Hi All,
I’d like to see who is interested in a meet up? I think it would be cool to meet at a bar or something and chat with like minded people who’ve been through IBD/pouch surgery.
You can come alone or bring your significant others.
Anyone interested?
Replies sorted oldest to newest
Nick,
Although I live in CT, I am travelling to Bradenton to visit my parents who live there March 14-20, so if this materializes during that time frame, let me know as I would like to come. My parents are soon to move into an assisted living facility and I visit them as much as I can.
Yeah! I'll meet up with you. I will see if I can get a group, but I don't know anyone on here so we will see.
Nick,
I know the Bradenton/Sarasota area well, as my family has owned property down there since the mid 1970s and I have been travelling there every year since the mid 1970s. At one time my parents owned a condo on Longboat Key, now they live in Bradenton.
There is a microbrewery in Bradenton called Motorworks which is pretty good. I am open to any other suggestions on the venue. If others will participate we can meet at some place more central. I will be staying on the water in Bradenton on Perico Island (it's the last piece of land before you get to Anna Maria Key).
I am scheduled to fly from Hartford to Tampa tomorrow morning, although we are right now in the midst of another Nor'easter which fortunately is scheduled to blow out tonight. I am schedule to attend Yankees games in Tampa Thursday and Sunday afternoons with my Dad. The rest of my schedule is pretty open. Friday night would probably work well. Thanks and hope we can get a few others to join.
Bad news. Southwest Airlines cancelled my flight and all flights to Tampa through Friday are sold out. So I was forced to cancel the trip, and I am eating the cost of tickets to 2 Yankees games. Unfortunately I will not be coming to Florida- not this week anyway.
Gotta love living in CT. Florida would be a better place to be right now!
I am not happy about it because my flight was tomorrow morning out of Hartford and I feel like Southwest Airlines acted precipitously to cancel flights. Anyway I am going to reschedule my Florida trip in April and Nick, hope we can still meet up at that time.
I agree about the flight cancellation. We are in Middlebury and the snow has stopped. For some reason, the mention of snow brings on this sense of panic, sometimes warranted and other times not.
Yeah, this meet up can happen anytime. I want to get a bunch of people anyway if possible. I've never done anything like this, but it could be fun. I enjoy drinking and getting out so it couldn't be bad to do it with people who have traveled a similar road that maybe most people wouldn't understand.
Nick,
i just rebooked my trip to Florida, I will arrive Monday morning April 9, and depart Monday evening April 16. At the moment I have no concrete plans other than I will be staying with my parents in Bradenton. If you set something up that week I will attend. Just keep me posted as my schedule will likely fill in that week as the trip draws closer.
As far as meeting spots I can make some suggestions - I mentioned Motorworks which is a microbrewery with an outdoor terrace, but there is another place I like called Pier 22 on the Manatee River. The food there is very good. Can also meet in Sarasota if it’s easier for you. Let me know.
Hi Nick,
Maybe you have already seen this but there are a few groups on Facebook that are good and have a lot more members than this j-pouch group here is a link:
https://www.facebook.com/groups/1174208039278732/
They have a yearly walk and group get together here in Tampa.
Check it out they may have more resources as well.
Have a great weekend,
Nicholle
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.
I am in Bradenton on vacation now through April 16 if anyone wants to organize a meetup.
Last night I had dinner with my parents at the Beach House which is directly on the water in Holmes Beach:
https://www.beachhousedining.com
I ordered fish tacos with blackened mahi mahi, my father had a Grouper Sandwich and my mother got the crab cakes with fried green tomatoes. The food was good. This would be a good spot for a meeting in Bradenton.
Tonight I am hunting for a sports bar at which I can watch the Yankees-Red Sox baseball game. On Yelp I located an Irish pub in downtown Bradenton called O’Brick’s Pub:
The menu looks great. I will probably be there if they will have the game on if anyone wants to stop by for a drink.
Update: game is on ESPN so staying at the condo tonight but open to going out for a meetup any other night.
