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Pavo
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February 7, 2019 3:25 am  

Hi Eric,

do you have any info on TIES system from OstomyCure... Looks interesting.

Please check their web page:  https://ostomycure.com/

Best regards


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VeganOstomy
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February 7, 2019 10:08 am  

Hi Pavo,

I'm aware of this system but have my reservations about it. 

Basically, it creates a continent ileostomy - which we know from experience, isn't as great as they make it out to be.  In fact, continent ostomies have been around for decades, but we don't see many people with them.

Unlike with BCIR, where the opening is covered with a medical gauze, I'm really not adamant about the large, titanium cover they use with TIES. I also don't like the fact that your output essentially backs up until you drain it - which, by the way, I see no video/images on how draining actually works. It may require you to bring around tubing and other equipment.

On a personal note, the website name "ostomy cure" bothers me a lot - like an ostomy is some disease that needs to be cured. 

Those are my thoughts, anyway. LOL 

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Marcie
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February 7, 2019 10:23 am  

Amen Eric...……….  !!! We need body, mind support with our issues..  Not to be put into an area of behind the normal.  Takes so much to bring ourselves to the front of the line.. We  know there is no "CURE" le' say-- Just stronger Ostomates ! Here, we see different body shapes and work with them.. not the perfect body advertisements.. like that one.. 

 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Dona
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February 7, 2019 4:33 pm  

I have a lot of the same concerns and questions about this system. It would be nice to have REAL input from people who have used or are using this system.

Seems like it is still in the testing phase? This is a quote from the weblink above:

"We know that TIES Solution is a safe concept for ileostomy patients What we would like to establish is a scientifical base which will prove our product claims in a small number of clinical centers" says CEO Ostomycure Dr. med. Benedict Broenniman.

I also have issues with 'ostomy cure' name and the use of the phrase 'physcosocial problems' in their introduction.

 

For me, one way I KNOW I have to empty my bag, say in the night when I haven't gotten the gas out via the EZ-Vent, is that I become nauseous. When nothing comes out and it all builds up in there it makes me sick. Biofeedback wise, how would this internal system work any better?  Would I feel ill all the time? They said that the illium eventually stretches out to form a kind of pouch holding tank ...but??? Questions aplenty.

AND.... YES! I wish I had a nice tight six pack abs stomach like the model! HA. and was 22 again...

 

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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Dona
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February 8, 2019 1:02 pm  

It looks like this system is undergoing testing right now.

The dates on this piece posted by the NIH indicate  a start date of april 2018 and a completion date of 2020.

I doesn't look this system is on the market yet. But I am not sure.

interesting reading anyway.

 

https://clinicaltrials.gov/ct2/show/NCT03416023

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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john68
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February 8, 2019 1:38 pm  

Very Interesting Reading Dona, If I am reading this right it seems to be like a application and a set of legal guide line for trails of the product to take place. The product came to light a few months back on the forum. I agree the term "Ostomy cure" is an insult, far from being a burden or hindrance the ostomy is a very liveable and normal medical procedure. I also agree and cannot see how the output backing up and not being allowed to flow can and will only cause issues/problems. Who knows where ostomy care and equipment will go in the future and research and testing for any new products have to start some where. I think if you look at an ostomy from the perspective of a person without one this probably seems like a great step and development, but from the ostomy community I think we all know the problems the Ties solution poses. We have some great ostomy equipment on the market at the moment and more improvements will come I have no doubt. A cure and prevention for the illness that lead to an ostomy now that would be progress!! but until then we are very glad to live with a stoma and live well.

ileostomy 31st August 1994 for Crohns


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Dona
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February 8, 2019 2:01 pm  

Yes, I agree. They never really explained in the first article how this thing is attached or showed a picture of it with the 'lid' open. I wonder whats under the hood. ???

It mentioned lapraoscopic surgery is used to install the devise.

Certainly the model they used didn't show any signs of surgery scars, laparoscopic or otherwise.

I am not really sure if there are any humans currently using this system. I couldn't tell. I also couldn't tell how exactly it was emptied...they listed times to use the bathroom on that timetable, but did it go directly into the toilet? into a bag...and then into the toilet?

If anyone knows it would be interesting to know.

I hope they talk to some ACTUAL ostomates sometime.

And ... how would you get the gas out?

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
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February 9, 2019 4:37 am  

Wow, this is some system but they fail to give enough information, (probably for fear of competition), for anyone to really make a decision. I do not know about anyone else, but when "Rose" is ready to blow, she blows! I can not imagine holding that back long enough to get to the toilet. It does not look like there is a way for gas to escape on a regular basis either. Bloating is no picnic, we all know that, I can not imagine having to run to the bathroom the let the gas and who knows what else come out when we need to release the gas. They consider us a "smelly" people.  How nice of them. It is lack of information on their part. I had to chuckle at their bathroom schedule.  Surely, that is not realistic. 

Linda


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VeganOstomy
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February 11, 2019 11:27 am  

One thing to note - is that when an "internal pouch" system (which this appears to be) fails, you end up losing small bowel when a new stoma needs to be formed. That means the next stoma may be a very high output one. 

So there are risks and benefits from anything like this. In addition, I'm not even sure what would happen if you developed a hernia while having a system like this attached to you. 

It'd be interesting to follow up with the trials once they publish the results. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Pavo
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February 13, 2019 12:10 am  

I agree with all of you about what you have said about the system (and the problems that you see)....however it just crossed my mind...what if we have this system only replacing vafer (how many skin problems we could solve) and have ability to mount regular bag to it instead of cork (removing obstacles that current solution have with bloating, feedback etc.)....


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LK
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February 13, 2019 2:30 am  

Howdy all...I went back to the info supplied and then I went further by sending out a request for more info as a patient...which I never think f myself as and I was surprised at the info sent back to me. They have permission to start a  trial period. The gadget is said not to touch the skin at all.  This means it sits above it. The basket type weave we see in the pictures, is to have our tissues and fat and scar tissue and so forth grow and weave in and around the baskets weave material. They say it can take some time for the guts to settle so a disposable bag is worn until your guts settle. They say that the holding back of fluids will cause the intestine to stretch widen, and become like an internal pouch, then when the bag is attached, the cap can be opened and the bowels release there treasures. A disposable bag is used at the "scheduled" bathroom breaks. They give no info about gas. The gadget does not touch the skin at all eliminating skin issues of course. The way I see it is that this internal enlarging of the small bowel is done by holding back the treasures, and enlarging the piping. This to me is much like a forced J-pouch. Diverticulitis anyone? I think that the experiences of having the bowel enlarge on its own would be dangerous. When you think perforation, something I have been way to close to, it sounds like a painful journey to me. Not that getting to the ostomy surgery was a picnic, but a second round of that kind of pain, any volunteers? Being that you are not to wear the bag all the time and only for emptying on the scheduled bathroom visits, I think that makes a lot more bags in the landfill.  You are sure not going to wash it out and carry it around all day. They are not taking any new patients at this time.  They are working on a brand new click cap design. The gadget once up and working has to be replaced every week and has to be cleaned after every use.  IN the sink...where others wash their hands after using the washroom. They say nothing of a gas vent or a way to release pent up gas....that sounds a tad painful does it not? One of my concerns is what happens should  you bump or get caught on something with that hard plastic gadget stuck in your abdomen. How about a basket ball hitting you full on? A hockey puck, plus the speed, wacks you full on in the cap? Remember that the tissue has grown in and around the gadget. The force of a car accident and hitting the steering wheel, or the seat belt forcing itself further into the abdomen...ouch. I know that when Rose has gas, the only comfortable position for me, due to the short gut syndrome is laying down and doing some major mattress Olympics to move it around., and not the fun kind! Gas for me sits very high in my gut and not even walking makes it move. When all is said and done, there may be no part of this thing touching your "skin', but your tissues are expected to grow in and around it to secure it in place.  I thought the size of the piece, and so sorry I can not remember what it was, but it sounded on the large size to me which means that it would stick out  further from what I understood because of the cap.  All in all if they got this thing up and running and issue free it may be a "Jetsons" era type piece of equipment. They did mention that should things go wrong, not their choice of words, a brand spanking new ileostomy would have to be in place and then I would think there would be no second chances. So, that said...all in  all...interesting. I hope they publish results and keep my info handy, I would very much like to see where this gadget gets in the future. If you want to read this info yourself, follow the arrows in their post for further info and then fill out the form. I wrote in the I wanted further info and said I was a patient, their words...not mine. I think it took about four days before I actually heard form them but I was glad they sent what they did. One of the doctors is a man who had his hand in the Insulin Pump. I have a friend who relies on it something fierce. It has saved his life several times. I have to wonder just where this will lead. Sorry this is long, I really am trying. Eric.

Linda


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Pavo
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February 13, 2019 7:13 am  

LK, great analysis and the right questions to ask. Thank you


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VeganOstomy
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February 13, 2019 10:37 am  

Linda, thank you for writing that! 

Personally, it sounds like more trouble than it's worth.

A couple of "deal-breakers" for me, which may very well be non-issues when the product is ready:

  • What happens if you have a problem and you're traveling? Would regular stoma nurses be able to help patients or do you have to go to a special clinic?
  • Due to the "cap design", there's zero chance of wearing form-fitting clothes without seeing a bulge, which is something most people with an ostomy bag can get away with.
  • Washing it after every use (in the sink?!?!) may be impractical, inconvenient, or time-consuming. Currently, you can empty an ostomy bag in pretty much any situation: in your car, while camping, while in a hospital bed, etc. and not have to worry about needing to clean anything up afterward. 
  • The problem of hernias still exists, and might be more difficult to manage with this setup.
  • What happens if you have the surgery and the company goes under? Where do you get these extra caps? Will you be forced to have another surgery to make it a regular ileostomy?

So many potential problems. Problems that currently have options and solutions if you are wearing a traditional ostomy appliance. 

We shall see what happens in the future.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Dona
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February 13, 2019 1:43 pm  

Linda,

Thanks for posting and thinking more on this subject. It is an interesting idea, but at this stage of development, seems pretty scary to me. Also thanks for taking that step of becoming a 'patient' and getting more information.

I do hope they  are talking to real ostomates while they are developing this system.

I would also question how this device ages. If it has to be replaced on a regular basis or just fails would it lead to even more surgeries? As we age it gets much harder to undergo and recover from surgery. Might one reach an age where surgery was not recommended any more for any reason?  ( and as Eric mentioned already, you would loose a bit more illium with each one).

Thanks again!

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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Sydneychic
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February 15, 2019 7:09 pm  

I'm pretty excited to see the results of the trials on this system.  I would have volunteered for the trial if it was in Australia.  My issue is the bag, the stoma I can handle.  I hate all the adhesives that make me itch so much that I live on anti histamines.  I hate emptying in public restrooms.  I am always on the lookout for leaks.  I went to France for two months and my whole carry on was full of bag kits that I make up into ziplock bags.  I am always conscious of the bag.  


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john68
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February 16, 2019 11:51 am  

Hi Sydneychic, The bag and wafer should sit and feel comfortable, but that itching you meantion could be solved, why not start a new topic and explain the issues a little more. It’s a problem that can be sorted. 

ileostomy 31st August 1994 for Crohns


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VeganOstomy
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February 18, 2019 11:35 pm  
Posted by: Sydneychic

My issue is the bag, the stoma I can handle.  I hate all the adhesives that make me itch so much that I live on anti histamines.  I hate emptying in public restrooms.  I am always on the lookout for leaks.  I went to France for two months and my whole carry on was full of bag kits that I make up into ziplock bags.  I am always conscious of the bag.  

I completely empathize with you, Sydneychic. I don't know if a product like this will fix those problems or make them worse (i.e. emptying and cleaning this appliance may be more cumbersome than emptying a bag), but I'm concerned that your appliance isn't reliable enough to let go of that worry. 

As John mentioned, create a new topic and we'll see if we can find some solutions for you. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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LK
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February 20, 2019 12:05 am  

Sydneychic...Have you read the info on the bathroom "scheduled breaks" for the gadget? Tho we spend a fair deal of time in the bathroom emptying our pouch, the ties solution has many scheduled breaks and the output is held back behind a cap until the bag is attached and then they did not say how it opens, but after, there is a cleanup time, emptying and disposing of a bag, like we have.  The time before it is up and running can take months as the bowel is stretched by the output being held back to form what I would think is something like a holding tank. When my guts are full the feeling of unease and nausea can be overwhelming. I can not imagine that 8 or more times a day not to mention in between breaks, the gas build up must be crazy. I personally could not be a trial patient, as just the time alone putting on a new bag every single bathroom break, waiting for it to fill and then cleanup, may break me. I do agree that not having to wear a bag would be nice, but it is what it is. I also wonder about infection from the fluids being held back, if you hold urine back it is a great way to get kidney infections. The peristalsis of the bowel is meant to push out, not be, on hold. I agree with Eric...lets chat about your skin a bit. Even if the gadget is for you, your skin should be comfy beneath it.   

Linda


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