Hello. I have a end ileostomy, you are right a end is permanent. A loop is temporary. I would not recommend keeping a loop ileostomy permanent, going by my experience: its more leaks, more dehydration, and just not a good quality of life at all and its not healthy to keep a unused j-pouch intact permanently when its not being used.  With an end ileostomy: more hydration, absorb more fluids, and way less leaks. I do not know if my experience will match yours. But I think a end ileostomy is a better quality of life.

Ok thanks, I’ll be seeing my surgeon in a couple of weeks.  I’m very hesitant to go back to the jpouch.

I have an end ileo.

It would be permanent. But I didn't have my rectum removed.

Just sewn from the inside. My surgeon did it that way in case I wanted another J pouch made and hooked up.

Which I don't. And I won't have my rectum removed as it causes no problems. And I do not want more surgery.

It's definitely a permanent ileo if you have the rectum removed and all of it sewn up.

It's an option to discuss with the surgeon.

Most have the rectum removed. As I read here and UOAA site.

Richard.

P. S.

I consider mine permanent.

@AL77 posted:

Ok thanks, I’ll be seeing my surgeon in a couple of weeks.  I’m very hesitant to go back to the jpouch.

Yeah I understand completley, trust me. I think you should do what feels right to you since you are in your body. Please let us know how that appointment goes.

Just please remember that its not healthy to keep a loop ileostomy permanently with a disconnected J-pouch.

Hope everything goes well and please update us

Hi!

I had my J pouch diverted first and had a loop ileo formed. When I went in 3 years later to have my butt sewn/J pouch removed, my surgeon kept the loop. It is a beautiful stoma but I have lots of problems with dehydration, currently have stage 3b kidney disease thanks to my inability to maintain adequate hydration. I would definitely go for the end ileo. I see a local surgeon in 2 weeks so I will get her input then. It is really hard to go back in for surgery when you don’t feel crappy. Best of luck to you!!

Hi Lori,

why didn’t you have your jpouch reconnected?

I kept having problems with perianal fistulas. I am a pharmacist and I lost faith in the drugs. After I developed antibodies to remicade, nothing else seemed to work for me. There are a whole bunch of new medications out there so maybe something would have worked. I was just tired of being a patient and I found it extremely stressful not knowing if/when I would end up with a perianal abscess from the fistulas developing new tracts. I also despised the setons. I know people live with them in for years, but I was not a fan. I was going to work sitting on a butt cushion every day. Those were some crazy times!

Wow, me too. I am dealing with the same problem. I have 3 setons in me since August. My surgeon says I have perianal Crohn’s Disease. My bottom has healed since I was diverted. In a couple of weeks I have to go back to see him, he said he will be doing some kind of minor surgery down there don’t know exactly what, maybe some tissue repair, I don’t think he is removing the setons right now, I have to continue the Infliximab infusions. Down the road I may be able to reconnect to my jpouch but I will think long and hard about it. All that inflammation might come back again and none of the butt burn creams were working to relieve it.

@LORI726 posted:

Hi!

I had my J pouch diverted first and had a loop ileo formed. When I went in 3 years later to have my butt sewn/J pouch removed, my surgeon kept the loop. It is a beautiful stoma but I have lots of problems with dehydration, currently have stage 3b kidney disease thanks to my inability to maintain adequate hydration. I would definitely go for the end ileo. I see a local surgeon in 2 weeks so I will get her input then. It is really hard to go back in for surgery when you don’t feel crappy. Best of luck to you!!

I hope you can let us know what happens in 2 weeks. I hope your story has a good ending. Best of luck