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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Hi All, If you have an " old" or recent ostomy, this is the place for you. I think I've been a member for more than 15 years, but I have had my surgery, since I was a kid of 15 ( do the math-that's more than 60 years ago). As a teen, with a new ostomy ( for Ulcerative colitis) my parents dragged me off to my first ostomy association meeting. I wasn't happy, but in the long run, it's the best thing that happened to me. I met others, older, and teens like me, adjusting to the changes. A group of us started a Young adult group, and helped each other, and even visited kids who were new to the world of ostomies. But soon I married, and moved out of state, and although made some connections with other NJ ostomates, I became pretty much isolated. Until I discovered MaO. By then, I was having a myriad of other medical issues, and my aging stoma " wasn't doing well". I received a lot of help and support from members! I was pleased that I was also back to supporting others. I met a gal on line (from Papua New Guinea) who was trying to help ostomates in her country. There is a scarcity of supplies in some other countries, and unlike the US, insurance to pay for supplies isn't available. When my son followed his "love" twenty years ago, and moved to Australia I took advantage of an opportunity to help other ostomates. On one of my first visits to Oz, I brought a suitcase full of Ostomy supplies, handed them off to an Ostomy assoc. On the Gold Coast, who then had a friend take them to PNG. They were grateful for the help, and Janet and I still write.. This is the place to be, if you need help, and it also gives you the opportunity to provide help and support to others. Feel free to write, if you'd like to chat, about things ostomy, or life in general. Best REgards to all.. Marsha
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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