New Ostomy Solution - TIES Implant - A Game Changer?

https://lescrohniques.wordpress.com/2019/07/03/ties-solution-la-revolution-de-la-stomie/

It's in French but Google can translate like I did below for you

Here's what they say about it:

The TIES® solution allows the patient to live without the constant wearing of an ostomy bag.
It is a titanium implant with a cover, implanted in place of the conventional stoma. The cover has a trap door that allows waste to be removed without removing the cover. A bag holder that does not touch the skin allows the bag to be secured when waste needs to be disposed of. It also prevents skin complications.

...................

What are the limits?

Currently, and although the TIES has received the CE mark (meaning it has met the regulatory safety requirement for Class IIb medical devices, including clinical trials in humans), it is not yet available on the market and is implantable only for permanent ileostomies. Nevertheless, the use in colostomized patients is under study.

Regarding the placement of the implant, it does not involve any more pre- and post-operative risks than a classic ostomy.

Currently OstomyCure has just started an additional clinical trial in hospitals in Sweden and the UK. The study is being carried out by Dr. David Jayne in Leeds, Dr. Ed Westcott in St. Thomas in London, Dr. Smolarek in Plymouth, and they are talking to several other centers.

I think I told you pretty much everything about this system which seems to me to be a major advance in the field but if you are in need of information, do not hesitate to visit their site: https://ostomycure.com/ and to contact them, they will be happy to answer your questions (if you speak English of course!)

I wish some professional would explain to us :)

Merci

Danielle from Quebec, Canada

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Hi Shitt,

This was discussed back in 2019 on here when it first came out. Seems it's still not ready for prime time, which might tell you something. What's not explained is how this is better than having a bag. I'm not talking about the obvious, but about how you won't be emptying it any more frequently than you do your bag. Without the colon, which acts as a reservoir where water is drained off and your crap is sort of compacted..........I'm not seeing what we're really gaining here, except not having a bag. And in exchange for that, you will have to be vigilantly careful about popping your cap and emptying pretty much whenever you normally have output. With a bag, the bag itself is the reservoir. Without the bag, your small bowel will need to be a reservoir, which it's not designed to do. This is sort of like a J-pouch without the J-pouch. When you wear a bag, you don't have to worry about emptying it until it gets full, or to a level you're no longer comfortable with. With just a cap over your stoma, you're going to have to open it and drain whenever you have output.........because there's nowhere for your output to accumulate and hang out until you decide to open the cap. If you don't open the cap, it's gonna feel just like a blockage. Your abdomen will become distended and bloated........and if you continue to allow that to happen, your bowels will say 'screw this' and form a fistula to bypass the cap you refuse to open when needed. You can sort of try this yourself right now. When you know you're about to have output......put your hand over your stoma and don't let it out. That's what's gonna happen behind the cap. Keep your hand there as long as you dare............that's the function of the cap. By surgically attaching the cap to your skin, you eliminate your output blowing out from under your barrier.......but that buildup of pressure in your bowel is not going to feel good. So without a reservoir being made somehow in your small bowel to buy you some time before you have output.........I'm not seeing the benefit. And because it's surgically attached..........if things do go bad......they might go really bad.

The other maybe less of a concern is that I'm active, which means I'm always getting my bag caught on something or bumping into something with my stoma. If something really grabs my bag, it'll rip my bag and/or barrier off. Which sucks, but would suck a lot more if it ripped off that cap that was sewn into me. I can just see me now........trying to stuff my bowels back into that little hole while my chickens want to peck at the big wormy thing.

Yeah........I'm going to pass for now. Maybe when they get it all ironed out, but I'm (still) not getting my hopes up.

Regards,

Bob

Not trying to be a downer on this idea, but I think it would be much better for those with a colostomy, who still have their colon (i.e., reservoir intact). Then I can see it giving some relief to frequent bag emptyings.

I agree, Bob. Wonder why they did trials for the ileostomy with all the possible complications you mentioned. I think the colostomy would work so much better and you can choose to empty each day at a certain time convenient for you. Look at the skin that would be saved! That is a nice benefit! Sure hope they get this worked out in my lifetime. I will volunteer for a trial over here!
Puppyluv

Not new. I researched a capped stoma when I ended up with an emergency ostomy in 2006. But not recommended for Crohn's patients.

It is pretty awesome though.

I always welcome new ideas and this one seems to be great (on the surface so to speak). However, I take note of what Bob is saying about ileostomies and the dangers of 'snagging' this device.

My perspective for my own colostomy would be that I already wear a plug - after irrigation. I have no output during the day and cannot percieve any additional benefit having this sort of device as a permanent fixture.

It is good that people are thinking about the problems of stomas and how to resolve them. For some people this will provide some hope for a better future and that cannot be a bad thing. I just hope that the potential complications do not outweigh any benefits.

Best wishes

Bill

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

I agree, it is encouraging. I have thought that as transplants of heart, lungs, etc., there does not seem to be much progress in relation to our condition, so I am very pleased to read these posts. Thank you.

Yes, I read about it in a UK ostomy journal around 5/6 years ago. It was trialed at a UK hospital about 2 years ago, and a member in another hospital was going to be one of the first in the UK to have it, but I haven't heard a word about them or the trial since.

It's not for me, but I can see some would prefer it to a bag.

Patrick,

You bring up an interesting point. There have been advances made in bowel transplantation, just as there have been with other organ transplants. The problem now isn't the technology... immunotherapy to deal with organ rejection has come a long way... it's not perfect, but at least you have a decent chance of survival. The problem is who's gonna pay for it. Transplants are only covered by insurance as the last resort to save your life. So unless you're practically dead already... no insurance company will shell out the hundreds of thousands of dollars for a bowel transplant just to make your life better than it is now. Typically, bowel transplants occur when your liver has failed and the liver transplant is what gets you the bowel transplant at the same time. I've researched this extensively when my liver was taking a beating from my being on TPN after my short-gut surgery.

It's sort of funny... you go to a transplant center and it's an impressive facility. Walls of monitors showing videos of people just like you... who are alive today because they got their bowels transplanted. They show firemen running around, dads playing with their kids in the yard, moms doing crafts with their kids... really nice stuff. And you think to yourself... hey... this would be great... I get my life back before I got Crohn's or UC or cancer, etc. They interview you and you chat about probabilities of success... and they tell you why they are better than all the other transplant centers, etc. Then they tell you the bad news... which is you're not sick enough. But hey, don't fret... as soon as your liver shits the bed, we'll be ready to give you a new liver, bowels, gallbladder... whatever you need. Only a minor problem is that your body will be so f&*ked up at that point, and you'll be so close to death... there's no guarantee we can save you... but heck, we'll try. Assuming, of course, we can find a donor who'll let you have all those organs at the exact time you need them. But don't worry, we'll put you on the list and hook you up to machines to keep you going... until the FedEx guy shows up with your new organs. And hopefully, he won't deliver them to the wrong address.

So unless you're financially independent and have half a million to spare to get some new plumbing... we won't see any of these advances in bowel transplantation applied to us until the cost comes way, way down... or someone forces the insurance companies to cover it. And that won't happen, as it would open up a Pandora's box of transplantation simply to make a livable situation more livable. Drunks wanting a better liver, heart murmur folks just wanting a better ticker... etc. So it ain't happening anytime soon. But we can hope.

When they figure out how to grow new intestine from a few of our cells... or how to 3-D print human organs... the line will form behind me... so step right up!! And Christmas is right around the corner!!

Regards,

Bob

Danielle, this looks interesting. I am encouraged that companies are trying new things - without that happening, we would never advance, and we would all be worse off as a result. I can see that this might be an advantage for some ostomates, and there will never be a product that works for everyone. So if this is beneficial for some people, that's wonderful. Please let us know if you find out more, or especially if you decide to try it yourself. Thanks for posting this!

Laurie

Hi Bill,

How long have you used a stoma plug? I have always thought about it & would really like to give it a shot. I do irrigate so no problem there. nbsp

I guess I just don't understand my own body well enough.  I have a colostomy and can't imagine my colon acting as a reservoir for any length of time.  Bob's suggestion to experiment with preventing any discharge for a time sounds like a wonderful idea but not for me.  The few times my wafer was a little too tight around the stoma the pain was terrible.  

Mike

Wow, Merci d'avoir expliqué de long en large cette transplantation qui n'arrivera pas de sitôt au Canada comme vous au USA. Vous avez apporté des points très forts qui m'ont fait réfléchir sur ma situation et d'essayer de l'accepter au lieu de chercher ''le miracle''. Merci Bob

Wow, Thank you for explaining this transplant that will not happen soon in Canada like you in the USA. You brought some very strong points that made me reflect on my situation and try to accept it instead of looking for ''the miracle''. Thank you Bob

I have both a colostomy and an ileostomy. At least mine, you can't really feel when you have to go. It just goes when it wants. So, I think your bowel will have to be retrained to stop going when it hits the plug. We know that won't happen. I see a blockage in the mist, or popping the cork sort of speak. I will stay with my bags. I've had them since 2006, so I'm used to it.

Yup.   Both our ileocecal valve and sphincter muscle are (were) there for a reason.   Without them we're shit out of luck.   I don't think you can do much bowel re-training without them.

:0)

Bob

It is possible to train your bowels using irrigation. People who irrigate every day (I don't - I only irrigate infrequently) can train their bowels to a schedule.

Laurie

Hi Laurie,

Is that 'training'.......or just how long does it take for their bowels to fill back up and need to be emptied again?  Without a sphincter, I don't understand how a colostomate would have any control in regards to stopping the flow of output. What is it they train?  You can't stop peristalsis, so when your 'stuff' gets to the stoma.........how do you tell yourself not to let it out?  Maybe the 'irrigators' can tell us.  Sounds fascinating.   

Thanks,

Bob

I never knew about irrigation until about 2 years ago. I had my double bags in 2006. I asked my doc about it. She said it won't work for me. So everything is free flow. I pee all day. The more you drink, the more you go of course. And my bowels just work more about an hour or so after I eat. Sooner if food was too greasy, or just didn't agree with me. I never knew. One day at a time.

I do every day since 3 years 1/2 with no problem.

Danielle :)

I have been irrigating my stoma for over 3 1/2 years now, and you can't train your bowel. But if you have the right nutrition for you (try-and-error on your food) .... if you have consistency in your irrigation (always do the irrigation at the same time), in this case, your system will adapt well ....... like when we had a rectum and every day at the same time or almost, we had to go evacuate.

I always compare my ostomy as raising our children ..... it takes consistency to raise our children well, like our ostomy ... BUT my children are not perfect and my ostomy neither ... lolllllll

Danielle from Québec, Canada

PS Google translate my French version to English :)

Irrigation is a method of managing output for colostomates. If used regularly, the bowels will eventually become habitual, meaning that output will happen at prescribed times, with no output between irrigation sessions. This may take months to achieve. Whether we call this training or habituation is semantics.

Laurie

I understand how titanium is used in hip and knee replacements as it is fixed to bone. But fixed to skin, muscle, and bowel? Sounds like science fiction to me.

Hi JMC,

The titanium doesn't "fix" itself to the skin... the titanium is a mesh or screen and the skin grows around it and through the openings in the screen and bonds to itself. Once the screen is fully embedded in the skin, it appears that it has bonded to the skin, but it hasn't... they remain separate things. Titanium is used because it's the most compatible metal with living tissue. Which just means it's not going to harm the tissue and can resist corroding from those wonderfully nasty bodily fluids of ours.

;0)

Bob

Well, if it's "mesh," I just hope Johnson & Johnson aren't involved because that's just another worldwide class action lawsuit waiting to happen.

Mesh doesn't work and just gives you a shitload of other problems you didn't have to begin with.

Good luck to the guinea pigs!

Yeah, if you watch the video that Shitt links to up in his first post... you can see the mesh and how the intestine is pulled through it, then folded over and stitched. Maybe 'mesh' is the wrong word... 'matrix' or 'framework' might be better.

Later.

Bob.

I do see the concern of some people when they say they would be worried if you didn't empty the cap enough. I have a permanent colostomy and if all worked out with it, I would love to have that versus the bag hanging on me all the time. I would be very diligent about emptying it several times a day just to make sure I didn't get it back up. But I think it would be nice to not have the bag always worrying about what I'm going to wear and how it looks. I don't know, we'll see what happens if it does become available, but it does have its pros and cons, I suppose.

Hello Dlynn.

If you have a permanent colostomy, is there any reason why you could not irrigate?  Those of us who have chosen to do so, manage our stomas during the day without a bag ( & without output)! This is so much more convenient and I wear a stoma plug where the flange fits flat on the skin so there is no protrusion or obstruction. We do what we like and wear what we like without the sort of concerns that bags and toilets might raise. 

Just a thought!

Best wishes

Bill 

I get a lot of wind at times due mainly, I think, to nasal congestion, so would excessive wind be a big problem in using irrigation?

Bill,

I am replying to the message you sent me about irrigation and the colostomy. I am very curious to see what you mean about that letter as I have stated I am new to this ostomy world and I would love to figure out the irrigation thing so as to not have to wear a bag all day and control it. Can you please give me more information or instructions on how to do this? I would absolutely love to do what you were doing.

Deanna

Good evening,

This video should help you to start.

https://www.youtube.com/watch?v=BTR9YcgyImY

As far as I'm concerned, I do the direct irrigation on my knees in front of the toilet without the big bag like the video... too much work... lolll and when the 6 cups of water are finished, and as soon as I remove the cone, as soon as the residue comes out in the toilet. 35 minutes on my knees and it's almost over for me.

Good luck from Québec, Canada

Danielle

After watching the colostomy irrigation video, I am so excited to do this. This would be amazing and solve all of my concerns as far as the bag and control of my output. I will be reaching out to my ostomy nurse tomorrow and get that set up for this week.
I am so thankful that I inquired about this and you gave me very helpful information and a good video to learn from. Once I get this going, I believe it will free me up so much more than just having the ostomy bag.

Deanna