NEW TIES OPERATION. Alternative to an ostomy?

Ha blueglass I wondered the same thing about what happens if you have higher volume, how would you know it is too full.

I pictured like a fire hydrant when it is opened and water gushes out. The cap blowing off and output shooting out everywhere!!

I checked out the website- so it's like a giant metal stoma/j-pouch that sits inside your body forever... no thanks! I wonder if you can feel the hardness of it, internally, if you palpate the skin around it??? On the website, it says ppl. empty anywhere from 2-10x a day. I empty about 6x over 24 hours. And the poop just piles up inside your body??? Ugh... I don't know, I mean- an ostomy isn't exactly fun or attractive, but it works. If this metal device is the best they can come up with, even with all the advances in medicine... I'm not impressed. Somehow the thought of this giant, screw-top, metal reservoir implanted in my body freaks me out way more than a bag hanging off it! Plus, I'm done with surgery. Maybe if it were offered as an option initially, but to undergo a revision, in order to get one.... Did you guys read the user manuals too??? This thing has a serious learning curve/healing time! The ostomy was sort of fool-proof.

Zombie Apocalypse!! I never thought about that! I'd better get an order in....

Sticking to the topic, I share a lot of your concerns -- what exactly might be going on inside your body, how do you know when you need to empty, what happens if you drop the lid and it rolls into an inaccessible spot....In the little diary section of the website, there were an awful lot of bathroom stops pencilled in to the subject's day. Every two hours, until about a 6-8 hour gap, when the subject was dining and dancing....

I also wonder about gas. I produce a lot of gas, but how would I know when it is building up? And could I release it as easily as I do with my Hollister two piece? Think I'll stick with my ostomy.

Ann

I just did some research on this and I saw that this company has been working on this for a long time. If this trial was enrolling in 2013, you would think it would have some update, no?
/www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=363923

I can't find anything. it originates in Norway, perhaps the info I am looking for isn't in English.

Can you please provide the article stating that it's rolling out, when and where? Are the results of the study available? It seems like an amazing possibility for people who don't want an external appliance, very exciting stuff, just don't find much about it online - aside from old info from 2012/2013 & the webpage for the product. Everything you click leads you to a page where you fill out a form, there's no actual information on where the procedure is done.

There is one press release from 01/2016 i see, but that's just a matter of paying. The info included is very general, nothing statistical and no perspective from actual people who have undergone the procedure. I am hopeful about this coming to fruition as well but i don't see anything indicating that it's happening soon unfortunately. I'd love to see otherwise.

Vancouver-Girl said...


Me: Yesterday I emailed http://ostomycure.com/ and received general information back from a Dr. Broenniminn.

This morning I expressed my concern with findings of cancer and neurological, and auto-immune symptoms that have manifested from the titanium implants as cited above, and inquired as to how much testing his company has done on their titanium ostomy product in light of this data.

It will be interesting to hear what he says.

I'll post back what he says. And I'm quite happy to forward his email to anyone interested.

And as I said, they hesitate to research further to avoid pulling product. The medical community has worked thay way by design a long long time.

I am interested to find out whether you will receive anything more than general information. Seems like there is a lot of general info available but not much else at this time. I am really excited to hear what you find out and I am hopeful this is close to a reality and not some sort of "concept".

sd1 said...
They sent a reply to my email

"Our technology TIES now has obtained CE mark which allows us to launch the product across EU/EEU countries.
We are currently planning to launch TIES in the UK, Germany, Norway, Sweden. The roll-out is planned in the course of the last quarter 2016. "

So it is very close

Nice!

Deffo will be asking my surgeon about this when I next see her.

Aylesbury. So I can pretty much get to anywhere in the south east if I have to.

I reckon Oxford is the closest place to me most likely to do it. Not sure about my current hospital: unfortunately I saw my surgeon only last week, so I won't be seeing her for another 6 months. Could email I suppose...

Very, very interesting....almost like a BCIR or K-pouch with a much wider opening...but, they had no pictures about how to empty......I saw some comments about knowing when you would need to empty, well, ask someone with a BCIR when they know to empty...it's a feeling they learn to sense.....so, this should be the same way...wow - no wafers, where is the bag? where is the tape border? Also, where is the filter? going to need one with that large of an opening....otherwise, this sure seems interesting!!!

Thanks for the information.

Just bumping this thread in 2021 ...

I came across this product earlier this year, and was initially overjoyed, not because of the "continent ostomy" aspect, but because it does not require adhesive on the skin. (I have sensitive skin and struggled a lot when I had a temp ileo on the way to j-pouch. J-pouch was good but suddenly failed and I was looking to see if anything had changed in ostomy technology.)

But then, like the rest of you, I noticed all the issues.
* The company has never published anything about the initial trials, even though one person (?) has supposedly had the device for 11 years
* There is no information on emptying (that video promised in 2016 to someone in this thread still isn't in existence)
* There are no real photos of the device or of the device in situ, only Photoshop/computer graphic mock-ups
* There is no information on safety i.e. what happens if the person falls unconscious and doesn't empty the bowel
* There is no patient consultation committee, and no consultation or links of any kind with patient groups or ostomy nurse groups
* Only one person on the staff list has anything about ostomies mentioned in their bio
* No background on why the founder of the company wanted to make this product, or how product development has happened
* No explanation as to why the 2016 trial didn't go ahead – apparently it was to happen in 2020 but didn't because of the pandemic

Either they are doing a terrible job of communicating and liasing with patients and medical personnel, or this is a tax dodge. If they aren't liaising with patients, then how are they going to create a successful product? I feel quite angry that my hopes were raised by this.

I am writing to them at the moment pointing all this out as diplomatically as I can, but I don't have much hope.

Also, I looked up the other intersting technology mentioned in this thread, AOS-C2000. It also seems to be dead in the water.
https://clinicaltrials.gov/ct2/show/NCT02602236

If you look in the top right, it says the trial was "terminated". I am not exactly sure what this means.

I also found this journal article from 2019, which seems to indicate the trial went pretty well, and the patients who trialled the device said they would like to use it in future.
https://link.springer.com/article/10.1007/s10151-019-02059-x

This device still involves sticking on a base plate, but I can see it would be handy for times when you don't want to wear a bag, even though that is not my key wish (I want to avoid irritated skin).

Here is an article about the company that came up with the idea, which was then sold to BBraun.
https://www.israel21c.org/startup-product-offers-ostomy-patients-renewed-dignity/

I have written to BBraun to ask what has happened to the product.