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SqueakyandLiza
(@squeakyandliza)
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January 9, 2020 5:17 pm  

I visited my local support group for the first time today.  It was an interesting experience.  Everyone was very nice.  There were, I think, 9 ostomates there, a variety of types.  A couple urostomy, and a mix of ileostomy and colostomy for the rest.  The used to meet quarterly, but have go to every other month recently.

One of the ostomy nurses runs it--she is very knowledgeable and very kind.  The local hospital provides lunch - you just go the the little deli section and get what you want.  They had some pre-made sandwiches and salads.  They will give lunch to the ostomate and their support person if you bring someone with you.  My hubby was too busy with work to go with me.

The speaker had cancelled, so there was a rep from Byram who was there to answer questions and he passed around a number of products they have.  And it was a lot of just open discussion about various issues people have.

All in all, it was a good experience.  I would go back.  Though not sure how feasible it will be once I go back to work, since it was the middle of the day.  I'm pretty sure most of the members are retired.  LOL  

There was another lady who was there for the first time, who was visibly upset and said she is really struggling.  One of the other ladies mentioned that she is part of an online support group.  She is not one of the cool kids (VO members).  But said how much her online group has helped her, so when it was my turn to introduce myself, I gave a VO shout out, and said how much you all have helped me.  :)


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VeganOstomy
(@veganostomy)
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January 10, 2020 9:27 am  

Thanks for sharing that, Liza! And thanks for the shout-out :) 

What was the age distribution like? I find that most members at our local group here are well over the age of 50, and urostomates are hard to come by - you're lucky to have them in your group! 

Middle of the day is hard, but it's better than nothing for those who have no other support. 


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sjlovestosing
(@sjlovestosing)
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January 10, 2020 9:28 am  

Hi Liza,

I wish we had an  support group near where I live - the nearest is an hour and a half away.  However, I am certainly glad for the support, advice, info and friends that I have found here! Thanks again, Eric for creating this site!!!

Stella


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john68
(@john68)
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January 10, 2020 1:26 pm  

Maybe I am wrong! But I have always felt younger ostomates are  under represented, yes I know they would be welcome at these groups but are put of when they don’t see their own age group 


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Tony
 Tony
(@ileostony)
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January 10, 2020 1:29 pm  

@john68

If you're wrong, then so am I, though, as Liza has illustrated by her experience, a big factor in this could be the meeting times when many younger folks have vocational commitments.

 

Back to my vocational commitment.


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dogtalkerer
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January 10, 2020 2:58 pm  

young people at a physical location, at a meeting. you guys are showing your age.  they have smart phones they rarely meet face to face.   look on the UOAA web site, very little action happens in the young adult section, who here is under 30?

look on facebook or youtube, thats where they hide.


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SqueakyandLiza
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January 10, 2020 3:04 pm  
Posted by: @john68

Maybe I am wrong! But I have always felt younger ostomates are  under represented, yes I know they would be welcome at these groups but are put of when they don’t see their own age group 

That is very true, John. Everyone was very nice, but I was really hoping to meet some people closer to my age. 


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SqueakyandLiza
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January 10, 2020 3:41 pm  

I have a sort of funny story about yesterday. I mentioned there was a Byram rep there. He was from another city, about 2 1/2 hours to the north of where I live. One of the things he brought was copies of a newsletter they do up there for the local support groups. He said we could sign up to get them by email and pointed out the email address to send a message to in order to sign up. 

Last night I was looking through the newsletter and was surprised to see my picture on page 3. There was an article about a couple who had gone to Boise for the ostomy walk in October. Before the run/walk started, they had asked all the ostomates to take a group picture. That picture was in this newsletter with the article. 😂


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LK
 LK
(@dlkfiretruck)
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January 10, 2020 8:17 pm  

Liza, what a hoot!!!  In all reality what are the chances of that happening!!! You take a trip like that, and on  your second walk, choose to go to a meeting and find yourself there in a whole other way!  I think that is pretty awesome all around! Did you say anything to anyone or maybe to the group? I suppose congratulations are in order here!  Congratulations Liza! I'm glad you enjoyed the meeting and then that newsletter and thank you for sharing your experience with us. I enjoyed reading about it! 


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SqueakyandLiza
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January 10, 2020 8:23 pm  
Posted by: @dlkfiretruck

Did you say anything to anyone or maybe to the group? 

Linda- if I had noticed it while I was still at the meeting, I definitely would have said something. I will mention it to the ostomy nurse at my follow up appt with her on Tuesday. 


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VeganOstomy
(@veganostomy)
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January 13, 2020 10:09 am  
Posted by: @dogtalkerer

young people at a physical location, at a meeting. you guys are showing your age.  they have smart phones they rarely meet face to face.   look on the UOAA web site, very little action happens in the young adult section, who here is under 30?

look on facebook or youtube, thats where they hide.

This is actually a fascinating topic that interests me quite a bit.

I have the benefit of seeing analytics data for all the social media accounts I'm on + YouTube.

If you look at YouTube, nearly all ostomates who run a channel are young (under the age of 40 for sure), but my viewership is made up of a majority of people over the age of 50, with the largest demographic being 65+. 

My Facebook users are nearly all under the age of 44 (65+ being the second demographic behind 18-24). 

I'd love to find out what factors influence someone's attendance and participation in live meetings/events. 

I wonder if there's a chicken or egg situation here: Are younger people not attending in-person meetings because they don't feel represented? Are older folks not making videos because they feel that the younger generation has "cornered the market"? 

For me, because I used to regularly attend both Ostomy and IBD group meets, I found that there weren't enough young people to relate to in the ostomy camp, and time didn't allow me to go to the IBD meetups, even though it was mostly people my age or younger. 


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john68
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January 13, 2020 10:28 am  

Hi Folks, For me attending meetings didn’t or don’t work for a few reasons. I was 25 when I had my ostomy and yes the age of the other members put me off. Secondly there seemed to always be an air of negativity about them which is ironic! Plus the time they where at never suited. I am now 51 and not a social media person but I love browsing the net to read up on something I may buy or to find out info for work. I found Eric by accident and liked what I saw. Plus I can drop in at any time and only takes a click! 


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LLNorth
(@llholiday)
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January 13, 2020 1:28 pm  

Not really wanting to make the commitment to attending a support group (one of our local hospitals has one - it seems to meet sporadically and sometimes not for months) -  I do wish I knew someone with an ostomy I could have coffee or lunch with once in awhile. I do this with two or three other women I know who, like me, have had cancer; however, theirs has been breast cancer, not colorectal, and they are not ostomates - it is always so nice to see them.


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