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J pouch removal questions

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Posted 10/18/2017 12:04 AM (GMT 0)
I am going to a permanent ileostomy. My surgeon I felt was trying to talk me out of it. But I'd rather die than keep it.

If you've gone through it, did you have any complications?
How long survey, hospital stay and recovery?
Are you happy you had it done?

Anything I should know to make it better?

Thank you in advance.
Posted 10/18/2017 12:32 PM (GMT 0)
the other choice was death.. i don;t regret it.. the first few weeks takes some getting used to... then its a piece of cake,, its been 6 years for me...bag changing becomes a habit..every 6 days for me.. good luck.
Posted 10/18/2017 1:32 PM (GMT 0)
Thanks Robert
Posted 10/18/2017 6:09 PM (GMT 0)
I've had pouchitis since Day-1 too (2014). I wasn't able to keep it under control after a couple of years of antibiotics. I switched to Stelara and it works really well for me. I've been able to get off of antibiotics completely.

Maybe one day i will have to go to an ostomy but I'm trying not to have another surgery. I had my hip replaced in December from Prednisone and i'm doing everything to avoid another surgery.

I've heard it's a big surgery have the j-pouch removed. Maybe just disconnecting and leaving your pouch in for a while to see if you can get the pouchitis under control if it's not connected. That would be a minor surgery but you'd have to go back to a loop ileo (ugh).
Posted 10/19/2017 3:36 PM (GMT 0)

ks1905 said...
I've had pouchitis since Day-1 too (2014). I wasn't able to keep it under control after a couple of years of antibiotics. I switched to Stelara and it works really well for me. I've been able to get off of antibiotics completely.

Maybe one day i will have to go to an ostomy but I'm trying not to have another surgery. I had my hip replaced in December from Prednisone and i'm doing everything to avoid another surgery.

I've heard it's a big surgery have the j-pouch removed. Maybe just disconnecting and leaving your pouch in for a while to see if you can get the pouchitis under control if it's not connected. That would be a minor surgery but you'd have to go back to a loop ileo (ugh).

I think we had a user here named susan53 who disconnected for quite some time due to pouchitis and reconnected with luck. I could be wrong but I do remember her story was something along those lines.
Posted 10/19/2017 4:39 PM (GMT 0)
yes, Entyvio worked for her after they disconnected her pouch. After they reconnected her and the entyvio took over she said that her jpouch worked like before she got pouchitis. Antibiotics stopped working for her too.
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