Meet & talk to fellow OstoMates Support | Friendship | Relationships

In person meet ups?

Thu Jun 20, 2019 11:59 am
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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. :) 

These are the top 5 issues ostomates face:

1. Dating and relationships
2. Concealing the pouch
3. Foods to eat and avoid
4. Losing or gaining weight
5. Pouch ballooning

Check out this video from MeetAnOstoMate.
Thu Jun 20, 2019 12:15 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.

Thu Jun 20, 2019 12:57 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. 

Thu Jun 20, 2019 4:05 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 other..........show 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. 

thanks,

bob

Thu Jun 20, 2019 4:50 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 :) hope that helps a bit. Also, I'm open to ANY ideas from ANYONE! I surely don't have all the answers :) 

Past Member
Thu Jun 20, 2019 8:26 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 Past Member on Sat Jun 22, 2019 4:16 am; edited 1 time in total
Fri Jun 21, 2019 6:59 am

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

 

Speak soon. 

Fri Jun 21, 2019 8:15 am

Rissy,

  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!

regards,

bob

Fri Jun 21, 2019 9:14 am

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

Fri Jun 21, 2019 6:53 pm

I've been looking for local ostomy hiking groups for ten years.  The meetup.com 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..

Sat Jun 22, 2019 7:52 am

I really like that idea!! 

Sat Jun 22, 2019 12:03 pm

Great looking forward to it.

Past Member
Mon Jun 24, 2019 4:37 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.

Wed Jun 26, 2019 2:06 pm
Hi Rissy,

I’m frequently in NYC, so if you ever want to get together for a casual meetup let me know.
Fri Jun 28, 2019 2:31 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...

Fri Jun 28, 2019 4:24 am

Marsha, Can you provide info on the regional conference in Maryland? Thank you. 

Tue Jul 02, 2019 10:51 am

Rissy, 

 

It occurred to me that setting up a meetup group is simple but it won't happen on its own. I just took the first step. Even though this page is for Maryland, feel free to join. I'll begin to post ideas to the group. I'd recommend setting a similar page for New Jersey. 

 

Regards,

Mark

 

PJT
Wed Jul 03, 2019 11:59 am

I'm in New York and, like Marsha, I used to attend Ostomy Group meetings in Manhattan. It seems like eons ago but it was nice to meet other ostomates in person and share thoughts, ideas and concerns. If anyone is traveling to the city I would be happy to meet up for coffee or a bite to eat.

Past Member
Tue Jul 16, 2019 4:40 am

10 years ago give or take there were yearly meetups from an European Crohn's and Colitus group foundation. We'd spend the weekend in some hotel and we'd have activities like sightseeing or discussing certain topics. Each year was good fun. It wasn't a big group, I guess 20 or so? But they were from all over Europe. So you'd get an impression how things are elsewhere. A shame they quit doing that. 

Here in the Netherlands they have a yearly ostomy meetup where they hire off a swimming pool so people with ostomies can swim without fear of being looked down upon. I have no interessest in attending that but ideas for what to do on such a meetup day are plenty. Just be creative.

Really depends on where people are coming from, if they're all from the same town you can do something simple like hanging out at a coffee place, get to know each other. But if they have to come from far, you're better off planning something bigger. People would like to stay somewhere for the night as fatigue is something you have to take into account.

Tue Jul 16, 2019 11:07 am
withed wrote:

10 years ago give or take there were yearly meetups from an European Crohn's and Colitus group foundation. We'd spend the weekend in some hotel and we'd have activities like sightseeing or discussing certain topics. Each year was good fun. It wasn't a big group, I guess 20 or so? But they were from all over Europe. So you'd get an impression how things are elsewhere. A shame they quit doing that. 

Here in the Netherlands they have a yearly ostomy meetup where they hire off a swimming pool so people with ostomies can swim without fear of being looked down upon. I have no interessest in attending that but ideas for what to do on such a meetup day are plenty. Just be creative.

Really depends on where people are coming from, if they're all from the same town you can do something simple like hanging out at a coffee place, get to know each other. But if they have to come from far, you're better off planning something bigger. People would like to stay somewhere for the night as fatigue is something you have to take into account.



Good info, withed! 

 

Past Member
Tue Jul 23, 2019 5:45 pm
Mark1070 wrote:

I've been looking for local ostomy hiking groups for ten years.  The meetup.com 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..


I haven't thought of a group hiking like this, it's a great idea.  I've hiked many trails in NY, alone and with other's,  but never with a fellow ostomates.  Truly,  would be a great way to spend a day, and not have the only topic be about your individual challenges as a ostomate, but enjoy the benefits of life and nature.

Count me in!

Michael 

Tue Jul 23, 2019 8:09 pm

I agree, Michael. It's always great to meet other ostomy-hikers! Please take a look at the local Maryland page and sign up: https://www.facebook.com/groups/353856981953889/   We're already affiliated with UOAA and plan to expand the group to other areas so feel free to set up a similar FB page in your area.  And if you're ever in the Maryland area, don't hesitate to let me know if you have time for a hike or backpacking trip.  I'll do the same if i'm up your way. Let's chat soon. Mark 

 

Thu Jul 25, 2019 9:13 pm

Hi there, great idea. I live in Monmouth county. What kind of group get together are you thinking about? People need to pick each others brains on this subject (iliostomy, care, crhons, etc)  and meeting socially, everyone being equal, no jugements, is a wonderful idea. LMK your thoughts.  Cheers!

Thu Jul 25, 2019 11:08 pm
warrior wrote:

Hi there, great idea. I live in Monmouth county. What kind of group get together are you thinking about? People need to pick each others brains on this subject (iliostomy, care, crhons, etc)  and meeting socially, everyone being equal, no jugements, is a wonderful idea. LMK your thoughts.  Cheers!


I couldn't agree more. We can exchange tips and other advice while doing activities we enjoy. I intend to help post-surgery ostomates get out of the house, out of depression, and to a point they can be confident doing the things they once enjoyed. The local meetups can be anything, from sports to grabbing coffee at a local shop. I'm a hiker so I simply invite group members to join me or ask if anyone has a good trail they'd be willing to show off. It's that simple. You're welcome to join and I'd encourage all to start similar page in their area. UOAA will be linking the pages on their affiliate support group list so that more people can find local groups or find a group in an area they're travelling. 

Tue Jul 30, 2019 1:22 pm

hmm. Been over a month since she posted anything. Hope she's okay. Anyone hear anything from rissey?

just an update.. Feb. 2020. NO word. I think she's MIA. 

PAS
Wed Jan 13, 2021 3:25 pm
RissyLauren wrote:

I really like that idea!! 

Well I know my respomse is late.  But I'm up here in Vermont and would love to join a hiking or kayaking or some kind of outdoor groups that know the challenges faced for us Ostomates!

SO if anyone is in VT, and wants to, let me know.

Cross country skiing is my next challenge to learn.

Pam

Thu Jan 14, 2021 7:55 am
PAS wrote:

Well I know my respomse is late.  But I'm up herYeah. I've be in Vermont and would love to join a hiking or kayaking or some kind of outdoor groups that know the challenges faced for us Ostomates!

SO if anyone is in VT, and wants to, let me know.

Cross country skiing is my next challenge to learn.

Pam


Yeah. For years, I've been waiting for someone to create an ostomymeetup.com website. I imagine it would be the ostomy version of meetup.com which offers all types of activities. 

 

Thu Jan 14, 2021 9:33 am
Mark1070 wrote:


Yeah. For years, I've been waiting for someone to create an ostomymeetup.com website. I imagine it would be the ostomy version of meetup.com which offers all types of activities. 

 

Hi Mark,

  It's a great idea just held back by the relatively small number of ostomates and the distances between us.  I mean this site is practically a graveyard in terms of activity and no one needs to do anything other than type.  So getting any number of us to actually drive somewhere, probably pretty far away, to get together would only work in areas that had a few ostomates in close proximity.  I think you'll find most ostomy support groups fail for this very reason, with the exception of those in larger metropolitan areas.  I know the one we had here only had 3 or 4 people show up once every other month........and that folded a few years back now.  It is nice to be around folks with like issues, it really does allow you to drop your guard and actually enjoy yourself.  But we need more ostomates to make it feasible, and I wouldn't wish that on anyone.  Maybe a yearly pilgrimage to my Sis's place up in Canada????

regards,

bob

Past Member
Thu Jan 14, 2021 4:46 pm
Mark1070 wrote:


Yeah. For years, I've been waiting for someone to create an ostomymeetup.com website. I imagine it would be the ostomy version of meetup.com which offers all types of activities. 

 


  Hi Mark,

I like the idea and agree it would be fun to meet up with others. But like Bob said it's far n few.

On the other hand I am open to anyone sending messages or the chat room is nice sometimes too. When you acquainted with someone, hit it off, if you want talk on the phone. It's a thought. 

The other option is to start a meetup group for ostomates and I'll bet there are plenty of us out there. It's a good idea even if we can't meet someone from this website, but if there were ostomy meetups more people may be introduced to this website that have never known about it. 

If anybody likes the idea maybe it's worth talking about it. Are there any POSITIVE thoughts out there? Obviously people interested should chime in. There are many not interested and that's fine but let's consider it.  Best wishes, ..mountain. 

Fri Jan 15, 2021 7:15 pm
Mtnman wrote:


  Hi Mark,

I like the idea and agree it would be fun to meet up with others. But like Bob said it's far n few.

On the other hand I am open to anyone sending messages or the chat room is nice sometimes too. When you acquainted with someone, hit it off, if you want talk on the phone. It's a thought. 

The other option is to start a meetup group for ostomates and I'll bet there are plenty of us out there. It's a good idea even if we can't meet someone from this website, but if there were ostomy meetups more people may be introduced to this website that have never known about it. 

If anybody likes the idea maybe it's worth talking about it. Are there any POSITIVE thoughts out there? Obviously people interested should chime in. There are many not interested and that's fine but let's consider it.  Best wishes, ..mountain. 



Yeah, Mtnman.  Everyone I've discussed a ostomymeetup.com loves the idea, including the marketing team at UOAA. I just need funding to get the website up and running.

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