Looking for In-Person Meetups - Let's Connect!

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Pinkpanther

I am in the Pittsburgh, PA area!

warrior

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.

Gray Logo for MeetAnOstoMate
w30bob

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)

warrior
Reply to w30bob

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.

w30bob
Reply to warrior

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)

https://pubmed.ncbi.nlm.nih.gov/29977417/

 
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
warrior

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.

w30bob

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)

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