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30 Year Old wishes to die rather than a permanent stoma

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(@chrisandbagpus)
Joined: 6 years ago
Posts: 254
Topic starter  

Hi a thoughtful piece here very sad to read it.

It shows the reality of how desperate without the right support we can be. The young man is currently sedated

Judge rules that man in his 30s should be allowed to DIE because he does not want to live with a stoma bag

  • Seriously ill patient who has long-term bowel problems made clear his wishes 
  • Following surgery, specialists put chances of survival between 60 and 70%
  • The man had lived with a temporary stoma before and 'hated it,' his parents said
  • Man said: 'How can I get a job? How can I get a woman?' according to mother

 The full article here:-

https://www.dailymail.co.uk/news/article-8387647/Judge-rules-man-allowed-die-does-not-want-live-stoma.html

 


Colostomy Jan 2020


   
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(@squeakyandliza)
Joined: 7 years ago
Posts: 1066
 

This is so sad. I know I was very despondent about the thought of a permanent stoma too, but not to the point of wanting to die. And more importantly, that feeling went away. 

It seem unreasonable that his parents support his wish to die rather than live with a stoma and it also seems unreasonable that the court would rule to let him die. Especially since he is currently unconscious. He should be required to have some sort of professional counseling and talk to a support group before such a decision is made. I know for me, this website and the people here made a big difference to me. 

Thanks for sharing this, Chris. 


-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


   
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(@john68)
In Memorandum
Joined: 9 years ago
Posts: 2059
 

A very sad and alarming article, It shows the overwhelming fear and stigma of an ostomy. As much as is being done to address and promote life with a stoma it still too much for someone to take in the positive side. I feel for him and his family, would be education be the answer! I don’t know maybe! To many people leave the hospital and the medic s see their job as done! But healing starts in the mind as much as in the body. Chris it’s a strong and thought provoking topic and one that needs to be debated. Goes to prove how important the role of an advocate is. How many have had a life change because of VO! Plus we all have and can play a role by simply replying to a post sharing ideas and giving support. I have had my ostomy half my life! And I have benefitted massively from the forum. It’s a road trip and best with company 🙏


ileostomy 31st August 1994 for Crohns


   
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(@chrisandbagpus)
Joined: 6 years ago
Posts: 254
Topic starter  

Just to give a little more detail

The article says he is sedated and a judge for the court of protection made a ruling on his "Advanced decision" This is a document that indicate an individual wish should they lack the capacity. As the court usually act in private the exact detail are unlikely to be available, I guess he is in a coma (maybe induced as the result of a  complication)

The medics said "They said a decision needed to be made because it would be some time before the man regained the capacity to make a decision for himself"

I wonder if he had better counseling and help  long before this surgery if he might have made a different Advanced decision.

John is right saying

"It shows the overwhelming fear and stigma of an ostomy"

We are so lucky I think to have found our way to this forum


Colostomy Jan 2020


   
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Dona
 Dona
(@dona)
Joined: 9 years ago
Posts: 832
 

This is indeed a very sad story. I too am so grateful for having had great doctors, stoma nurses and this fine group of people at VO.

I benefit so much from the advise and support of others.

Together we are so much stronger.


Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 12 years ago
Posts: 4721
 

I generally support right-to-die laws for terminal patients, but I can't help but feel like we are either not getting the full story or there has been an alarming lack of support given to this person. 

When I read that his concerns were "How can I get a job? How can I get a woman?", this tells me that he is either not aware of the millions living with an ostomy without these being a problem, or that there has to be more to it than what we know. 

It would be tragic for someone to lose their life because they felt as if they would never be able to work again. Heck, before my surgery I didn't know if having an ostomy bag meant that I would be locked in my home, unable to even go for walks!

I'm going to try to see if/how I can reach out to the family to make contact with this man. 


Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@squeakyandliza)
Joined: 7 years ago
Posts: 1066
 
Posted by: @veganostomy

I'm going to try to see if/how I can reach out to the family to make contact with this man. 

You are such a good person, Eric, and a wonderful example to us all!!


-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


   
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sjlovestosing
(@sjlovestosing)
In Memorandum
Joined: 8 years ago
Posts: 651
 

How my heart breaks for that young man and how misinformed he has been. Yes, when I found out that I would have a permanent colostomy, I was in shock for about a day or so, but then I went forward to find out all I could about having this change in my life and I discovered VO! What a God send that was and still is to me. Thank you one and all, especially Eric, for all the encouragement, info, and camaraderie I have received here. You have all been a blessing and help in my life. That young man will certainly be in my prayers!

God Bless,

Stella



   
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VeganOstomy
(@veganostomy)
Admin
Joined: 12 years ago
Posts: 4721
 
Posted by: @squeakyandliza
Posted by: @veganostomy

I'm going to try to see if/how I can reach out to the family to make contact with this man. 

You are such a good person, Eric, and a wonderful example to us all!!

I've contacted the writer of that article and unfortunately, since everything was pretty much done anonymously there's no way to actually get in touch with the family or the man that the story was written about. 

I can only trust that the courts had other reasons, and not only the reasons we read about in the article, to base their decision on. 


Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 12 years ago
Posts: 4721
 

Sadly, this man has passed: https://www.dailymail.co.uk/news/article-8405789/Patient-34-dies-judge-ruled-right-refuse-permanent-stoma-bag.html

I think it's unfair that a lot of the focus was put on the stoma as being the reason why he wanted to die, as I'm sure his health history and overall quality of life added to the complexity of this story. 


Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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Dona
 Dona
(@dona)
Joined: 9 years ago
Posts: 832
 

That is sad indeed. And very unfair and probably untrue to blame the 'condition' of being an ostomate.

Unfortunately our 'condition' leads to much speculation, fear and horrible visuals. Thanks for enlightening people, Eric.


Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


   
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