TIES Clinical Study Experiences?

Has anyone participated in a TIES clinical study? It seems to be an amazing device.

No, I first read about it in an ostomy journal about 5 years ago. It sounds interesting, and having more options is a good thing in my view.

I did see someone in a UK group a few years ago saying they were having it as part of the UK trial, but I have not seen them post any more since they said that.

I wouldn't want it myself; I can see some big problems with scar tissue if it didn't work out and needed removing, but we get no guarantees with any surgery, so it's not always a bad risk to take.

I had to Google this; I had never heard of it. I really can't see how it would work well for ileostomies, where the bowel is emptying so often throughout the day and night. If it cannot empty when it wants to, i.e., it's backed up behind this 'lid' that you have to open yourself, it would be causing discomfort, wouldn't it? As someone with an ileostomy myself, I can't imagine how often I would have to open the hatch to let stool out, instead of just letting it come as it wants. Maybe there is something I'm not understanding, but it doesn't sound like something I would want to do. It also seems to be a surgical procedure, so what if it doesn't work for you? I think I'd take a hard pass on this one.

Terry

Yes - I was the first UK recipient of the 3D printed titanium matrix with the solid titanium collar - I was implanted by Prof Jayne on 15 May 2019 - and was explanted on 04 Sep 2019.

After 39 months, I am scheduled to have private repair surgery - funded by Ostomycure Group Insurance, having pursued legal advice to ensure this agreement.

Although it did not work for me, I wish TIES the success it deserves - as a concept, it is an early player in the field of continent solutions for certain patients - far less progressed as compared with BCIR, for example.

The product is only available under medical clinical trial - it has not been approved for general use.

To my knowledge, there were 4 implantees in 2019, the last of whom was implanted on the morning of my excision of the device. - The gentleman in question, whose endorsement video was running on the sponsor's marketing site, has been removed. To my own knowledge, there were no patients at the time I was implanted who retained a working implant by using the consumable lids as a continent system - all but one had been explanted - the remaining in-body device was not used as a continent system.

My considered advice to all patients who are considering the TIES option - do not be fobbed off with patient confidentiality - insist on knowing the full facts and request contact with a patient who currently uses the device.

I have a real moral dilemma - for R+D to be enabled, the medtech companies need a patient body for their clinical trial exploration of the product's development/safety. There are inevitably early failures as a product is developed, and the expertise for surgical management of the process also develops.

Personally, I am supportive of open trials where information is available for the researcher/patient.

The difficulty comes where there is no independent information and reliable independent data which may be freely accessed.

To that end, it is my intention to publish timeline photos without commentary - i.e., only displaying what is/has been.

I wish everyone a lovely day - focus on the now, prepare for the future, and be alive, connected - fully - in your present moment - for this is what is.

Best wishes to all - as I am not a premium member, I am unable to directly email those who seek further information ... but I believe if you do send me an email from the site, I am able to respond to that email.

When the first Brooks Ileostomy was made, the dear lady spent her life with serious ulceration - and went on to found one of the leading patient resources that ostomists can turn to.

Thanks for inquiring - be wise, be cautious, but always remain open to possibilities - but ask all the questions - never make assumptions - insist upon in-depth answers.

Jayne

T

Further, the clinical trial is a closed study, i.e., there is not a transparency of information.

This was talked about in detail here on various occasions. So if you search, you should find lots of good info and comments.

;O)

bob

How to Stay Hydrated with an Ostomy with Collin | Hollister

Reply to Bob

How does one now search on this site for relevant, subject-specific information now that the search facility that used to be on the top right of the screen has gone?

Many members are not premium members and do not know how to access such historically posted information that is subject-specific?

It would appear that only premium members have access to premium content?

Any hints for many visiting members who may wish to search this site on a specific basis would be really helpful.

Thanks, Bob.

For those wishing to access info on TIES, there is some info on my profile with a URL link to info on this site - hope this may help?

Wishing all a great day

Jayne