I belonged to a similar monthly CCFA support group in CT for around 5 years. Very few of the members of those groups have J Pouches and most do not even know what it is. They are mostly Crohn’s and UC patients. The usual topics at those meetings are diet, coping with the pressures of the disease including impacts on family/coworkers, coping with job related stress brought on by the disease, and recommendations on treatments/doctors. Usually there is a moderator of the group and he or she will solicit topics for discussion from attendees and they are usually what is noted above.
I found that most of the people in these groups have much more serious issues resulting from their IBD and felt as though I didn’t have sufficient “status” or standing requiring support. It is a support group more than anything else and while it functions as an exchange of information between those with IBD, the primary function is to provide emotional support to those who need it. A lot of the members we had were not getting what they needed in support from spouses/parents/other family/boss/coworkers so it was helpful to talk to others with the diseases and get support.
I always felt my IBD suffering, although at 45 years quite long, was nevertheless on the low end of severity for that group so there was some shame in me not having more suffering to talk about. People hearing that I worked full time as an attorney for 25 years wanted to know the how and why of that, but once they heard I never missed time from work or had to file for Social Security Disability, they kind of lost interest in my minimal issues. I was a kind of outlier even though I am diagnosed with Crohn’s because my disease is mostly under control with Remicade/antibiotics/diet.
There is also an aggressive fundraising component to these groups as they prod you to attend walkathons, bowlathons and other CCFA fundraising events. Back in the 1990s I organized 2 bowlathons that raised $5000 or so in Connecticut. The walkathons are probably more fun in Florida than they are here. It is the sunshine state after all.