I had a continent ileostomy for over 25 years. A continent ileostomy means that an internal "pouch," created from the end portion of your intestine, is constructed with a drainage "hole" (actually a stoma). The pouch is then drained by inserting a catheter through the stoma and into the holding pouch. Over time, the size of this pouch can expand due to the weight of waste matter collected. This increased pouch size can then press on nearby organs and/or on the intestine, creating pain and obstructions. The TIES system sounds like a modification of the continent ileostomy, which is not performed routinely now because of problems with pouch valve collapse (the valve is the opening from the stoma's intestinal channel into the pouch). In the TIES system, there is no explanation of what happens to the waste as it collects behind the TIES lid. Waste material and gas must be backing up in the intestine itself, and there is no description of how this affects the intestine, bloating, etc. Is an intestinal holding pouch created? Or does "stuff" just back up in the intestine like when a blockage starts? That's a scary thought. I would recommend searching for clinical trial results conducted by reputable hospitals/clinics not affiliated with OstomyCure.
There have been a few posts about TIES in the past. I found one post below where someone who has actually had it done replied.
https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=14210
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Jayne from the UK has an interesting profile story too.
https://www.meetanostomate.org/index.php?page=view_profile&user_id=15273
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Well, I hit the two year mark. I went back and read my posts from when I first found this site. I was very fortunate in that I stumbled upon it only 4 weeks post op. I have said many times that this community really saved me. The first 2 weeks after my surgery I shut down completely. It wasn't until about the 3rd week that my son came in to my room, flicked on the light and told me I was going to have to get back to living because I was scaring him. I had fallen into such a depression. He ticked me off, but it also made me stop and think- what was I going to do? Feel sorry for myself and sulk, or be grateful I was alive.
I've re-read my journals from that time and it was after my son kicked my butt, so to speak, I took an honest inventory and had to dig deeper than I've ever had to. I mean, I had survived a pretty nasty divorce, after a pretty crappy marriage and that was tough. But this was different. I felt like I was now a handicapped person who would be limited in their life and be looked at as a freak. My mental state was precarious, at best.
But then I found this site. I just lurked a bit before posting. I read so many of the other stories and I started to see just how full my life can be, I was not handicapped, and certainly not a freak! The stories of survival, the sense of humor, the support and compassion was inspiring. It was then I made myself get out of the dark, and get my sh*t together.
Not all rainbows and sunshine at first, hardly! But with grace from myself - to myself, and the kindness and willingness of the folks here to be supportive, non judgemental and openly share intimate details about their life circumstances, l not only survived but thrived.
I think of all the years I had suffered with such extreme pain, barely functioning, and the many hospital stays and how that is all behind me now. (All fingers, toes, and legs crossed that I never have to go near a hospital for myself ever again. I think I'd rather have a fork stuck in my eye. I loathe every about them.)
So, to everyone who has been a part of this journey with me, to say thank you is not enough. I'm forever grateful to know you all. My Angels, each one of you.
And as the Grateful Dead famously said,
"what a long strange trip it's been!"
Im so happy I'm tripping with you all.
You raise interesting and legitimate points. The TIES insert is placed into the stoma. A titanium ring is placed around the stoma and a plastic lid clips on the ring. The lid has a slider that allows for emptying. Ostomycures has patients who are now using the TIES Implant. I spoke with one of these patients for my article which just appeared in the Phoenix magazine. He had an ileostomy that was converted and has been wearing his implant for 3 years. The TIES patient just told me he, like other ostomates, eats a controlled diet and empties regularly. He is quite happy. This year, clinical tests will begin in several other countries, including the US. I am not aware of independent studies for pharmaceuticals or medical devices in the US. The FDA would have to approve TIES before general use in the US. As an ostomate for 17 years, I greatly appreciate and value your response.
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