the only thing is I'd be very worried about is ending up with short bowel syndrome...

Apparently, my surgeon told me that wasn't a problem. I don't know why cause I've had so many things removed. Thank you for your input Janice!

Rissy,
According to my k pouch surgeon, I would have enough small bowel to redo my k pouch again if needed...I have had over a dozen revision and valve redos including new valves (2xs)...Sometimes the second time around is the right one and maybe this time it will work for you.
Good luck
Sharon

Sharon,
Thank you so much for your input. I really appreciate it. You have been through a lot with the kpouch. Do you mind if I ask you how you dealt with all of the valve surgeries seeing as they are major surgeries with a hard recovery.

You have to be under 2 meters to be at risk for short gut syndrome. Usually people that had their stomachs removed and intestine face issues more. I mean there is a guy at my clinic that has 2 feet left of small intestine and a tumor resides in it that they have to take out more. He's living and doesn't have major short gut issues that he need to be on TPN all the time just yet. Good luck!

Ris,
I dealt with it like everyone else...some days good, some days awful...hope in the morning, depression in the evening....
In other words as long as Dr C said that it could be fixed, could be repaired or that there was hope I was like a young and naive soldier going off to war thinking only of the glory...then the realities hit...I was strong when it came to pain, post op and yuck and guts...I was less courageous when it came to slipped stitches, popped hernias, sunk valves, split skin and suture lines, occlusions, infections and all of the other post op complications...not to mention the physcial price and cost...but I am a pit bull when it comes to my K pouch...I do not let go! I wanted it 33yrs ago and still want it and fight for it daily....so somewhere along the way I do what has to be done and bite the bullit...always keep the eye on the prize as they say...plus, a really good surgeon and support group helps (you guys here and my very best friend who has lived this hell alongside me)...If there is hope then please go for it if feasible...SGS is not as frequent as you think and there are tons of suppliments...Also your k pouch takes over the role of absorption very quickly and will help a lot in that aspect so do not worry so much about that as about the rest...make sure that you are physically and mentally as strong as possible going in to it and make sure that you baby it...and yourself for the first 3 months coming out of it.
PM me if you need any help
Sharon

Wow.. Sounds like you've been through a lot and know yourself as well as anyone possibly can. I like the term "naïve little soldier." You are the first person I've talked to who really seems to understand the fight to have a k pouch. I did whatever it took also.. I kept saying eye on the prize each time. I'm going to PM you when I have my computer back in a few days. Thanks so much for your support.

Thank you Vanessa for your response. I know I have a lot of intestines left so I'm not too worried about short bowel syndrome. More afraid of the unknown than anything else.

You have enough small intestine to make 2 kock pouches. Maybe you need a different surgeon or maybe the technique is better than it was the last time you had it done. Just make sure you are talking to a surgeon well versed in the Kock Pouch and go from there.

I echo what Sharon has to say. I too have been through an end ileostomy, conversion to a kp, multiple revisions and multiple valve re-dos (lost count..), plus many adhesional lyses and a few surgical hernia repairs. The good and the bad, but Sharon said it well, keep your eye on the prize, have a great surgeon and go for it. I would never consider going back...

john