I'm 19 and am just under four months out from my surgery. I haven't been to a support group, but because of scheduling more than anything else – the only time the group meets is during one of my extracurricular activities. Moreover, I LOVE my ostomy and don't feel that I really need the 'support' – I'd rather have some way of helping out. I think it also stems from the fact that the CCFC is more of a volunteer based organization so I want to do that with ostomy organizations. If there were virtual ways (and trustworthy ways) to connect with other young ostomates via video chatting, etc. I think it would be more accessible to the very busy youth living their lives with ostomies!!!
You are doing a fantastic job Jess! It was indeed a pleasure to meet you tonight. Let me know how the responses are from your blog tonight, with why we can't get the younger folks out to the support groups so we can make some changes at our end to encourage more participation.
Cheers! Chris
Marc
Posted at 05:22h, 19 November
I am 35, had ostomy since I was 21, and I have never been to a support meeting. They always meet on Sunday afternoons, so it conflicts with other interests. I enjoy the newsletters they send out though.
Sandra
Posted at 10:30h, 19 November
I got mine when I was 33, I have never been to a support meeting. Seemed like most of the paper information that I got from the group was about living with cancer and more about cancer. As I didn't get my stoma because of cancer it just didn't seem like the right crowd, no matter their age.
You are so right about ostomy companies targeting older people – and there is also this misconception by comedians (or would be comedians) that only old and mentally infirm people have an ostomy! (The 'comedians' usually refer to 'colostomy', not realising there are different ostomies). I have found so many people using the 'colostomy joke' (in some form or other) in terms of ridicule – and on account of that, so few people actually admit to having an ostomy.
Like some of the contributors above, I have never found it necessary to attend a support group meeting, but realise some people may find them helpful. (I am now 65 and had my colostomy 23 years ago).
I think you are doing an amazing job in dispelling the myths. A few years ago I used it as the subject of a painting, by trying to do the same thing in raising awareness that yes, even young and beautiful people have ostomies. Just recently I have joined Twitter and found it quite sickening to see the number of derogatory and vitriolic tweets on the subject of colostomy. Even in the 21st century there seems to be so much stigma attached.
Best wishes Willo
kbel
Posted at 16:00h, 19 November
First of all, I think you're doing a great thing. Your bravery and open attitude is in inspiration for people of all age groups.
Second, I think you are right about the age perception gap. Somehow the image of an elderly person is prevalent when one thinks of an ostomate. I think that marketing is only part of the problem. The other part is that most people, I imagine most younger folks in particular, don't like to advertise their ostomy. I know I don't. By the way, I am 35, but look and act more like I'm 25. I have had my ostomy since I was 31, though I had a temporary ostomy at age 21 for only a few months. I wish to preserve the illusion of youthful health, and revealing to the world that I have an ostomy automatically turns a switch in perception.
I have never been to a support group because of this. I feel healthy, I look healthy, I look and feel young. Going to an ostomy support group would likely shatter that well-cultivated perception. Mostly, I choose to ignore it. Having my ostomy has changed my life, vastly for the best. It is GOOD that I can ignore it, not dwell on it. I dread the possibility one day of having it turn on me and cause me problems as my J-pouch did (which is the reason I had to get a permanent ostomy). I like being able to ignore it, but I also am aware that my ignoring it does nothing to help other ostomates or kill the perception of ostomates had by the world at large. I am a writer, and yet the last thing I ever write about is my illness, my ostomy. I have no desire to dwell on it right now. I am more interested in pursuing all of the things I struggled with when I was constantly in the bathroom. But it does feel good knowing that there are others like me out there; I can only imagine how much better it would feel if we all were as open as you.
Chris Rose
Posted at 03:49h, 23 November
It is yet another misconception that "support groups" are only for those needing support…it is also for people who feel healthy and happy and are doing well in their lives…who can share their experiences and knowledge with others who might need a boost.
The "Colostomy Story" comedy routine that Billy Connolly did a few years ago may hit a nerve with some, but try to remember that much comedy comes from life experiences that can otherwise be frustrating or even scary to go through…the comedy can help to alleviate some of those fears and frustrations and ease nerves. I don't believe the comic's intent was to insult anybody or any illness/condition.
You are so right about ostomy companies targeting older people – and there is also this misconception by comedians (or would be comedians) that only old and mentally infirm people have an ostomy! To my suprise, your article is good , and i would like to share the thing what i like with u at Yanagigawa Men's eyeglasses
Jessica L
Posted at 04:36h, 01 December
My name is Jessica, Im 19 and just had surgery about 4 months ago. I have not been to a support group yet. I think I would love to go to one! I have no issue with my ostomy, I havent felt this good in forever! I have a wonderful boyfriend of 2 years, who also has crohns. He is soo supportive of everything I do, and thinks Im just as beautiful with it and I'am w/o. If I heard more about groups,and when they meet, and if there were people my age then heck yes I would come.
I have buyed many products on line.Cool.I found some good sites,whose pruducts have gained popularity among socialites and celebrities.From these sites,several of my friends buyed products.The Website including
Jennie
Posted at 04:08h, 19 NovemberI'm 19 and am just under four months out from my surgery. I haven't been to a support group, but because of scheduling more than anything else – the only time the group meets is during one of my extracurricular activities. Moreover, I LOVE my ostomy and don't feel that I really need the 'support' – I'd rather have some way of helping out. I think it also stems from the fact that the CCFC is more of a volunteer based organization so I want to do that with ostomy organizations. If there were virtual ways (and trustworthy ways) to connect with other young ostomates via video chatting, etc. I think it would be more accessible to the very busy youth living their lives with ostomies!!!
Chris Rose
Posted at 04:12h, 19 NovemberYou are doing a fantastic job Jess! It was indeed a pleasure to meet you tonight. Let me know how the responses are from your blog tonight, with why we can't get the younger folks out to the support groups so we can make some changes at our end to encourage more participation.
Cheers!
Chris
Marc
Posted at 05:22h, 19 NovemberI am 35, had ostomy since I was 21, and I have never been to a support meeting. They always meet on Sunday afternoons, so it conflicts with other interests. I enjoy the newsletters they send out though.
Sandra
Posted at 10:30h, 19 NovemberI got mine when I was 33, I have never been to a support meeting. Seemed like most of the paper information that I got from the group was about living with cancer and more about cancer. As I didn't get my stoma because of cancer it just didn't seem like the right crowd, no matter their age.
Pat (Willo) Williams
Posted at 15:14h, 19 NovemberYou are so right about ostomy companies targeting older people – and there is also this misconception by comedians (or would be comedians) that only old and mentally infirm people have an ostomy! (The 'comedians' usually refer to 'colostomy', not realising there are different ostomies). I have found so many people using the 'colostomy joke' (in some form or other) in terms of ridicule – and on account of that, so few people actually admit to having an ostomy.
Like some of the contributors above, I have never found it necessary to attend a support group meeting, but realise some people may find them helpful. (I am now 65 and had my colostomy 23 years ago).
I think you are doing an amazing job in dispelling the myths. A few years ago I used it as the subject of a painting, by trying to do the same thing in raising awareness that yes, even young and beautiful people have ostomies. Just recently I have joined Twitter and found it quite sickening to see the number of derogatory and vitriolic tweets on the subject of colostomy. Even in the 21st century there seems to be so much stigma attached.
Best wishes
Willo
kbel
Posted at 16:00h, 19 NovemberFirst of all, I think you're doing a great thing. Your bravery and open attitude is in inspiration for people of all age groups.
Second, I think you are right about the age perception gap. Somehow the image of an elderly person is prevalent when one thinks of an ostomate. I think that marketing is only part of the problem. The other part is that most people, I imagine most younger folks in particular, don't like to advertise their ostomy. I know I don't. By the way, I am 35, but look and act more like I'm 25. I have had my ostomy since I was 31, though I had a temporary ostomy at age 21 for only a few months. I wish to preserve the illusion of youthful health, and revealing to the world that I have an ostomy automatically turns a switch in perception.
I have never been to a support group because of this. I feel healthy, I look healthy, I look and feel young. Going to an ostomy support group would likely shatter that well-cultivated perception. Mostly, I choose to ignore it. Having my ostomy has changed my life, vastly for the best. It is GOOD that I can ignore it, not dwell on it. I dread the possibility one day of having it turn on me and cause me problems as my J-pouch did (which is the reason I had to get a permanent ostomy). I like being able to ignore it, but I also am aware that my ignoring it does nothing to help other ostomates or kill the perception of ostomates had by the world at large. I am a writer, and yet the last thing I ever write about is my illness, my ostomy. I have no desire to dwell on it right now. I am more interested in pursuing all of the things I struggled with when I was constantly in the bathroom. But it does feel good knowing that there are others like me out there; I can only imagine how much better it would feel if we all were as open as you.
Chris Rose
Posted at 03:49h, 23 NovemberIt is yet another misconception that "support groups" are only for those needing support…it is also for people who feel healthy and happy and are doing well in their lives…who can share their experiences and knowledge with others who might need a boost.
The "Colostomy Story" comedy routine that Billy Connolly did a few years ago may hit a nerve with some, but try to remember that much comedy comes from life experiences that can otherwise be frustrating or even scary to go through…the comedy can help to alleviate some of those fears and frustrations and ease nerves. I don't believe the comic's intent was to insult anybody or any illness/condition.
tony
Posted at 03:55h, 24 NovemberYou are so right about ostomy companies targeting older people – and there is also this misconception by comedians (or would be comedians) that only old and mentally infirm people have an ostomy! To my suprise, your article is good , and i would like to share the thing what i like with u at Yanagigawa Men's eyeglasses
Jessica L
Posted at 04:36h, 01 DecemberMy name is Jessica, Im 19 and just had surgery about 4 months ago. I have not been to a support group yet. I think I would love to go to one! I have no issue with my ostomy, I havent felt this good in forever! I have a wonderful boyfriend of 2 years, who also has crohns. He is soo supportive of everything I do, and thinks Im just as beautiful with it and I'am w/o. If I heard more about groups,and when they meet, and if there were people my age then heck yes I would come.
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