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my experience attending a support group  


Joined: 2 years ago
Posts: 42
July 28, 2019 4:50 pm  

Hi all,


A few months ago I found out that there's an ostomy support group in my area that's easy to get to, but since their website hasn't been updated in quite a while, I figured the group wasn't active anymore. A couple weeks ago I found out that it is still going, and it happened to be on the night they met, so I decided to go.


My intent was to try and network to find someone who could show some things to me. That didn't happen the way I would have liked, but I still got something out of it. It gave me flashbacks to being back in a college class. lol


The subject of the meeting was a presentation by a rep from some kind of supply company. It actually took me about 15 minutes to realize that he was presenting info and not just another ostomate attending. I got the idea that the company is some kind of distributer, rather than a manufacturer like Hollister, coloplast or ConvaTec. Someone said another company that does the same thing as this guy's is Edge Park, which, going by another forum I've looked at, some people don't think too highly of. Oh well... happens with everything. lol


Anyway, they just went through this big catalog of supplies, which I had no idea what most of them are. However, it was interesting when the guy asked me for my input, like if I ever had problems flying or swimming when I had my ostomy.


There was only one other lady who came though. I didn't really get to talk to her, but it was interesting to finally meet someone else who has an ostomy in person.


The most helpful thing for me was talking to the lady who runs the group, as she is an ostomy nurse at the hospital where the group meets. Actually, she was just filling in for the regular nurse who runs it, but still... I would've loved to talk to either of them more. Someone like that is exactly who I wish I'd known about when I had my ostomy. I got to talk to her a little bit after the meeting when she took me to the bus stop. She seemed curious about me, and she didn't come off as annoying like some people do who ask me what it is like being blind. Even though she is a professional who would understand, I still found it difficult to tell her my story, which I didn't expect.


All in all, the meeting left me wanting more. Perhaps that wasn't the best place to get what I was looking for. Ideally, I would try to connect with that ostomy nurse 1 on 1 and maybe she could show me some of the equipment they were talking about, since that would help me in putting together some info to help other blind people dealing with this stuff. I'm not sure if she can do that though since I'm not one of their patients.  I would even be willing to talk to their staff and tell them about my experience and how they can better help a person like me.


I'm glad I went though, and would go again.

LK and VeganOstomy liked
Joined: 6 years ago
Posts: 2906
July 29, 2019 12:40 pm  

Thanks for sharing your experience. I should mention that you may find it different going another time or when they have a big event (like when they have all the manufacturer reps in there to show product). Sometimes, especially during the summer, it's like an off-season for groups, so your feeling of wanting more might have just been because of the time of year. Connect with the person who runs the group and see if they have any events or "manufacturer days" coming up and try it again. 

You may also want to see if the major city in your area has a group - the city groups tend to be much larger than small-town groups. 

If you do it again, please let us know how it went! 

LK liked
Joined: 3 years ago
Posts: 799
August 2, 2019 2:19 am  

Thankyou for sharing your insight on the meeting. I know my circumstances were different at the time of my ostomy, but even then I had never considered online info let alone a group meeting. I think patient or not they would be happy to share information with you simply based on the fact that your trying to gain independence with an ostomy for the blind. Unique and neccesary are to words that come to mind here. Keep up the good work!🦉Wisdom ends when one no longer seeks knowledge.

zhtfreak liked