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In person meet ups?

Posted by RissyLauren, on Thu Jun 20, 2019 12:59 pm

Hi everyone,

I am new to this site so I apologize if this topic has been brought up already. I know we are all scattered but would anyone be interested in helping me coordinate some in person meet ups? As a patient advocate for the IBD and ostomy community, I know first-hand how helpful (and awesome!) it is to connect with others who understand what we go through.

If you're comfortable, share where you are located and maybe the approximate amount of time/miles you'd be willing to travel? 


I'm in South Jersey and Id definitely be willing to drive an hour- hour and a half. Smile 

Reply by Donleo, on Thu Jun 20, 2019 1:15 pm

I'm in Middletown NY if you would like to meet. There is a nice mall very close where we can meet. I think it is travel distance for you. Let me know.

Reply by RissyLauren, on Thu Jun 20, 2019 1:57 pm

I actually had a doctor who worked in Middleton, NY. It's about 45mins or so from my parents, who live in Westchester County, so next time I'm planning a visit I'll definitely let you know. 

Reply by w30bob, on Thu Jun 20, 2019 5:05 pm

Hi Rissy,

   I'm relatively new on here, so excuse my ignorance......but what exactly is an "in person meet up"?  I get that it's physically meeting someplace, but then what?  I'm not trying to be a smart-ass, but what would we do once all us bowel-challenged folks got done introducing ourselves to each each other our stomas or tell stories about our most embarrassing leak? I'm being sarcastic, so don't get mad. But I attended an ostomy support group (just) once and it turned out to be a bunch of old ladies sitting in a circle gossiping about where they recently travelled, each trying to out do the other....for over an hour or so.  Not exactly how I'd like to spend a summer Saturday afternoon, if you know what I mean.  So help me out here and please explain what these things are all about.  What would we do in person that we wouldn't be doing on here? Maybe there are other newbies who'd like to know as well. 



Reply by RissyLauren, on Thu Jun 20, 2019 5:50 pm

Hi Bob,


Definitely not mad at your question. As you said, I'm sure a lot of others aren't sure what I meant either. I've also personally been to ostomy support groups and haven't found them comforting or like them at all in fact. 

In my mind, we would all get together some place and DO SOMETHING FUN! From there, I assume we would chat, share some of our stories and just get to know each other. Definitely wasn't thinking about a sitting around b*tch fest if that's what you meant Smile hope that helps a bit. Also, I'm open to ANY ideas from ANYONE! I surely don't have all the answers Smile 

Reply by JMC, on Thu Jun 20, 2019 9:26 pm

It's a nice idea and good luck if a meet-up happens, in years gone by on this site I have read posts from people trying to make a "get-together" happen but don't believe it has ever eventuated (but if anyone knows different please feel free to correct me).

On the other hand, I know from personal experience, one-on-one meet-ups, hook-ups, flings, affairs, friendships, relationships, marriages definitely can and do happen so maybe start off small with just meeting one person and see if it grows from there.

Last edited by JMC on Sat Jun 22, 2019 5:16 am; edited 1 time in total
Reply by RissyLauren, on Fri Jun 21, 2019 7:59 am

Haha thanks for your input. Understood. Was just a thought anyway Smile 


Speak soon. 

Reply by w30bob, on Fri Jun 21, 2019 9:15 am


  Don't take my and Jo's comments as a put-down or suggestion to not go ahead and set up some Meet N Greets........we're just a bunch of older sarcastic types, so pay us no mind.  It's great to see someone like yourself try to get folks together, I was just wondering what it would entail.  I'm sure the majority of people on here would love to get together if it was possible, just watch out for the horny old guys (wink, wink) that prey on you younger ostomates.  You go girl!



Reply by RissyLauren, on Fri Jun 21, 2019 10:14 am

Haha Bob, I didn't take them as negative. You both were bring real...which I appreciate:) 

Reply by Mark1070, on Fri Jun 21, 2019 7:53 pm

I've been looking for local ostomy hiking groups for ten years.  The hiking groups don't work for me because their snack and bathroom break schedules are very different than mine, as any ostomate would understand. I've spoken with other ostomates who've expressed a need for outdoor ostomy groups for various other activities. e.g.- running, biking, climbing, etc..

Reply by RissyLauren, on Sat Jun 22, 2019 8:52 am

I really like that idea!! 

Reply by Donleo, on Sat Jun 22, 2019 1:03 pm

Great looking forward to it.

Reply by Mtnman, on Mon Jun 24, 2019 5:37 pm

Hi Rissy, I think that's an excellent idea. Maybe people in other states would like the idea as well. It's a new lifestyle for all of us and those who would be interested in getting together for some outting all share a commonality. Friendship's can be made doing an activity together, and getting together out and about is a great thought Rissy. I'm in Oregon.

Reply by vanessa1970, on Wed Jun 26, 2019 3:06 pm
Hi Rissy,

I’m frequently in NYC, so if you ever want to get together for a casual meetup let me know.
Reply by Immarsh, on Fri Jun 28, 2019 3:31 am

Hi Rissy Lauren, and " all".     My name is Marsha, and I live in central NJ ( FReehold Area).   I 've had my ileostomy for more than 50 years,   and back in the day my parents ( I was 15)   dragged me off to NYC Osttomy meetings.     I met a lot of wonderful people, and even enough young adults for us to start our own young adult group.   That laster for quite a few years, until most of us grew up, moved and scattered.   But the experiences we shared were invaluable.    WE told our own stories,   shared & researched questions,  volunteered to try new products ( very few back in the old days)  and supported each other as well as the United Ostomy Association.   Today there are many more groups around the country, offerieng all kinds of help and programing....    And yes....some   newbies do show each other their stomas.    In  day past,  t here were no ostomy therapists, so those with ostomies volunteered to visit new patients for support and instruction.    We'd also have  guesst speakers on the newest procedures, diet, medical findings, .    I hadn't been active in an ostomy support group for more than 25 years,   but finally went to the regional conference in Maryland..    I met some of our group memebers,  and  enjoyed the surgical supply display & advice of various stoma therapist.    If you've never been,   I highly suggest attending one.....or a few,   just for the experience.    ANd if anywone would like to do a meet and greet day here in NJ.....let me know...    It's always nice to meet new people and share experiences...

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