Starting an Ostomy Support Group in Eastern Michigan

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Have you ever been in a public place (the grocery store, for example) and wondered how many others have ostomies? Are they like yours? Do they feel or use the same products as you do? etc. etc. Well, I guess I am so curious that I would like to start a support group, just a place where a few can meet and have coffee and a donut. I'm a very positive person and honest as the day I was born (honest). Happily married, etc. etc. I live on the very eastern side of the state on the Canadian border (Port Huron, Michigan / Sarnia, Ontario, Canada). I have been an ostomate for 10 years and have been checking around for a support group as far away as Saginaw, Bay City, Flint, Metro Detroit, Ann Arbor (that's the last place I saw my colon or sat on a toilet LOL).




I am very hopeful someone will answer this post (not today maybe, but any day).

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Hi. I am from Michigan as well, the Detroit area. I have had my colostomy for 3 weeks now. I also looked for a support group when I knew that I would be undergoing surgery. I had no luck finding anything except a U.C./Krohn's group that met at night (impossible for me at the time in the shape I was in) and in a distant suburb of the city. I eventually saw a therapist for several months to help me face the operation. He suggested I look in the Ann Arbor area. Once again, he missed the point that travel was out of the question at the time. Now, I am recovering from surgery, so I don't think I could travel to a group meeting until I am healed. I would, however, be interested. At various points in my life, I have had problems, and I have always sought a support group to help. I really think they can be enormously helpful. Since I couldn't find anything, I have used the online community and its resources. I haven't committed to joining as, like you, I am married and wasn't interested in meeting anyone romantically and wasn't sure if that wasn't what joining meant. Anyhow, keep me informed.

I'm in Detroit. I'm the only person I know with a colostomy. I've never been a support group kind of girl, but I'd be interested in exploring... check out the vibe, the people, and see what we'd talk about.

Cee, I know you aren't feeling like traveling anywhere right now. It took me a while, especially since I had to go straight to chemo a few weeks after surgery. I had my surgery 1/08 and finished chemo 8/08, so I'm good with getting around.

I'm not a full member so I can receive messages, but can't respond to messages sent to my inbox.

Let's see what happens...

Sadiqah

Cee, I read your profile and we have some issues in common.  I'd be interested in talking to you, however since we both don't have full memberships I don't know how to connect.  I'm going to send you my contact info to your inbox and see if you can get it or they block it.  

Contact me if you're interested in communicating.



Peace & Love,

Sadiqah

Cee,

I was wrong. You can't send a message if you aren't a full member. I tried to send the message, but it wouldn't allow me to unless I joined. I'm not working right now, so that isn't in my budget. I'm not sure how to connect now. Any suggestions?

Here's an idea. My name is Sadiqah Keys, and you could contact me to be my 'friend' on the most popular social community...hint, hint
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. I can't write the name of it, or they'll block my message.

Michiganman, I think I have the same dilemma with you.

I hope to connect with you two soon.

Sadiqah

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Mild_mannered_super_hero...you are a HERO! Thanks...

You're very welcome.
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Hi keysgirl,
     No luck with the message as you guessed.  I haven't done social community networking (lame me) but no doubt my kids can help.  I am actually feeling better than I have in a long time.  And traveling... taking my son to college on Sunday.  I was told by a number of gastroenterologists that after I had the colostomy, I would wonder why I waited so long to have it.  I struggled for 8 years and, in truth, my quality of life is already better.  I can eat dinner and watch a movie at home without leaping to the bathroom every ten minutes.  Don't get me wrong, I don't love the bag and I am terrified at the thought of the visiting nurse ending her visits.  I think I will get 2 more and I am still trying out different pouch systems.  Weird.  Like picking out a hairdo or something, except not attractive.  Anyhow, we will connect somehow.
Cee

Cee...check your mail inbox.

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  Hi

michiganman



Wishing you good luck with starting a support group. I am in the process of doing this also.

Hi Cee,

Glad to hear you are feeling better. I know what you mean about the visiting nurse. I felt the same way. When I was recovering from surgery, and after being sick for so long, she was my social life.

mildmanneredsuperhero sent me a message saying he was going to send you my link so that we can connect through there to start.

I hope you continue to improve.

Hi keysgirl,

     Actually, I couldn't open the message from him, so I ended up joining. It got frustrating not being able to open messages that people sent. I didn't pursue the social networking community yet as I am not a member there. I will look though. I guess the support group is not happening yet. Too bad.

     Thank you for understanding about the loss of my nurse. She was so helpful with problem-solving, and even though she felt I would do fine (and insurance wasn't going to pay for any more visits), I am less confident than she. When I read other people's stories and they are discharged from the hospital with nothing but a brochure and a 'good luck,' I can't believe it. I have had and do have issues that she was very instrumental in solving and resolving. She had been doing this for 30 years!