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[Closed] Did Stoma make you disabled? why and how, or not?  

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dogtalkerer
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August 15, 2019 12:44 pm  

curious how many people out there think their stoma made them disabled?   and were you more disabled before or after your surgery?

there are social things I will not do anymore, but doesn't mean I can't, just prefer not to,.  like skinny dipping or swimming without a tee shirt.

Are you comfortable being classified as a disabled person?( I am not, consider it an insult)


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john68
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August 15, 2019 12:55 pm  

My answer to your question is No, I have restrictions on certain things that I used to be able to do like lifting concrete blocks, my roll with my work has changed but still work in the same industry. But if I Am defined by society or others it does not bother me! I have achieved more since my ostomy than before although that could be as much about having it when I was younger. This is a discussion which could offend so discretion is important 

ileostomy 31st August 1994 for Crohns


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VeganOstomy
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August 15, 2019 1:41 pm  

These are valid questions.

It's important that we define what "disability" means, or you'll have a lot of opinions here.

For example, I can't file for disability, but I do quality for a Disability Tax Credit (stomas are specifically marked as a qualification).

While rare, stoma and related surgeries may cause an actual disability (i.e. Surgical error, nerve damage, etc.) which puts someone in a worse situation than before they went to surgery, but that's something that can happen with any surgery.

I don't consider myself "disabled" in the traditional sense. I'm still able to walk, can clothe myself, feed myself, etc.

However, I am dependant on medical supplies and I do have restrictions that would otherwise have not been a problem before my surgery (and my illness).

But then again, how are we defining "disability"? There are "disabled" Olympians missing entire limbs and can athletically outperform most healthy adults. Do they have a disability? Should they be considered disabled? Many would still reliyon an assistive device, just like we do.

Am I comfortable being called "disabled"? Sure. That badge entitles me to benefits that help me pay for my ostomy supplies. I don't see any other context where being called disabled would offend me,becasue I know what I'm capable of and what I've been able to accomplish.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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IleosTony
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August 15, 2019 3:32 pm  

John, Eric,

 

Great answers that hit on the heart of the matter. Having a stoma does place some limitations on some people, however minor. It definitely creates a dependence on sometimes expensive medical care and supplies, and taking advantage of aids put in place for that can make life a lot easier. As someone who is blind, I don't like being considered less capable even on paper, but it has given me help and opportunities that I would otherwise have missed out on, so it's a trade-off of a little embarrassment for often a lot of peace of mind.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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john68
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August 15, 2019 3:58 pm  

Tony two of the most inspirational people I have known over the years are a guy who is an amputee and the other lost his sight in a car accident, I never knew 2 guys who where so inventive in getting over problems. They would have put a lot of “able bodied “ folks to shame!

ileostomy 31st August 1994 for Crohns


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IleosTony
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August 15, 2019 4:06 pm  

Thanks John,

 

And I bet they would be the first to acknowledge that the change in their bodies did change how they had to do things and in some cases force them to give up some things. It's a matter of degrees. From a strictly practical standpoint, having a stoma is a relatively minor disability. However, that same pragmatism might incline someone to accept a certain label for the purposes of classification to take advantage of services in place that would ease some of the difficulty associated with said disability. The beauty of all this is that no one is mandated to avail himself/herself of any of it for any reason, and that's cool too if that floats your boat. I think of it as a question of utility and choice.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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SqueakyandLiza
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August 15, 2019 7:46 pm  

I don't think of my stoma as a disability. I have many traits that impact my life way more than Squeaky does.  😂 If wearing my heart on my sleeve isn't a disability, then neither is wearing a poo bag (for me, personally). 😂


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sjlovestosing
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August 15, 2019 7:54 pm  

All good thoughts, guys.

Though I don't consider myself disabled, I still see the importance of the workplace being understanding of our need to empty out when necessary. The last place I  worked didn't have a convenient bathroom (I was on the 3rd floor, the loo was in the basement in the next building!). At the time, I was having issues with pain and bleeding, so it certainly was not a pleasant situation! 

Stella


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Paul Miller
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August 15, 2019 10:14 pm  

No my car accident made me disabled. I shattered my hip broke my pelvis broke my back fractured my head. I was in a coma for 2 months. I had many surguries. My last hip replacement paralized my leg. I had a trach and a feeding tube for 2 years.

Paul Jason Miller


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LK
 LK
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August 16, 2019 2:26 pm  

Welcome Paul Miller. You came I  on the tail of a hot topic.

dogtalkerer....for the sake of newbies, let's clarify a few things here.  A "STOMA" is a portion of intestine brought thru the abdominal wall, sewn by a surgeon into place to heal in it's new location, only to spend the majority of a stomas life living in a specially designed, expensive glorified plastic bag. The "stoma" itself,  has no nerve endings, so it does not typically hurt or cause a disabilty. It is the disease that does that.

Let's also define a few things here too. The definition of DISABILITY...having a "condition"  that "markedly" restricts ones ability to function physically, mentally or socially.  Not "normal".  Interestingly, HANDICAP...has the same definition. MARKEDLY...to an extent that is clearly but not always noticable; significant, not normal, persistent.  NORMAL...conforming to a standard: usual, typical, expected.  USUAL...customary.  DISEASE...a disorder of function producing signs and symptoms, a direct result of DISEASE, causing life long adversity often with vissitude.  ADVERSITY...affecting a person; causing distress, suffering, affliction, catastrophe, misery, pain, trauma, crisis, torture, and many more. VISSITUDE...a change in circumstances typically unwelcome, unpleasant, a transformation, mutation and more.

More often then not, Disease is the cause of the stoma being born.  The stoma does not obviously on it's own cause a disability, it is the disease that changing ones life making it difficult to conform to normal. Re-read definitions above if you still have trouble understanding this. I am on disability because I am unable to work, because of disease and the affects it has on my body 24/7. Inflammatory bowel disease as you may have read when educating yourself about this disease, also is the cause of EXTRAINTESTINAL MANIFESTATIONS (EIM)...affecting 36% of persons with inflammatory bowel disease causing and affecting many other functions and parts of the body.  Affecting the skin, joints, eyes and the hepobiliary tract, basically the liver.  EIM...is life long, does not go away, remains.

Here, it is important to add that for the minority of persons who acquired a stoma thru trauma, the majority of them have there "stoma reversed", as in put back, and go on in life unaffected by the likes of disease, leaving them with a scar and a story to tell around a camp fire. Also leaving said persons unable to comprehend the severe  affects of disease on an individual's daily life. 

I can help educate a person wanting to "understand" the affects of "disease", but I will not defend myself or the title governments and medical attorneys use and unfortunate term "disabled or disability" to someone who likely had a stoma reversed by a short trauma in ones life, releasing them to carry on as normal.  These persons I have often found, live in a different reality then those affected by a disease that causes one to be disabled.

Linda


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dogtalkerer
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August 16, 2019 4:08 pm  

Linda,   you've gone WAY off tangent here.

I think its more than safe to assume someone computer literate enough to find this site and has an ostomy knows what a stoma is.     I asked 3 very simple straight forward questions .

 


IleosTony
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August 16, 2019 4:19 pm  

Linda, your answer to this question was very detailed. What I get from it is that your answer is that, no, your stoma didn't make you disabled, and you listed the reasons why not. Is that fair to say? If so, then I would venture to say that it does address the topic quite well. If I've missed the boat, then I apologize. It can be difficult to weigh in on such a subjective matter in a way that satisfies all possible viewpoints.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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VeganOstomy
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August 16, 2019 5:01 pm  
Posted by: @dogtalkerer

I think its more than safe to assume someone computer literate enough to find this site and has an ostomy knows what a stoma is.

I think Linda made a valid point by stating that the stoma itself doesn't really cause a disability, per se. The disease that lead to the stoma is more likely the source of marked restrictions, in other words the disability.

This illustrates a good point : unless we have clear definitions of what "disability" implies, everyone will have a different answer.

Perhaps you may want to clarify your questions, or at least offer a definition for "disabled" for others to work from. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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dogtalkerer
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August 16, 2019 5:33 pm  

vegan, feel free to change/edit  stoma to ostomy, I see it as a minor difference.

still re-read my first sentence.  I'm asking if people "think" their ostomy/stoma is a disability.

I assume some do and have very valid reasons.    "think" is a key word.  if there is a legal description then there is no need to ask question. its then black or white.

but by your own words vegan"""""it is in our best interest an a community of ostomates, that the governments, insurance companies, employers, and businesses of the world recognize an ostomy as a "disability" """""""

so ostomy or stoma? on an ostomy website, really who is confused?   who has an ostomy without a stoma?

signing off for weekend. go do something.


john68
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August 16, 2019 5:47 pm  

Dogtalker, I think no matter how we badge/define ourselves! Being someone who has a stoma brings many challenges, rather than debate on how we see wearing a bag we should be concerned with living life well with one and helping others do the same 

ileostomy 31st August 1994 for Crohns


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Dona
 Dona
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August 16, 2019 7:33 pm  

If I can add one more stir to this pot ...

How we define and label ourselves is a personal choice.

How we define and label others is the stuff of nightmares.

 

I am here to learn from others and to help when I can. I certainly have gained a lot from this diverse and thoughtful group of people ... whatever we call ourselves.

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
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August 16, 2019 8:48 pm  
Posted by: @dogtalkerer

I'm asking if people "think" their ostomy/stoma is a disability.

That's still a valid question, but without defining what you mean by "disability", we will only go around in circles.

If a definition cannot be specified, then this thread will only spiral in a direction that's not going to benefit anyone here. 

Can we at least agree on that?

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Dona
 Dona
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August 16, 2019 9:19 pm  

YES!  well said Eric. As always, thanks for your clarity of thought.

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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LK
 LK
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August 17, 2019 6:06 am  

Tony, yes, that's correct, the disease and extraintestinal Manifestations were the cause of  acquiring my stoma/ostomy,  qualifying me for "disabilty" and "handicap" parking.

Linda


dogtalkerer
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August 19, 2019 2:07 pm  

disability is well defined term out there, its not my word.   you could start a discussion on the topic.   I'm not interested in debating definitions myself, its a never ending round and round discussion that goes nowhere.

I just asked a simple question "do you think ostomy/stoma......"    I'm confident respondents understand the term.       there doesn't seem to be much confusion. 


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