trying my first CCFA meeting tonight

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UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/21/2008 4:40 PM (GMT -6)   
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.
29/Female/NC
Pancolitis dx 3/07
9 Colazal a day (used to be on 12 Asacol, don't think Asacol helped)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/21/2008 5:49 PM (GMT -6)   
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.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


dakotagirl
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Date Joined Apr 2006
Total Posts : 3402
   Posted 1/21/2008 7:30 PM (GMT -6)   
It is great to talk to people (other UCers) face to face about UC. I hope the meeting goes well!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


Rio in Maryland
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Date Joined Nov 2007
Total Posts : 891
   Posted 1/21/2008 8:07 PM (GMT -6)   

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.


Rio, 31 yr old male - diagnosed with UC in 07/2006.
 
Alternative therapies for several months (SCD, ayurvedic treatment, VSL#3): didn't work and became anaemic. Canasa, 2 daily: remission for a month then flared-up.
07/07-11/07: 4800mg Asacol (6 x 400mg, twice a day) & Aloe Elite.
Completed first (6 week) tapered course of Pred in 10/07, flaring up since coming off it.
11/07: Switched from Asacol to 12 x 750mg Colazal (3 weeks on it and symptoms got worse)
12/07: Asacol 4800 mg, Started Azathioprene 175mg, Prednisone 60mg - taper.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30829
   Posted 1/22/2008 1:11 AM (GMT -6)   
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
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Dansky
Veteran Member


Date Joined Mar 2005
Total Posts : 2844
   Posted 1/22/2008 1:45 AM (GMT -6)   
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
Dansky Co-moderator UC forum
 TAKE FLYING LESSONS ON A MOUNTAIN BIKE TODAY!
Azathioprine, Beloc-Zok, Calcichew, Citalopram Hydrobromide, Dihydrocodeine, Mydocalm, Paracetamol, Pariet, Prednisolone, Sulfasalazine, Zopiclone.
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marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 1/22/2008 3:34 AM (GMT -6)   
How did you like the meeting?
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/propranalol



        http://www.myspace.com/martybuzz1<FONT]


doors12
Veteran Member


Date Joined Jul 2006
Total Posts : 716
   Posted 1/22/2008 10:51 PM (GMT -6)   
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
Diagnosed with Ulcerative Colitis 6/2006 at age 26 after sudden E.R. visit
~Pancolitis (Mild to Moderate)
 ~I had Mono in 2000
On Colazal 3x3/day; Folic Acid 1mg; Calcium/Magnesium/Zinc combo
In remission about 2-3 months after E.R. but not back to normal!
 
~Interested in finding a cure/making sense out of U.C. and philosophical and psychological aspects of UC and "Stress" and Personal Development issues with Chronic Illnesses. 


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/23/2008 1:02 PM (GMT -6)   
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...
29/Female/NC
Pancolitis dx 3/07
9 Colazal a day (used to be on 12 Asacol, don't think Asacol helped)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 1/23/2008 3:07 PM (GMT -6)   
Are you in Raleigh or Chapel Hill? I can't remember.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


quincy
Elite Member


Date Joined May 2003
Total Posts : 30829
   Posted 1/23/2008 3:11 PM (GMT -6)   
UCinNC...i'm somehow not surprised. Misery isn't necessarily good company.

We're still here, however.

q
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/23/2008 4:37 PM (GMT -6)   
I live in chapel hill, work in durham.
29/Female/NC
Pancolitis dx 3/07
9 Colazal a day (used to be on 12 Asacol, don't think Asacol helped)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/23/2008 5:11 PM (GMT -6)   
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.


 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 

Post Edited (Red_34) : 1/24/2008 7:56:28 PM (GMT-7)


doors12
Veteran Member


Date Joined Jul 2006
Total Posts : 716
   Posted 1/23/2008 8:47 PM (GMT -6)   
Maybe we should start a support group for people who are doing fairly ok
Diagnosed with Ulcerative Colitis 6/2006 at age 26 after sudden E.R. visit
~Pancolitis (Mild to Moderate)
 ~I had Mono in 2000
On Colazal 3x3/day; Folic Acid 1mg; Calcium/Magnesium/Zinc combo
In remission about 2-3 months after E.R. but not back to normal!
 
~Interested in finding a cure/making sense out of U.C. and philosophical and psychological aspects of UC and "Stress" and Personal Development issues with Chronic Illnesses. 


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4509
   Posted 1/23/2008 9:08 PM (GMT -6)   
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.
24 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D); fish oil


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5187
   Posted 1/23/2008 9:47 PM (GMT -6)   
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.])

AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 1/24/2008 8:53 PM (GMT -6)   
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!
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and DONE as of 11/26/07!Canasa suppositories 1000mg 2X/day as of 1/22/08
 


Hopeso
Regular Member


Date Joined Jun 2004
Total Posts : 231
   Posted 1/25/2008 11:30 AM (GMT -6)   
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
Les and DB from KC(Les is a member of UC and Ostomy forum also)
DB diagnosed 11-01-07
psa high for several years from 4 to 10, but last one before surgery was 8.6
Gleason 3+3
T1c
Da Vinci on 12-14-07

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