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StomaLife - Would this work for ileostomates?  

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IleosTony
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May 4, 2019 12:39 pm  

Has anyone seen this yet? I'm completely blind and thus can't see this video, but it sounds like a really souped up stoma cap. Thoughts?

 

A Revolution in Ostomy Device Design

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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May 4, 2019 12:53 pm  

Hi Tony, A similar device has come up on the site before. It’s a system that is like a stop valve which can be opened to empty output. Yep the concept sounds good but would not be without problems. What if the company went out off business, output banking up and causing a blockage Also if it needed reversed more surgery. Who knows what the future holds but at the moment a good pouching system is still the best 👍

ileostomy 31st August 1994 for Crohns


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IleosTony
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May 4, 2019 1:31 pm  

Hi John, thanks for the reply. I had a feeling this might not be the panacea it purports to be. I hadn't even thought of the question of the company going out of business. Of course, they would take out patents on the device, and then no one could make a competing system so easily.

 

I recently read an article that discussed a human heart having been 3D printed with actual living cells. When they come up with a way to print a nice shiny new colon that won't turn into something that looks like chewed-up raw sausage from the inside, I'll be the first in line to snap one up, you know, right after I win the lottery or make friends with a billionaire to whom money means nothing. Hahah!

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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May 4, 2019 1:40 pm  

Modern Medicine is a wonderful gift, we really don’t know what will be possible. When you find that billionaire could you pass on the address. 😂

ileostomy 31st August 1994 for Crohns


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IleosTony
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May 4, 2019 1:47 pm  

Oh, you bet I will. Lol. I believe it was Scrooge McDuck who said, "The problem with having a lot of money is that everybody wants it."

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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LK
 LK
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May 4, 2019 11:26 pm  

Hi Ileos Tony...I watched this video a few times today and I have to say they show a worse case scenario which always makes someone cringe and think that having a stoma is the worst possible thing that could happen to someone. Not so.  The tummy they show has a whole lot of infection going on, and a double stoma, one higher one lower, and is still very new. It really looks like it was not made in the most sanitary conditions to begin with or the recipient was  very sick , weak and possibly infected from the start. As John said, we had a lively discussion a while back on this over a similar product promising rainbows and sunshine. Maybe one of the group can find it and get you to it, along with the following discussions we had,  I am not sure how.  Sure it would be ideal to have a gut in perfect order, but disease or accident brought us here in the first place. Both videos hold great promises, no bags, no inconvenience, no muss no fuss. Yet they both require something round and hard attached to you all the time, and not really small or discreet, and then opening a valve, hooking up something else to have a  scheduled release of output. Both products look "hard", one has our tissue growing around a woven mesh inside us, meaning  more surgery for hook up, more surgery if something goes wrong and then you start all over again. Also I noticed that they have a period of time for healing before they can be put the instrument into action. So you wear a bag till healing and acceptance of another foreign product you may react to. Then possibly more surgery to disconnect one and put gadget into action. I find that what we have right now is pretty great to deal with and comfortable, discreet the majority of the time and the only time infection happens is if we ignore a leak, get injured or develop a fungus under our wafer.  Yes we are at risk of certain issues but if we take really good care of ourselves most of these can be avoided. I do not find my equipment to be a pain in the stoma or what I have for a butt.  I can not imagine shutting off my intestines till I had "time" to empty them. Both need attaching to either another gadget or like this one a hose of some kind.  When my guts need to roll, they need to roll and the sooner I loose it the better or it is down right uncomfortable. They say with this product we can release gas by ourselves. We can already do that.  Sure there are days that pans for leaving may have to be changed, but then I usually am not well anyways. To me, having a stoma is a real gift and I have never regretted what I have gone thru to get here. If anything I have a much greater appreciation for what it is and does then anything. 

Linda


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IleosTony
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May 5, 2019 5:34 am  

Hi Linda,

 

Wow, I suspected this might not exactly be the fabled greatest thing since sliced bread, but it's worse than the hopeless, protracted, inttractible, and life-threatening Crohn's symptoms my ostomy eliminated. Also, I did get that alarmist sort of pity vibe from the tone of the video. It was subtle but definitely present, an exaggeration of the potential disadvantages of having a stoma. It might not be perfect, but my ostomy sure made me feel a whole lot better, not to mention that it saved my life (see my signature). No more bleeding, no more episodes of incontinence, no more insufferable abdominal pain.

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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May 5, 2019 7:06 am  

Hi Tony, very well put its the way I have always seen my stoma. Far from a i now can’t do what I used to attitude, because of the bag now on my side I don’t have to be ill in hospital and watching the World go by. Some of the most inspiring people I have met live with a disability or have fought an illness 

ileostomy 31st August 1994 for Crohns


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IleosTony
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May 5, 2019 7:16 am  
Posted by: john68

Hi Tony, very well put its the way I have always seen my stoma. Far from a i now can’t do what I used to attitude, because of the bag now on my side I don’t have to be ill in hospital and watching the World go by. Some of the most inspiring people I have met live with a disability or have fought an illness 

 

I wish I could take credit for developing this positive attitude on my own. Of course, these blessings seem obvious, but I needed my wife to point them out when she noted how sad I was over my ostomy.

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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May 5, 2019 7:40 am  

Yep that’s true, when I first had the words ostomy said to me I freaked out and thought how could anyone live with that!! It was my Mum who made me see the bigger picture. That’s why discussion and support is so important. Not only from tips and how to care for a stoma, it’s the fact that someone’s story could be the light bulb moment for someone 💡

ileostomy 31st August 1994 for Crohns


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IleosTony
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May 5, 2019 7:55 am  

Funny, but I had just been thinking about the quote from the man in the video that a bag is not the answer when I received the notice of your reply. The man's statement struck me as a bit hard-line when I heard it, but I chalked it up to an exaggeration typical of the psychology sometimes associated with sales copy. The guy couldn't be more wrong. At present in the year 2019, a bag is the best answer we have. It sure beats intractable Crohn's or colorectal cancers, peritonitis born of intestinal perforations, etc. Would we rather not have to have an ostomy? Sure! Would we rather die than have an ostomy? Surely not! If you happen to be reading this post beyond 2019 in a time when ostomy pouches are outdated and no longer necessary and perhaps think that what happened to your digestive tract is a tragedy, think of how it used to be. People used to have to wear a bag just like people used to have to drive their own cars...on the ground...powered by gasoline instead of whatever fuel you use in your day. My point is that it's all a matter of perspective. Some of us may need help changing that perspective, but once our eyes are open, perspective is a matter of 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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Dona
 Dona
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May 5, 2019 12:24 pm  

Hi Tony,

You are so right. Its all a matter of how you look at it . I told my self BEFORE my surgery that I would not ever feel badly about my stoma.  And, I don't.  Occasionally I feel bad that I got sick, but never about the fix!  I do try to educate others about the fact thats it really just fine ( great actually) to have a functioning stoma. So much better than the lives most of us were living before we were ostomates.

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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May 5, 2019 6:26 pm  

 I call it an "appreciated ostomy" for good reason. Having lived for fourty years with bowel disease, excruciating pain, bleeding, feeling like you wrote Johnny Cash's song the burning rings of fire (and then some), and the exhaustion.  My biggest fear was running out of toilet paper!  This ostomy is such a blessing, it's convenient and discreet the majority of the time. I have never shed one tear or felt sad over having an ostomy, and certainly never felt sad about it either, not even the year I was in the hospital, (yes in one shot.)  My scar tells its own story of survival. The human body is an amazing thing and I would never go back to what life was before hand, ofcourse with the exception of my man.  When my stoma finally happened, all I could see in front of me, were open doors. Attitude is everything, but with out trials and gratefulness in front of it, it can be hard to accomplish. I truly feel like this is the best thing to have in the whole, wide, world. At about 8 years in, a while back, I wrote a note to my retired surgeon and thanked him for saving my sanity. A call from his old receptionist, I was told how much he appreciated that note. It only took a few moments to write and a stamp. Keep looking ahead, strive to survive and share what you have learned along the way...as John said...a light bulb moment for someone else. I realize that it is not always easy to land in the gratefulness isle, right away, but try and plan to get there someday if you can. A loss is a loss. It would take me sometime to get here if I lost my eye sight, I am rather fond of seeing where things are, and I have enough trouble avoiding walls and door frames with it and a record number of healed but broken toes to prove it. I am sure walls move around. Being blind is a whole new ball of wax and not one I want to play with. You are all very brave in more ways then one. 

Linda


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VeganOstomy
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May 5, 2019 8:54 pm  

This product, and a few others have been brought up and none have been commercially available. The closest is BICR, which is a continent ostomy, but they aren't as wonderful as you'd hope and traditional ostomies are still preferred. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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IleosTony
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May 6, 2019 7:05 am  

Hi Eric,

 

This topic and particularly your reply bring to mind what I've long thought of blindness and screen reading software. There is no substitute for actual eyesight. You can buy or write the best screen reader ever. You can add features and functionality. You can make it smart enough to figure out what information the end user would want to know right away and what information is low-priority or even extraneous enough to be ignored altogether. Screen readers enable those who are blind to use computers and smartphones well enough to do very well in life as compared to before such tools existed, but they can't be and never will be comparable to seeing with one's own eyes. The true answer would be to design and successfully create eyes that truly work as well or better than the natural set that failed the blinded end user, but right now screen readers are the best we can do, and they are pretty darn good at that. I can use this forum and do my job, etc., because of screen readers.

 

Ostomy pouching systems are the same. Nothing modern technology has come up with can be a substitute for the failed digestive and excretory organs. The answer would be to find a way to create a system that behaves exactly the same way or better than what the patient has lost, but right now the pouching systems are the best we can do. They may not be just like having our damaged organs back, but they are pretty darn good, and they are certainly better than what used to be available to human beings in the past, which was nothing at all.

 

That's where perspective matters so much. We can rail against the loss and be miserable and nonfunctional, or we can use the wonderful tools that we have available to cope and accept that it simply can't be the same. The former is no way to live. The latter is the only way to keep living.

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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May 6, 2019 11:28 am  

What a refreshing perspective! Thanks for writing that, ileostony! 

My personal position is this: a surgical device like this one offers no real options to modify or tweak how it works. If it doesn't work perfectly, you're pretty much stuck. On the flipside, ostomy appliances are always getting better and there's almost always a solution available that patients can implement themselves to enhance their experience. This is why I'd prefer to stick with ostomy bags - the chance of it working in the long term is only a matter of finding a combination that works, and not just luck. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Dona
 Dona
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May 6, 2019 12:41 pm  

Hi Eric,

I remember about two years ago someone here posted a link to a terrific article about the history of ostomies and it's treatments and devices through the ages.....

I can't find it. Can you? Might be good to repost it here ( or a new thread). Many of our newer members may have not seen it. It did make me truly grateful I live in the modern era . Thanks.

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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IleosTony
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May 7, 2019 1:58 pm  

Hi @Dona,

 

This is straying away from the original topic, so I posted an article I just found on a Google search in its own topic. I don't know if it's the same article you remember, but you can find a link to it by clicking here.

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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