i have no idea if it is possible.  but wished to say that i am so sorry you are going through all of these problems.

recently i had k pouch at cleveland clinic.  they used 80 cm.  i previously had a j pouch, which takes up about 30 cm, and they were ok with constructing the k with what was remaining, but 30 is less than 50.

i'm curious--so long as you don't mind sharing the info--where your surgery was done.

nice kitty!  good luck, janet

Hi 

I am so sorry that you are suffering like this...not fair at all.

Yes, they only use about 50cms to make a pouch and valve and yes, given time it will stretch and actually can help make your life bearable...

When Dr C did all of my redo's he told me that I shouldn't worry, that I had more than enough left for another pouch and if need be he could even put it on the left side for comfort reasons. (like if the intestine could not be stretched to the right side or if my abdominal wall was too torn up to be used on the right side...)

You know me well enough to know that I would go for it and the chance for any improvement in my quality of life...you have to be the judge and you must pick a surgeon that you trust.

It is a hard surgery but you have been through it before so you know and understand the risks.

May God be on your side for this one.

Good luck

Sharon

Have you seen a dietician lately? You need to be seen (although I do agree that you probably know your body better than most ) and get some ideas of what you can and cannot eat to help slow you down. 

Our whole mindset with the k pouch is to keep things thin and flowing but now you need to be eating to slow thing down and bulk them up...or you are going to start to have other problems.

Can you eat whole grain bread? It is an incredible bulker-upper...most whole grains are and although you may not derive much nutrition from it due to the quick exit it may slow you down sufficiently to absorb whatever else you are eating with it...(bran was amazing as a bulking agent too)...go to your local health food store...and ask about certain algee that they sell for people who want to lose weight...it bulks up in their stomach and slows down the digestion...(it is also full of trace minerals)...

You have the double whammy of a high-speed output and low absorption so any and all tricks are helpful...

Are you taking supplements? Liquids and chewables are your friend right now and do not forget to chop up or crush any meds that you are on...

Hang in there...I know how hard this must be on you.

Sharon

Josh, I had to do a bit of research, but it does appear that you have enough small bowel left that you may be able to come off TPN at some point. I read that the minimum is about 4 feet, and you have about 7 feet. It can take a couple of years for the small bowel to adapt to its shorter length, and that is the reason for the TPN support now. This is a link to a pretty good article about dietary adjustments you can make to maximize the adaptation. http://www.todaysdietitian.com...es/jan2007pg40.shtml

But your real question is about a future k-pouch, right? You may have enough small bowel left for a k-pouch. I really don't know for sure. But the real question is whether or not there is a surgeon who feels it is a reasonable risk in the long run. Certainly, no one wants to contribute to you possibly losing even more small bowel, leading to a life threatening situation. I forget where you live, but I am sure that you already know that you need to get a few opinions from very experienced k-pouch surgeons. Regardless, they probably would want to wait until your gut has fully adapted to its new length before making more changes.

I am so happy that at least you got rid of the problem pouch. I hope that you can get off the TPN sooner rather than later. Let us know what you find out from your queries.

Jan

Jan,

When I asked Dr C the same question about redoing a k pouch and short gut if the pouch failed and had to be removed...he asked me why it 'had to be removed'?...I was blown away.

He said that even if the pouch (meaning k pouch valve) had failed there was generally no reason to remove the pouch...you just add a bag and flange and treat it like a regular end ileo...leaving the pouch in for extra digestive help...

As long as it is not the pouch itself that is the problem (and that is very rare) it is possible...

But as you said you need to first find a doctor willing to do the surgery and with enough experience that you litterally trust him with your life.

You may wish to (not sure if he is better or not than the N.Y surgeons but...) contact Dr Cohen from Mt Sinai in Toronto...he is one of the last few original surgeons...he has an IBD center there any maybe they can answer you or direct you.

Sharon

TPN  sounds like a terrible process to go through. I really don't know much about it and I'm curious if you also eat or if you can only be fed via the central line.  I'm so sorry you have to go through this process of regaining strength. Can you exercise,  or don't you have the energy to do so at this time. Keep at it!  Janet

Josh, 

My heart breaks for you. I am so sorry that you are suffering...especially since it was not necessary...this is a horrible situation for you.

Can you get out of the house? Do you have the energy? Like Janet asked, can you go for walks? Just around the block to get some fresh air.

I know that that was the first thing I craved once I started to feel a bit stronger...walks.

For now, just heal. Get strong and heal and then you can think about alternatives to your present situation.

Supid question time: Can they transplant a length of small bowel into you? Just enough to create a pouch? I don't know if they are doing it yet or if you make a good candidate but heck, it is worth asking the question.

Lots of cyber hugs from here.

Sharon

They don't do small bowel transplants unless you cannot tolerate TPN and it beomes a life-saving endeavor. Plus, very unlikely they would transplant only a small section of bowel, since you still have to take the same antirejection meds. Also, it is extremely unlikely they would risk any portion of a graft to a reservoir.

There are bowel lengthening procedures that may be more useful for an attempt to come off TPN.

https://en.m.wikipedia.org/wik...tine_transplantation

Jan

Thanks for the answer Jan, 

I am terribly ignorant about these things...it makes sense though...they would want to do an all or nothing sort of procedure...I also forgot about those darned antirejection meds.

By the way, did I hear something about perparing the body with blood transfusions to make it accept transplants better?

Sharon