Support Groups in your area

I go to a group that I really like. I think part of what makes it work is that it's at a hospital and there are two social workers and an ostomy nurse who facilitate the group. They are generally light handed with the facilitation, but can step in and keep things moving (and they are aware of comments that people might take the wrong way).

Our group is really diverse in terms of age, reason for surgery, race, gender, time since surgery etc. There are usually new people every month, and people come in and out of it. A lot of the meeting is focused on helping the new people (including people considering surgery).


We mostly go around and introduce, talk a little about our situation, check in about how we're doing. That typically takes the whole meeting.... there's a lot of back and forth. The main issues we've had are with people who also have mental health issues and go into long monologues or say things that make other really uncomfortable.... but that's not too often, and again, good to have the social workers there.

We do have a lot of people who are very positive in outlook.... I wonder if we have more people w/IBD, since we have more younger people.... a lot of us are happier about surgery than people w/cancer and other things. There are a lot of folks who come to the group really upset, then get a bit more positive every time, and then after a while are just so grateful to the group.... then when a new person comes, they can say, "A year (or two or some other number) ago, I felt just like you do," etc.

Your group sounds like it's serving more purposes than a support group with parties and product reps etc. Maybe that's not the kind of group you're looking for? Are there others you can try?

I did try one at another hospital (my own actually), and it wasn't as good.... I think because the facilitators were all nurses and aren't as good at it...

But I think you should consider speaking up when someone makes a comment like the one you were describing. Maybe others don't like the negative tone too....

Hope something in here is helpful.

Don't be nervous! Seeing other people in person who all have ostomies and knowing that they are out there living their lives successfully is empowering. I remember my first meeting, just 3 weeks out of surgery, and just how in awe I was that all of these people were functioning just fine...there are people in my group who have had ostomies since the 60s!

We have a great group here at healing well but seeing people in person is a whole different experience.

Our meetings are one and a half hours, once a month. Some people complain that the group doesn't meet often enough!

It's great that you are approaching things constructively. Maybe you could do a survey to see what people want?

If the group has been meeting for a long time w/some of the same folks, then it's probably also serving a social function for a lot of people. I guess mine is a bit like that for me, in that it's just nice to be in a place where I can talk about my life without having to worry about freaking other people out with the intensity of things...

Laras mom, I agree 100% w/Stephanie, in that it's great to see other people w/ostomies in person ... the people in my group could be people I passed on the street anywhere.... I knew that intellectually, but it's a whole different thing to see it.

I also met one woman who has had an ostomy since the year I was born (and I'm 50). Amazing!

Did you try to contact the crohns and colitis foundation? Maybe they have a group, but one that has people with ostomies in it.

Or you could tell the president that you would like to try a project or game at the next one. Maybe you could do a fun game that gets everyone involved and says what they are thankful for.

It's kind of funny you brought up this topic. I was just thinking of this.
I was always afraid to go to any kind of support group because I figured I didn't need to and that it was going to be really depressing. I went to one in my town and walked by the room for a minute and they were already in progress and I didn't want to interrupt. From what I could see they were a LOT older than me and they were talking about breathing techniques. I quickly decided it wasn't for me. I reached out to an online group who referred me to another group about 30 minutes away. I tried that out and I actually had fun. It is a pretty diverse group ranging from 17 to two 20 year olds, 30's 40's etc... Everyone is actually pretty positive and we have some good laughs, even the older people have a really good sense of humor. I was actually introduced to a girl at the last meeting who is my age and we exchanged phone numbers and have been hanging out. It's pretty cool to have a friend that understands.
Every month the president puts out a newsletter. Here is a quote from it and I am pretty sure he was talking about us.
"I noticed something at our product fair that I must share. I must say for those of you
under the age of 40 reading this thinking that they are too young for this group, there was
a gathering of young than 40 something’s who are actively recruiting other’s their age to
come on out and meet fellow ostomates. It’s really cool to see a new dynamic to our group
developing right before our eyes."

Also, we talk a lot about what we CAN do with our ostomy. One lady shared hundreds of pictures of her trip to japan and showed us how they have toilets specifically for people with ostomys. Another person talked about how good of a time they had at camp for people with ostomys.
As far as games go, we had "Ostomy Jeapordy" one day. Basically it was set up on a screen just like jeapordy. There were different categories like "hollister products" or "ostomy group history" etc.. It was actually a lot of fun.
We also have people bring in items to raffle off. All the ticket sales go towards paying for a kid to go to camp so that's pretty cool.

If anyone is in the chicagoland area and would like to join the group let me know.

Call your surgeon's office and see if they know about local meetings. All the ones I have been to have both surgeons and or social workers in attendance.

Sue

Oh yeah there is also a Benefit called "Burgers to Benefit Butts" at Red Robin in Bloomingdale, IL on November 10th from 11am-11pm. Part of the proceeds go to help provide awareness for ibd and ostomies.
You must print and present the flyer.
Hopefully you guys can see this. Copy and paste it.
http://www.facebook.com/events/381858338555426/

The group here is mostly elderly people - I WANT it to be successful but it needs a mix of people from different age groups. I think the WOCNs in the area have to be promoting it also. Maybe I need to volunteer as a publicity person...just what I need to do is take on one more responsibility LOL!

I'm out in farm country and there isn't a group within 20 miles of me.  I found a supply company in a nearby community that has "ostomy clinic days" when I went there to get more adhesive wipes because my regular mail order supplier won't send me enough. 

They charge $25 for patients who do not order through them.  Company also will make available a private consultation with an ostomy nurse.  I don't know if there's a charge for that.

I don't know if my insurance covers this company.  At least it's another avenue to follow when support groups are not convenient.