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Ileoanal anastomosis (J pouch) surgery and PSC


Wed, October 29, 2014 9:50 AM

I was diagnosed w/ UC in 2002 and have been trying to live a normal life since then. I think I have become accustom to the pain, flare-ups, and disappointments that go along with having UC. I was also diagnosed with PSC (Primary Sclerosing Cholangitis) this spring, and haven't had any issues so far. I just had a colonoscopy this week and my doctor suggested that I get the J Pouch surgery. I am just looking to see if anyone else out there with UC and PSC have had the surgery and what your experience has been like.

FPO grizhoops
Joined Oct 29, 2014

Fri, June 26, 2015 11:36 AM

 Reply posted for rich25.

Just wondering if you have had any issues with "Leakage" since your surgery? Thanks so much!

FPO prayingintn
Joined Jun 26, 2015

Tue, February 17, 2015 3:12 PM

 Reply posted for tndadof2.

Yes I have had the 1st of 3 surgeries done. So far so good

FPO grizhoops
Joined Oct 29, 2014

Tue, February 17, 2015 2:16 PM

 Reply posted for grizhoops.

Curious if you had the surgery and if so, are you glad you did?

FPO tndadof2
Joined Feb 17, 2015

Thu, November 06, 2014 9:29 AM

 Reply posted for rich25.

Thanks for the encouraging words rich25. 

FPO grizhoops
Joined Oct 29, 2014

Wed, November 05, 2014 12:07 PM

 Reply posted for grizhoops.

I was diagnosed with UC in my late 20's back in 2002.  I "lived" with it, if you can call it that, for about 8 years before I came to the end of my rope.  I was house-bound, unable to work, taking gobs of every medication under the sun, and I was getting worse.  I was in constant flare up.

I was initially worried about the jpouch surgery because I didn't want something to happen and then be stuck with an external bag for the rest of my life, but at the same time I knew that I could no longer live like that.  So, in 2011 I had three major surgeries (the last one was because the doctor had made an error on the first surgery).  Within a week of surgery (I had a temporary bag) I was traveling 4 hours to the beach, visiting friends and relatives that I hadn't seen in years, and enjoying life again.  After the second surgery to re-connect me, I was a little nervous.  Eight years of rushing to a bathroom is psychologically tough to put behind you.  But, eventually you adjust and it fades away to an old memory. 

I'm now able to do anything I want.  I am in the bathroom maybe 3-5 times a day depending on what I eat, but I have no limitations as far as I'm concerned.  The surgeries themselves were tough, and it's a good week in the hospital, but for me it was completely worth it! 

Looking back now, I wish I had done the surgery years earlier.  It's a big step, and it's not for everyone, but it was the correct choice for me!! 

Good luck with your decision.  Hope that helped.

FPO rich25
Joined Nov 5, 2014

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