Ostomy Support Group

Kelly

We went to our first meeting in Sept primarily to hopefully meet the WOCN and get info on how to reach her in the event my husband might need to see a nurse....he had his surgery at Mayo Clinic in Jacksonville which is 2 1/2 - 3 hrs away and need a more local contact.

Going to this meeting was only for this purpose as we both feel we have accepted this and are dealing with it just fine and luckily having no problems certainly makes it easier also.

HOWEVER I will say that it was very good that we went as I feel we can help others who truly need it and we will continue to go when we can. We did not go in Oct as the meeting was the very next day after we came home from a very long tiring day of travel.

You might think you will feel a bit uneasy but when you are in a room like this where you have so much in common with others but I think it is the opposite. People in general want to help others and those who have knowledge or any kind of info that might be of help to others it really is a satisfying experience I think.

Not much different than this forum but of course you are seeing people face to face.

We are not experts by any means but I found at that one meeting alone that so many know so little and any info was greatly appreciated. Our general age group is 55+ due to where I live in a retirement community so maybe by our age we are less inhibited....lol.

At least give it a try and see how you make out. Hopefully it will be beneficial.

that's great! I would love to go to one, but there are none near me, there is nothing near me, lol.
It will be good for you to see other people and be able to talk to other people who understand

We aren't quite that far out, but a real grocery store is at least 15 miles, and the mall is about 20 miles and we don't even have a fast food place! I don't live in town, but the town does have 4 stoplights! So that's big time! I looked just now to see if maybe someone had started one closer and the closest one is about 2 hours away, and all thepeople in the picture were 150! :D

Well Summer and Dan, the average age at the group was 67......I was definitely the youngest by a good 20 years at 39. They had an ET nurse come and discuss hernias which was somewhat interesting, lots of questions. I wasn't really made to feel like part of the group and the one lady that did talk to me kept on pitying me for being so young with an ileostomy. I just about walked out after listening to her go on about how unfair it was for me to have this, and how she felt so sorry for me, and was I able to have it reversed so I could "HAVE MY LIFE BACK". I mean, really????? Not really what I wanted to hear.

I doubt that I will go back....the topic for January is "seniors living alone in our city and how they can access services". Probably very appropriate for the group, just not for me....

Sigh....and I was so hopeful.....

     Oh, sorry Kelly that the meeting was a downer.  I am 66 and have a permanent ileo.  I was 63 at the time of my operation and was soooo sick that my surgeon told me I was not a candidate for j-pouch.  It really didn't matter to me whether I had the permanent ileo or j-pouch because if the disease didn't kill me I sure would have died from the meds, especially prednisone.

     I never felt it necessary to go to a support group meeting.  I find wonderful support right here in this forum.  I think you will too.  Summerstorm is a young person with an ileo and I think Shaz, one of our moderators, was very young when she received her permanent ileo.

    By the way, how did your GI doctor perforate your colon?  Was it during a colonoscopy?  I remember my GI doctor aborting sigs and colonoscopies on me because of my diseased rectum.  He was always afraid of perforation.

They're considering a J-pouch even though you have Crohn's??? Everything I've heard and read has told me that pouches just don't work for Crohn's because the pouch can still get diseased and inflamed... undiagnosed Crohn's is the #1 reason for J-pouch failure. So as far as I know Crohnnies who get colectomies always end up with permanent ileostomies. Even UC patients going in for J-pouch construction have to jump through hoops to rule out Crohn's first, or they won't do the J-pouch. But maybe I misunderstood you?

I had the same experience at the support group meeting here. I am TRYING to reach out to see if there are more people my age. I live in a military town and many of our returning wounded warriors have ILEOs - so I am hoping that my WOCN can help me facilitate bringing some people together.

I just called yesterday to confirm there will be another meeting Saturday after Thanksgiving. Since we are in an over 55 community the people are older but "younger older" if you know what I mean...a lot of baby boomers here.


Sorry the meeting didn't have someone your own age as that would have been good for you.

Hubby did not feel the need either due to the wonderful resource this forum and another one is for us. But I did need to make a contact with a closer WOCN which we did at the first meeting in Sept.

The only problem is the guy heading the group thought he had someone to take over for him....I KNOW HE IS HINTING at me to do it.....right now I explained I would rather be in a support type role and come to the meetings and try to have something each meeting to hand out and or a topic to discuss as the group is not as organized as it should be. I am not at the point of taking on something else...maybe down the road. But I can see where there is a definite need for this to continue here as I got the definite impression so many needing more info.

I know....the more you read the more confusing it gets. I have decided to let it be until my appt in February. Nothing I can do right now anyways!!! If I learned anything during my surgery and hospitalization, it was to be patient and let things unfold as they will. For a high strung type A personality, it's a daily struggle to live with that mindset!!!

I am a little ways away in Ottawa, Ontario. It about 4 hours from St. Catharines. Not sure if she gets up this way but I will email you my contact info! Even just to chat would be nice!

I had my first meeting at the first of this month had to drive a hour to get there. They welcomed my Husband and I with open arms. Their were 4 new ileo including me that showed up too. A great mix of
all ostomy folks. Had a nutrinists and 2 wc nurses there, a great time meeting everyone, and even were great with my Husband and welcomed him to join in. I'm thankful I have a new and personal support group. Next meeting is first of Dec and Christmas party mixed with food and present swap. I wish this for everyone, go and mingle we are all brothers and sisters in this as it affects all ages we are all in the same boat.

A support group if available is certainly good and has its place but depending on who is in that group you may not get the assistance you might be seeking. 

To have interaction and form a relationship of sorts certainly is nice if it happens.... but I find it invaluable having this forum and another one I frequent.  I say this as it is a 24/7 resource....if there is a question or problem you don't have to wait and "HOPE" at the next support meeting you can get the answer to a question/problem you may have.  It's amazing and terrific that we have these resources on the internet at our disposal nowadays to help us out.  It certainly saves a lot of anxiety too.

The support group in our area we will attend as much as possible as I feel we can be of assistance in some way or another as it seems the knowledge base for many is limited at best.

I typed up easy instructions as a hand-out directing people to this forum and another one so they will hopefully be able to adjust much easier than some are doing at the moment.  I think this will be such a "lift" for some who need more help.