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Accidents with a jpouch. getting worse with age...

Posted by gtm501 @gtm501, Jun 4 9:04pm

Hello everyone!!! I've had a pouch since 2000. many bowel obstructions. 2 surgeries to fix adhesions. Currently have mild to moderate pouchitis, which is my norm. I'm 61 and the last few years, im getting accidents at night. sometime horrific ones. Wearing depends barely contains it... So incredibly tired of it all. Its looking like an ostomy on the horizon. I will be a major surgery for me because of all the scar tissue from all the BO's. Over 100 at this point. I've tried all the new drugs. Skyrizi worked perfectly for a month and a half and then just stopped one day. I know if I get the ostomy, they will cure colitis a year later.... I'm just reaching out for any help or news on a possible fix for UC or my accidents that started for no apparent reason. Thank you everyone.

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Darienne | @piki | Jun 5 10:19am

I had to get a permanent ostomy because of strictly physical problems, but it's not the worst thing in the world..a urethral catheter might just be it for me! (I have a suprapubic catheter now...100 x better.) I had the ostomy at 83 years old so you, being still a spring chicken, ought to have no problem bouncing back. (Good heavens, you are the same age as our youngest!) all best to you @gtm501

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Colleen Young, Connect Director | @colleenyoung | Jun 17 4:42pm

@gtm501, like @piki (I hope you saw her helpful reply to you), I believe @davem @susanf8 had a J-pouch removed and a permanent ostomy. Read more here:
- J-pouch Removal? https://connect.mayoclinic.org/discussion/j-pouch-removal/

I can imagine you're tired of the accidents. I know the prospect of getting a permanent ostomy isn't what you hoped for and surgery risks have to be considered. Have you discussed the surgical risks with the surgeon vs the quality of life benefits? What concerns do you have?

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gtm501 | @gtm501 | Jun 17 5:57pm
In reply to @piki "I had to get a permanent ostomy because of strictly physical problems, but it's not the..." + (show)
Profile picture for Darienne @piki

I had to get a permanent ostomy because of strictly physical problems, but it's not the worst thing in the world..a urethral catheter might just be it for me! (I have a suprapubic catheter now...100 x better.) I had the ostomy at 83 years old so you, being still a spring chicken, ought to have no problem bouncing back. (Good heavens, you are the same age as our youngest!) all best to you @gtm501

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@piki
Thanks for the response! I'm scheduling the Ostomy currently. I just cant do it anymore...

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Mentor
Susan F, Volunteer Mentor | @susanf8 | Jun 17 6:18pm
In reply to @gtm501 "@piki Thanks for the response! I'm scheduling the Ostomy currently. I just cant do it anymore..." + (show)
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@piki
Thanks for the response! I'm scheduling the Ostomy currently. I just cant do it anymore...

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@gtm501 As.Colwen mentioned,.I had my j-pouch excised in 2002. It wasn't what I would have hoped for, but it's been a good couple decades.

I found I had better wear time with a permanent (end) ileostomy.

When do you think your.surgwey will be?

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