:51 AM (GMT 0)
The only reason I could think of to go to one of those (at the moment) is to meet women who I don't have to explain why I am the way I am to.  But then again, I think it's bad enough having to deal with 1 illness in a household vs 2.  I can't imagine...

Hope that doesn't sound stupid

Posted 1/23/2008 6:02 PM (GMT 0)
I went. There about 10 of us, 8 with CD and myself and one other with UC. The other UC-er had just had surgery with a surgeon I am actually meeting with soon, so we chatted a little, but not a lot. The CD-ers, on the whole, were all quite ill. I think all of them were on remi or humira and many of them had fistulizing disease that had lead to bowel perforations. So, on the whole, the meeting kind-of scared me, to be honest. Not so muuch because of the diseases but because of the way the people seemed impacted by the diseases. A lot of people seemed either angry or resigned to a difficult life, like they'd thrown in the towel. At one point, when a woman with CD told me a story aobut her bowel perferating (which was how she got diagnosed with CD!!!), I said "I am so sorry," and the moderator looked at me and said "see what you have to look forward to?!" I actually stared right back at him and said I disagreed, and basically didn't speak to him the rest of the night. I understood that they were struggling with a lot of issues that are difficult and depressing, I am not denying that. But I just felt like no one seemed to feel any sense of optomism, and that made me not want to return. so, as much as I am hoping to find someone with UC that I can talk to face to face, I don't think it will be among that group of people. I hope that doesn't sound awful of me to say...
Posted 1/23/2008 8:07 PM (GMT 0)
Are you in Raleigh or Chapel Hill? I can't remember.
Posted 1/23/2008 8:11 PM (GMT 0)
UCinNC...i'm somehow not surprised. Misery isn't necessarily good company.

We're still here, however.

q
Posted 1/23/2008 9:37 PM (GMT 0)
I live in chapel hill, work in durham.
Posted 1/23/2008 10:11 PM (GMT 0)
That doesn't sound awful for you to say at all. I know I wouldn't want to be around people that are all gloom and doom. I know support groups are to help these people get thru rough times in their lives but it's also nice to hear a good story every now and then.
Posted 1/24/2008 1:47 AM (GMT 0)
Maybe we should start a support group for people who are doing fairly ok
Posted 1/24/2008 2:08 AM (GMT 0)
UCinNC - That sounds like a pretty sucky experience. I definitely wouldn't be going back if I were you! That moderator shouldn't have said that to you either...that was pretty insensitive of him/her, even though he/she probably didn't mean it that way.
Posted 1/24/2008 2:47 AM (GMT 0)
That meeting explains why my 1st gastro, a generalist, never wanted me to get involved with CCFA! So I compromised by reading their reports, but otherwise interacting with basically healthy people. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 1/25/2008 1:53 AM (GMT 0)
Sorry to hear the meeting didn't go so well. I was hoping to hear the opposite and get out there and find one, too!
Posted 1/25/2008 4:30 PM (GMT 0)
Hi Kids,
Long time since I checked in. I had to read this though. I did go to my local CCFA for a while while I was suffering with the UC and then a few times after my colon, etc were removed. We had a good group of young and old and sick and well, and even had some guys. Our group was more into positive support and options. I feel bad that your leader said that to you. After I had the surgery I went back so they could see how well I was doing. They were happy for me, and others were having surgery soon. I don't like gatherings of folks either, even church is hard for me, but now I go once a month to an ostomy group. I just need that face to look at and know I am not alone. My husband goes too and the spouses give more support to each other. I do know that all groups aren't the same. Even if you could find one person in the group that you hit it off with, it would be worth a try.
Leslie in KC
✚ New Topic ✚ Reply