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Hi Guys,

It has been a while since I've posted.

I was having a lot of complications in recent years, my liver seemed to be in pain, enlarged and generally unhappy. I was having frequent (after meals or when fasting) severe upper abdominal pain where my gallbladder used to be, sometimes sharp as if a staple came loose and was scratching me from the inside, a punch-in-the-gut pain...all in the same zone.

I was also getting intermittent partial blockages on my left where my colostomy site was and where they had already fixed a loop of bowel stuck with adhesions.

Plus I was no longer intubating straight in...I was searching, a little too often, for the trajectory.

To crown it all, if I had to pee, I had to empty my pouch, partially, first, then pee a bit, then empty a bit...etc. It was very frustrating (it also meant that I had to intubate every single time that I had to pee.)

I was being followed by a hepatologist who found a cyst near my liver and stones in the 'colléoduc' or stump of the gallbladder that was obviously part of the problem.

After consulting with a 'specialist' I went to see my favorite surgeon (funny how we can say that and you guys understand!) who has fixed various things laparoscopically at least 4xs and has once assisted Dr. Cohen in completely rebuilding my pouch and valve.

I didn't need to explain much to him, he is pretty good at this, in spite of the fact that he is in his late 70's. (Fear that he is going to retire soon is real!)

So, on Tuesday he took me in and operated on 4 different sites.

He removed the cyst (impressive little golf ball), cleared and clipped-off the colléoduct, found adhesions gluing my small bowel to my liver...apparently, that was quite a job to separate). He released the loop of bowel on the left that historically gives me blockages, then he had to shift my position to seated (he asked me in what position I intubate beforehand) and go in from another angle. He picked up my pouch that was sitting on my bladder (no adhesions, thank goodness) and tacked it to the wall.

All in all 2.5hrs 'knife-to-skin' as my anesthesiologist says. I had a hard time coming out of the anesthesia but honestly, I am doing great. Home in 2 days.

I can make myself soup, put on my own socks and I unhooked from the leg-bag within 24hrs.

I love laparoscopic surgery! What a difference from open surgery.

The good news is that he found nothing on my liver itself. (the fear was that a crispy-critter was lurking around there). He believes that the problems were all from the back-up in the colléoduct and the adhesions. We shall see but for now. No complaints.

My surgeon is not a k pouch surgeon, had never even seen one before assisting Dr. Cohen 10+yrs ago, and is old school. He talks. He takes his time and listens. He trusts me and my instincts regarding my pouch. When I said that it was 'off' and that I wanted him to check it out, he didn't poo-poo me...he did it, found the problem, and fixed it.

So, now comes the hard part. Staying home and healing.


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Thanks Jan,

It is only day 5 post-op and I may not be running foot races or jumping rope but I am pretty functional at home...I'm eating a soft diet, no fiber but lots of proteins and soups, my pain level is easily managed with Tylenol and I am sleeping through the surgeon has called me twice just to check in and make sure that everything is doing what it should...I am now intubating easier, no more frustration trying to find which way to direct the catheter and I can pee without intubation! Yea!!!

I am off of work for 2 weeks but will go back via distance-teaching for the 1st week because I have 1.5hrs travel time each way on the subway and walking...I think that it will kill me if I try to do it too soon!

I wanted to say that not all of our problems need to be fixed by a specialized K pouch or BCIR surgeon. We do need a specialist though...someone who has already done J pouches helps (mine does them laparoscopically...I cannot even imagine how!).  A key-hole surgeon is a bonus.

We need a human being who is willing to listen and think outside of the box...Willing to look, understand and learn...then do what needs doing.

I am not talking about rebuilding the valve here...but anything 'outside' of the pouch' is 100% doable...hernia fixes, adhesions, cysts and other problems can be repaired by a Good surgeon...that is trustworthy...

Just saying, for those of us living in fear, we do not have to put off necessary surgery because there is no BCIR/K pouch surgeon within a 500mile radius...we just have to enlist (and share the name please) of someone good.

For now, I am healing and wish all of you good health



I haven't been on the site for a long time. I used to keep updated nightly with everyone's posts using my iPad in bed before falling asleep, but since we no longer have wifi in the house, I have been out of touch!

I'm so sorry to hear what you've been through, but I am encouraged to hear what your WONDERFUL surgeon has done! I'm afraid there aren't many of them who listen to us and believe what we tell them is happening to our bodies. And I too am finding that the "good ones" are retiring. Sigh.

Let us know how you're doing 2 months post-op!


Hi Debbie,

Well, as for the surgery, I think that for the most part, it worked...or within the limits of what he could do.

My liver is still miserable (less meat, fat, cheese, oil etc helps a bit) but I need my hepatologist to take another look.

My pouch is back on the wall and the valve, although not perfect, is straighter.

The loop of bowel that I had problems with is fine now and the changes are amazing.

Ditto for the few adhesions that I had that were causing an all-round success.

Like I said, you need to find someone who you can trust and it needs to be reciprocal...


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