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
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.
Why Join MeetAnOstoMate?
First off, this is a pretty cool site with 33,450 members. Get inside and you will see.
It's not all about ostomy. Everything is being discussed.
Many come here for advice or to give advice 🗣, others have found good friends 🤗, and there are also those who have found love 💓. Most of all, people are honest and truly care.
Privacy is very important - the website has many features that are only visible to members.
Create an account and you will be amazed.
10 years ago, give or take, there were yearly meetups from a European Crohn's and Colitis 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 of how things are elsewhere. A shame they quit doing that.
Here in the Netherlands, they have a yearly ostomy meetup where they hire out a swimming pool so people with ostomies can swim without fear of being looked down upon. I have no interest in attending that, but ideas for what to do on such a meetup day are plenty. Just be creative.
It 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 to 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.
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 others, but never with a fellow ostomates. Truly, it would be a great way to spend a day, and not have the only topic be about your individual challenges as an ostomate, but enjoy the benefits of life and nature.
Count me in!
Michael
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
Hi there, great idea. I live in Monmouth County. What kind of group get-together are you thinking about? People need to pick each other's brains on this subject (ileostomy, care, Crohn's, etc.) and meeting socially, everyone being equal, no judgments, 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 a 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 traveling.
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.
Well, I know my response 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
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
Hi Mark,
I like the idea and agree it would be fun to meet up with others. But like Bob said, it's far and few.
On the other hand, I am open to anyone sending messages or the chat room is nice sometimes too. When you get acquainted with someone, hit it off, if you want to 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.
Hi. I'm in NJ. Recently, I reversed and found that I am still in need of this community. It's such a particular experience. I'd be down to meet up.
4-2023 update.
RisseyLauren of NJ started this thread in 2019.
Pinkpanther just replied today.
(3.31.23) and some of the responders from 2019 are likely gonna get a message or alert as I did, thinking this is a new post...
It's not new.
I was quite surprised to see this thread reborn. The young lady Rissey, her name rang a bell.
Rissey had a good idea back then, and you may see my comment back then where she simply vanished in 2019. Wow.
Where is she? What happened to her? Is her idea not worth taking up again? The thread appears to have fizzled out.
I say let's continue. All in favor? Say "hit baggers".
Actually, I have been considering
"a meet n greet" sometime now...
I think Jerseyans should have a small get-together first to see how comfortable we are. Then anything is possible depending on the drive and location.
I'm giving a shout out to the following people I have read about from NJ...and yes, I made a list.
Eam...forever mountains...njbain...angelicamarie...I'mMarsha...crymollic (and any other newbies from NJ)
Four or five people would work. An icebreaker, of course...
Let's get some brain activity, input and output, pros and cons going.
What needs to be addressed:
1) - Your location and amount of time you can drive.
2) - Would you consider picking up an osty who can't drive?
3) - What would sincerely motivate you to want this to happen?
4) - Unlike some osties who post and disappear, I'd say an emergency backup contact would be ideal. A name, number, email of someone we could contact.
Only one person from our group would have info if willing to accept that job.
5) - Where would you recommend a meet?
Any fears against having this small group form should be mentioned.
We are at ground zero.
Warrior here. Talk to me.
Hi bro,
The idea was popular for a time back when Rissey suggested it, but faded quickly once everyone realized the distances involved. What everyone should do is join "the other" ostomate site and register their location on their ostomate map. Then we could see where everyone is really located in relation to one another and see if it makes any sense to have regional meet-ups. Saying you're having a meet-up in Jersey doesn't mean much unless you say where the meeting would occur, as folks from New York, Pennsylvania, and Delaware might be closer to that location than Jerseyians in different parts of the state. The other thing about having folks go register on the other site's map is you'd know if they're currently out there or not. On here you can search by state, but have no idea if those folks are active or bailed a long time ago. You could try to use the responses to this post to see where everyone is located, but many don't read (or reply) to every post, so some might not see this. I like the idea of getting together and seeing everyone's poop bag (although I'm sure they're all pretty much the same), but it'll take a Herculean effort doing it this way. Unless you're buying everyone a sub and bottle of ORS for showing up...
;O)
Hey Bob... How's it hanging? And good to hear from you!!
Yeah, I get your point about people being spread out all over New Jersey or people in the near neighboring states would be closer. Or some people pop in once in a blue moon... But I'm centrally located... For example, Marsha is close to me and well, NJ bain I think he's up in Westwood. That's a drive, so I'm just trying to get an idea of how many people would like a quick meeting, a quick get-together to discuss some options, and then we can go from there... But your idea about the other ostomy site to register is good... So it would be smart... Get registered, see who's in the area... So maybe I'll do that next...
I do have a little experience with running a network for people with hearing loss, and ideally, you know when I came to this site, I was looking for people who had hearing loss and inflammatory bowel disease, and so far I've only found that one woman. I think she's out in Ohio... Marco, I believe her handle is, but she doesn't have IBD.
Also... Whenever there is a reply to a thread, doesn't everyone in that thread get a notification?...
They should. And they should also reply when time permits.
Hey Hoss,
I hear you, but don't hold your breath. There's lots of reasons folks don't reply on here, let's just hope it's one of the lesser ones. I'm guessing you've read this one, but there's a list of 'similar articles' at the end that might have something you haven't seen. If not, I'm just wasting your time. Oops!
;O)
No waste. It was incredible to read the articles. Thank you, bro.
No, I haven't done much reading or research on Cogan's and IBD in a long time.
Basically, they are saying hearing can be affected by IBD.
Just not enough cases was the excuse 20 years ago.
Even some articles here are outdated and no transcripts available.
I think people with IBD should have eye and hearing checks regularly.
These articles are a good case for it.
Yeah, it is fascinating how much of the body can be affected by IBD... and more fascinating that our medical 'professionals' know so little about it all. As a youngster, I used to hold 'doctors' in very high esteem, thinking they were the smartest people on the planet and able to 'cure' almost anything. Little did I know they're really clueless on most things (when you really dig down into specific problems) and are mostly just shills for Big Pharma... who are the ones who do the real research and decide which ailments they want to address... based mostly on profit potential. Makes me glad I didn't pursue a career in the medical community, as it sounded like a real challenge growing up... and I loved challenges. I'd be very upset being part of all that now.
You're right about the eye and ear checks... especially hearing. Most never even consider their hearing until it's too late... or very obvious. Like I said... IBD can touch almost every part of the body... and yet is mostly not understood. Woes us!
;O)