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Remember that titanium cup for colectomy?

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Crohn's Disease
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Posted 3/1/2017 3:54 PM (GMT 0)
A while back there was a posting about an internal tin cup like device as a colectomy replacement. Anyone remember what it was called? My google search has come up empty.
Posted 3/1/2017 5:48 PM (GMT 0)
Is this what you're thinking of, ub?

www.ostomycure.com
Posted 3/1/2017 8:56 PM (GMT 0)
The website looks updated since the last time I saw it like they are doing this outside of trials now.

Since this is only done in Norway, Sweden, and CR right now I wonder how hard it would be to get the on going supplies needed from another country?
Posted 3/1/2017 9:03 PM (GMT 0)
Yes!! Thank you!! U in NCOT? Maybe we could get a group discount!!

I've sent an email asking just that. Also asked GI to look into it for me.

Post Edited (U B Tough) : 3/1/2017 2:33:22 PM (GMT-7)

Posted 3/2/2017 1:46 AM (GMT 0)
I'm definitely in!

By sheer coincidence I just happen to have an appointment with my surgeon next week. I'm going to ask her about this new implant of course.
Posted 3/2/2017 7:40 PM (GMT 0)
NCOT---here is the response I got from the company. Curious as to why a colostomy patient couldn't use this. With my fistulas I don't know what I'd need. I'd hope for an ileostomy just so I could use this....
Also unsure if "launching" this means they have patients ready for the implant.


Thank you for your interest in the TIES System. TIES is intended for Ileostomy patients. It is not intended for colostomies.

We are currently planning to launch TIES in the UK, Germany, Norway, Sweden. TIES is not approved for sale in the USA. We are planning to submit TIES for FDA approval in the near future but it is going to take at least 24-36 months. We are planning to look for approval in Canada too in the future..

Please find attached an article that gives more information on TIES. Please also visit our website www.ostomycure.com. We shall post regularly news, articles and product information.
Regarding your questions:
1. TIES has received the CE mark which means it has successfully met the regulatory safety requirement regarding class IIb medical devices including clinical testing in human beings.
2. We are developing a special lid with a hatch that clips onto the device’s external part without touching the skin. A clip-on plate that also des not touch the skin allows the fixation of a conventional single use bag for thedrainage of the waste. After drainage, the plate is removed (and can be re-used). The hatch iscleaned and closed until the next time for drainage. It can also be worn during the night if so wished.
3. The concept is all about providing a continent ileostomy that eliminates the need of conventional skin glued bags.
4. There is no cramping or discomfort. When it is time to drain the waste, the patient "feels” it, similarly when one still has a physiological digestive system (colon, rectum).
5. In the first 6 weeks the patient needs to wear the bag as usual to allow the tissue tu grow into the titanium device. After that time the lid can be used. The number of times the patient needs to go to the toilet diminishes over time when the intestine above the device tends to enlarge slowly to create a natural “pouch”. But the number of times depends largely on the length of the reamaining intestine, the diet and the amount of food ingested.
6. There is no erosion or excavation since the patients are not in a inflammatory situation. In UC and Crohn, once the inflammatory part has been removed and an ileostomy put in place, there should not be any inflammation.
Posted 3/2/2017 11:10 PM (GMT 0)
UB - Thanks for posting that!

Whether you have a colostomy or ileostomy depends on how much of your colon is removed. A colostomy is made from the colon, so if only a part of your colon - or just your rectum - is removed, chances are you would have a colostomy. If the whole colon was taken out, then you'd have an ileostomy, which is made from the ileum. People with UC invariably have their whole colons taken out, but with Crohn's sometimes only a part of the colon is removed - it depends on where their disease is located. Do you have pancolitis or is your disease confined to your rectum/left-sided colon?

As for why TIES isn't suitable for colostomies, I would guess that's because the implants would need to be much bigger. They would also have to be able to deal with much more solid stool. It does say this on the website: Future versions will potentially be available for colostomy patients. So I reckon in time there will be a version that's available for colostomates.

One last point about colostomies and that is there is an irrigation method which gives the colostomates who practise it some control over when to empty their bowels - ileostomates have zero control.

If TIES goes well in Europe, I will be hoping that the USA and Canada follow suit as soon as possible.
Posted 3/2/2017 11:26 PM (GMT 0)
The #6 answer seems a little concerning to me. If someone has UC or maybe even Crohn's Colitis than the answer they provide makes sense. However Crohn's inflammation can return anywhere and is one reason Crohn's patients aren't candidates for Jpouch. This seems to me it could have possible complications for a Crohn's patient if any disease presents in the Small Intestine. Especially since the intestines is expected to expand to hold output. I wonder if there may be a complication similar to pouchitis with this procedure.
Posted 3/2/2017 11:48 PM (GMT 0)
NCOT-- I thought it was the opposite. To confirm: ileo is the entire colon removed. Colectomy is partial. Right?

I've emailed back believe it or not asking if it was possible to fly there to get implant rather than wait the 3-5 years (cuz it always takes longer!) here. Obviously, I don't want to be the first human guinea pig but I'd be willing to do it sooner. Obviously I'm getting desperate.
Posted 3/3/2017 12:00 AM (GMT 0)
You are confusing terminology. A person either has a colostomy or ileostomy. A colectomy is the procedure.

A partial colectomy results in a colostomy

A total colectomy results in an ileostomy
Posted 3/3/2017 12:28 AM (GMT 0)

cupcakespinkgal said...
The #6 answer seems a little concerning to me. If someone has UC or maybe even Crohn's Colitis than the answer they provide makes sense. However Crohn's inflammation can return anywhere and is one reason Crohn's patients aren't candidates for Jpouch. This seems to me it could have possible complications for a Crohn's patient if any disease presents in the Small Intestine. Especially since the intestines is expected to expand to hold output. I wonder if there may be a complication similar to pouchitis with this procedure.

I must admit, I wondered about that too. On the other hand if you have a conventional ileostomy then the Crohn's can still return - either way you can't win with this disease. It's an interesting point though and one I would quite like to ask the company about.

U B Tough said...
NCOT-- I thought it was the opposite. To confirm: ileo is the entire colon removed. Colectomy is partial. Right?

Yeah, cupcakespinkgal has explained it. A colectomy is the surgical procedure by which the colon is removed - a total colectomy is where the whole colon is removed; a subtotal colectomy is where some of the colon is removed.

An ileostomy or colostomy is the stoma. If your entire colon is removed you will always have an ileostomy. There's a few differences between an ileostomy and a colostomy. An ileo will have more frequent, liquidy output. It's also usually sited on the right side of the abdomen. A colostomy will have firmer output and is usually sited on the left side of the abdomen - the closer to the rectum the colostomy is formed from, the more solid and like 'normal' stool the output will be. That's 'cos the colon's role is to absorb water from the stool - with no colon, you can never have solid stools. But if you still have most of your colon left, then you can.
Posted 3/3/2017 12:44 AM (GMT 0)

cupcakespinkgal said...
The #6 answer seems a little concerning to me. If someone has UC or maybe even Crohn's Colitis than the answer they provide makes sense. However Crohn's inflammation can return anywhere and is one reason Crohn's patients aren't candidates for Jpouch. This seems to me it could have possible complications for a Crohn's patient if any disease presents in the Small Intestine. Especially since the intestines is expected to expand to hold output. I wonder if there may be a complication similar to pouchitis with this procedure.

Great point ! Expanding the bowel like that . No good.
Posted 3/3/2017 12:55 AM (GMT 0)
Okay, I've emailed OstomyCure asking what would happen if the Crohn's come back once the TIES implant has been installed.
Posted 3/3/2017 12:56 AM (GMT 0)
Thanks everyone! I'll also ask about #6. I meet with my surgeon on the 10th so I want to have as many questions already answered. I'm assuming very few surgeons will be able to do the procedure, hence wanting to travel to the U.K. Or Oslo. Guess I'll start playing the lottosmile
Posted 3/3/2017 12:59 AM (GMT 0)
If you travel to the UK, UB, we can meet up for a coffee if you like <_<.

I would be willing to travel to Oslo, although with us on the brink of leaving Europe I suppose I would have to pay for the procedure, which would certainly be unaffordable for me. In fact if Brexit in any way hinders this operation from coming over to the UK, I shall go even more nuts than I already am.
Posted 3/3/2017 1:18 PM (GMT 0)
Thanks NCOT! It's a date!

i heard back from my new doctor friend from TIES. He explained that Canada accepts the European approval of CE designation. The US has the FDA which requires that the clinical pathway be redone there. The doctor said that after the product launches in Europe they will approach Canada "in the course of this year."

He also said there is a risk of recurring fisutlas with an ileo and TIES. It's not certain but a risk.

As far as I know I have perianal disease. My last colonoscopy (apr '16) showed mild disease in lower sigmoid and rectum.....then in Aug all hell broke loose with these darn fistulas

Still very confused by terminology---if I had a total colectomy would I be able to qualify for TIES? He said it is suitable for ileo patients not colectomy.

I never thought of your financial struggles with Brexit! Oh my. So many people must be feeling medical vulnerability. Is this affecting you now?

I know that I could petition Canada to get the procedure covered in Europe if I can prove that I'm in dire need and have exhausted all my options here. (check!). That would be the only way I could fly over....or do crowd funding...but I'm very private, don't do that social media thing so it's not for me. I'm really struggling....now with severe joint pain from humira suddenly this week. In bed for 3 days.
Posted 3/3/2017 2:33 PM (GMT 0)
Still waiting for an answer... >.>

He also said there is a risk of recurring fisutlas with an ileo and TIES. It's not certain but a risk.

:-(



Still very confused by terminology---if I had a total colectomy would I be able to qualify for TIES? He said it is suitable for ileo patients not colectomy.

It is quite confusing at first, tbh. My suggestion would be to google images of colectomy, ileostomy and colectomy because looking at the actual anatomy makes it much clearer in my experience.

If you had a total colectomy you'd be eligible for TIES, yes. I think you're still confusing colectomy with colostomy. They're two different things. Colectomy is the surgical removal of all or part of the colon: /www.cancercouncil.com.au/wp-content/uploads/2013/05/Bowel_2.png

And colostomy is where the end of the colon is brought out through an opening made in the abdominal wall and then sutured to the stomach to make a new outlet for waste (hence the need to wear bags): www.medindia.net/surgicalprocedures/images/end-colostomy.jpg

An ileostomy is exactly the same a colostomy except it's the end of the ileum, not the colon, which is brought out through a hole in the stomach.


I never thought of your financial struggles with Brexit! Oh my. So many people must be feeling medical vulnerability. Is this affecting you now?

Not yet, but I'm worried every day. I know it's pointless worrying about things which haven't happened yet, but to me the signs don't look good and I'm in a vulnerable position in more ways than one. I'm hoping the NHS will survive the long-term fallout of Brexit, but we have a PM who would sell her own grandmother to stay in power - I doubt she would be above selling off parts of the NHS to her rich chums in exchange for lucrative trade deals. The Tories aren't called The Nasty Party for no reason.

In the meantime, though, my benefits will probably get slashed to nothing before the NHS collapses from lack of funding and terrible policy decisions.


I know that I could petition Canada to get the procedure covered in Europe if I can prove that I'm in dire need and have exhausted all my options here. (check!).

Ah okay. If worse comes to the worse, it sounds like Canada will get TIES before America does at any rate.
Posted 8/27/2021 11:43 PM (GMT 0)

U B Tough said...
NCOT---here is the response I got from the company. Curious as to why a colostomy patient couldn't use this. With my fistulas I don't know what I'd need. I'd hope for an ileostomy just so I could use this....
Also unsure if "launching" this means they have patients ready for the implant.


Thank you for your interest in the TIES System. TIES is intended for Ileostomy patients. It is not intended for colostomies.
...
2. We are developing a special lid with a hatch that clips onto the device’s external part without touching the skin. A clip-on plate that also des not touch the skin allows the fixation of a conventional single use bag for thedrainage of the waste. After drainage, the plate is removed (and can be re-used). The hatch is cleaned and closed until the next time for drainage. It can also be worn during the night if so wished.

I realise this is an old post, but I too have been "sucked in" by the idea of this device because I had a lot of skin irritation when I had a temp ileo (now need a perm one).

It seems strange to me that they are emailing out info on how to empty but the website still doesn't have even this basic info on it. I am still confused as to jow this would work. For instance, how would you clean the hatch? Wet wipes? And I can't work out if the "hatch" they are referring to is the cap on the stoma implant or something else on the emptying bag.

I have had contact on another forum with a chap in the UK who is getting one of these fitted whenever elective surgery can resume. He was scheduled to get it before the pandemic in early 2020 but it was postponed. I hope they aren't putting these into people without having the emptying situation pinned down. Like another commenter, I can imagine a small fountain erupting.
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