Stopping the Stigma of Ostomy Surgery

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To Dream a Dream
Posts: 1414
Joined: 2010-08-10 18:35:53

Stopping the Stigma of Ostomy Surgery

Post by To Dream a Dream »

I just happened upon an Oct. 20th article on the UOAA website under Latest by our President James Murray. It was written in response to some negative comments about ostomies. Not being familiar with either the celeb or the TV program mentioned, I won't go into detail, but here is a link for those interested: https://www.ostomy.org/ostomy-surgery-s ... e-stigmas/
In his article, Jimbob presents an insightful suggestion of how people with ostomies are categorized & stigmatized by not only the general public, but also medical professionals who are purported to be helping us. It's been my own experience that these individuals whether due to their ignorance, burnout, psychological anomalies or even their own substance abuse (It happens, folks. I worked closely with them in the field.) continue to take out their own frustrations on the patients. My personal findings are that they are morbidly afraid of waking up with 'a bag.' And given the current stats. They or someone they care about, just might.
So, what is the answer. My humble opinion is that we continue to support UOAA's dispersal of accurate positive information wherever & whenever possible. (I just gave a copy of the latest The Phoenix Magazine to my PCP's department.) And to recognize those medical professionals who do show sensitivity for the specialized needs & rights of those of us LIVING with ostomies.
Crohn's Dx '66 (perforated ileum)
Multiple Bowel Resections
Ileo '77 Revision '85
Celiac Dx
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Diane C
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Joined: 2005-10-02 08:30:29

Re: Stopping the Stigma of Ostomy Surgery

Post by Diane C »

Thanks for this info, To Dream.

I agree with you. And the stigma about ostomies and "bags" goes on just as it does about mental health illness and assorted other issues. I find it helpful to speak up when I can. We can enlighten people. I'm careful about what I say and to whom but most people in my orbit understand that an ostomy can help, not hinder, and it's past time to spread that news. I don't necessarily shy away from the problems I can have with leakage or other situations because it helps my family and friends to understand me better. That did NOT work well at work -- but it's over and history. Management where I was employed when I retired was not the most educated and didn't want to be!

I apologize (AGAIN) for being away from this valuable board for so long. I hope most people have been doing ok and will try to help more. I do want to write an article about the value of this discussion board for our support group's newsletter in N. Virginia.
Diane C
2000 MACE
2002 Colostomy
2018 Above + anus removed; Ileostomy
2020 Scar tissue removed
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To Dream a Dream
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Re: Stopping the Stigma of Ostomy Surgery

Post by To Dream a Dream »

Hello, Diane. So good to see you reaching out again via the board. Am sure you were missed. I think your idea of a writeup about the importance of our board is a fine way of moving the UOAA forward. Will send you a PM soon regarding a little project of mine finally completed.
Keep posting & keep dreaming!
Crohn's Dx '66 (perforated ileum)
Multiple Bowel Resections
Ileo '77 Revision '85
Celiac Dx
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Diane C
Posts: 1006
Joined: 2005-10-02 08:30:29

Re: Stopping the Stigma of Ostomy Surgery

Post by Diane C »

To Dream,

Thanks so much! Yes, time has been challenging for me to manage lately but I'll try harder to visit this useful site. Writing about the discussion board here for my N. Va support group is REALLY for the members here in the DC/MD/VA area. Many of the members in our support group are older and don't tend to use computers as much. And well, our longstanding newsletter editor, Barbara Hawes, whom many at National know, unexpectedly passed away recently. So some of us may cobble together a monthly newsletter or announcement monthly for a while. She already is greatly missed and was sort of my mentor. Had an ileostomy at age 17 due to Crohn's many years ago. The most optimistic person I think I've ever met!

Take good care. And Happy Halloween!
Diane C
2000 MACE
2002 Colostomy
2018 Above + anus removed; Ileostomy
2020 Scar tissue removed
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To Dream a Dream
Posts: 1414
Joined: 2010-08-10 18:35:53

Re: Stopping the Stigma of Ostomy Surgery

Post by To Dream a Dream »

Dear Diane: Am so very sorry to learn of the loss of your friend & mentor. Having such a special person in your life when you appreciated her support is a true blessing. May her memory live on in your own gift for connecting with others in need. Having found the old UOA back in the late seventies, please know I share your feelings for all those who have gone before us. Generous with their time, empathy & knowledge. Not to be forgotten. May they be graced with the peace they so readily shared.
Crohn's Dx '66 (perforated ileum)
Multiple Bowel Resections
Ileo '77 Revision '85
Celiac Dx
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lolapergola
Posts: 500
Joined: 2009-01-01 12:45:09

Re: Stopping the Stigma of Ostomy Surgery

Post by lolapergola »

Strange , I was just coming on here to add this link https://metro.co.uk/2022/10/28/matthew- ... -17655019/
I don't think Mr Perry has thought his comments through .It's very unusual for your face to be spattered with faeces , a lot of people DON'T commit suicide if they have had an ileostomy , and if the only reason he doesn't relapse is because he dreads having a stoma back ( which implies it is worse than death from overdosing ) then he needs to think about the negative effects such comments have on people whose lives have been or would
be improved by having one .
Maybe James Murray (Jimbob ?) should write to Mr Perry and raise awareness of the lives that are saved through having a stoma and the difficulties we face without stars slagging stomas off .
It amazes me that there is not one big star who has a permanent stoma who has spoken up .I know it's a private issue but until someone who is really admired comes forth and says it's ok living with a stoma , ostomates will always be underneath the radar .John Mahoney's colostomy (Martin out of Frasier ) only came to light in one of his final interviews yet he'd had it since the 1980's .What a great ambassador he would have made .
jstl
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Re: Stopping the Stigma of Ostomy Surgery

Post by jstl »

I think the problem starts in the medical community. Aside from each person having their own issues (fear of being sick or 'ending up' with an ostomy, finding the ostomy disgusting),aside from the need or desire to make crass jokes (I've heard worse from medical personnel-my colleagues who don't know I have an ostomy- than any other groups) there is just plain ignorance and lack of concern. Years ago, my then-PCP recommended a colonoscopy (granted it was a print out given to all patients "of a certain age"). I was recently sent home from my current PCP with a recommendation for a high fiber diet. I have an ileostomy.
I understand that education is needed. I just don't think it's my responsibility as a patient to take the initative in providing it (although, of course, I do). By the time someone becomes my doctor, I expect them to have the knowledge needed or to go about finding it. One day, I'm going to start a new thread : Silly things my doctor did/said......
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To Dream a Dream
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Re: Stopping the Stigma of Ostomy Surgery

Post by To Dream a Dream »

Right on! And the abuse (I find it a form of harassment) is often directed toward ostomy nurses as well. Sad for everyone affected. Especially the young. The case of the child in KY a few years ago continues to haunt me. Covid has seemed to have leveled the playing field a bit lately. As many have been made more aware of the imminent vulnerability of both themselves & loved ones. And the lingering effects of chronic illness.
On a lighter side, your proposed thread is an excellent idea. At least a step in the right direction toward confronting the problem. Go for it!
Crohn's Dx '66 (perforated ileum)
Multiple Bowel Resections
Ileo '77 Revision '85
Celiac Dx
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Jimbob
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Joined: 2007-06-18 17:40:16

Re: Stopping the Stigma of Ostomy Surgery

Post by Jimbob »

For Information.

The article that appeared over my name was a product of UOAA Staff, Particularly Mr. Ed Pfueller our very talented Communication Director With input from Advocacy and others. Communication with other appropriate entities has been made.

UOAA advocates for all ostomates and fighting the stigma has been a hallmark of our efforts throughout our existence as the users of this board recognize.

Your continued support is very much appreciated. Hopefully you all receive the UOAA Newsletters. If not please consider clicking o the link on the website homepage.

Jim Murray, alias "Jimbob"
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danilynn
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Re: Stopping the Stigma of Ostomy Surgery

Post by danilynn »

There's a young woman named Kya Jeub on social media who is very open about her ileostomy. She posts videos and answers questions and I think she just started a podcast. If you google her name you'll find her videos.
Danica

Crohn's since age 6
Ileostomy 1993
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