J-pouch to kock-pouch in Germany

Hi Mamabar,
Welcome to the site...Yes, this can happen to the vavle, especially if you are over-full...you may need to intubate (put the tube in to empty out the pouch) more often than 3 times a day....try 5 for now (when you wake up, after breakfast, after lunch, after dinner and before bedtime) that way there is less pressure on your valve...it may not be slipped but just tight (slipped means that the stitching or staples let go and the valve has undone a bit, moved or twisted or that part of it has pulled away...To fix a slip surgery is needed)...the best exam for a valve exam is an opacification...it means that the radiologist injects Opac, a liquid that shows up on x-rays, slowly into the valve and pouch while taking x-rays...to see how the valve and pouch are developing (normaly, twisted, slipped...)...once the radiologist has finished injecting the product he can make you stand up or lay on your side to take more pictures just to see how it sits or hangs inside your body...it is sometimes very difficult to see the problem any other way and even this way it is not always clear.
They need to check for hernias (a small tear in the abdominal wall that can also cause pouch/valve problems but that can be easily fixed)...
Please do not hesitate to ask more questions...if you need help, I am in France and have a good doctor who understands the k pouch problems too.
Sharon

Hi sharon,
thank you for your answer. You've already helped me a lot. I will intubate five times a day now. I hope that my problem does not occur again.

Greetings from Germany,

Mamabär

When I had valve issues at first (now it is rare) I would just keep a catheter in for a week. Either hooked up to a leg bag to drain or plugged the end with a catheter plug (2 bucks on amazon). I'd tape the catheter in with a few kotex pads on top since it gets messy (not stool just liquid).

Hello,
it's happened again. I can not intubate. My surgeon has not managed to insert the catheter. Now my valve is leaking. Valve-slip! Surgery needed! How long can I wait before surgery? I now use a stoma care. What is the risk if I wait with the surgery? What could happen? I can not turn on the work again. Would like to wait another 5-6 months. What do you think?

greeting,

Mamabär

I had a lot of intubation issues at first then I learned how to intubate with a valve that is on an acute angle most likely due to adhesions pulling it. Relax. The best way is GI or surgeon can put a flex-sig in and can find the path so you know how to put the catheter in. That is the first approach before just giving you surgery if it is just a way to figure out the path.

I figured mine out by boiling a catheter, I can't put straight caths in mine have to be very curved. Once I figured out how to curve mine I had no real issues. I was in and out of the ER with no real help at local hospitals for intubation issues until I did this.

Are you leaking full on stool or just extra mucus?

Hello,

I'm completely leak .... I hope. Otherwise I would have been a big problem. My Kock, deflates 3 ​​to 4 times a day by itself. In between, nothing comes out. What should be the precipitation on the day (ml)? I'm very insecure.
When a valve is leaking ... why it does not run over the whole day? Can it happen again because that the valve completely closes or bends so that nothing comes out?
Who had yet to do so and can tell me?

greetings,

Mamabär

Mamabar,
You may have a pouch torsion (twisted pouch that has it twisted on its side or even upside down into a hernia or it may have fallen off of the wall (slipped down)) which means that as long as it is not full up it doesn't leak but once it starts to fill and gets heavy, it pulls on the valve and pops it open and so it leaks...you need them to do an exam under x-ray so that they can get a definitive answer as to what is wrong with it...if it has fallen, twisted or herniated around it then they can all be fixed through laporoscopy...if the valve has really slipped then it needs 'real' open surgery...Vanessay is right, you need to find the direction to push the tube in..if your pouch is twisted then you may have to push it in to the left (towards your bellybutton) and then either up or downwards...experiment slowly and with caution.
Sharon