all new problem...maybe

sharon

so sorry to hear about the mishap, well it's more than that.  frightening.  

thanks for the explanation of how you resolved it, just in case any of the rest of us k pouchers need to replicate your technique.  

glad to hear you are back in paris.  hope your vacation went well.  

things are going ok for me.  have you ever increased the size of the catheter holes?

janet

Nice to hear that you are doing well Janet,

I haven't tried it but I have heard of others doing it....I have had to make holes in a normal rectal cath when a k pouch cath was not available to me in the hospital...the danger is that if you do not file down the edges of the holes or use a lighter or boiling water/steam to smooth them out you may risk cutting up the inside of the valve.  Just be very cautious when doing it.

Sharon

Thanks. For now I'll hold off on enlarging the holes. Will experiment w the other end of catheter first  

how's the valve behaving?  Janet

Hi Sharon,

I am so sorry to hear about your experience. I would have went in panic mode as well. Thank goodness for your patience and experience you were able to get it out. I am so glad you are alright. I hope you have a Happy New Year.

As another older pouch owner ..so sorry and yes, it's frightening and you feel so helpless at times.  Can we create medals of honor for people with pouches that are old?  Well, no - no medal of honor - how about a monetary gift or something for our "Pain and suffering" -   That's an attorney's ad for you there. I hope you both have a good new year. 

Being one of the more experienced k pouchers when it comes to complications, redo surgeries and generally unimaginable problems, may I make a suggestion here? 

Can we list all of the complications that we have had and how we have dealt with them (effectively)?

My first biggie on the list would be that if your valve gets stuck, Never, Ever yank!

Twist, turn, bend forward, sideways, plug the tip and lay flat, walk around and relax, roll around on a yoga ball, sneeze (yup, sneeze!), cough, hiccup, giggle...do just about anything to relax and release those muscles...inject warm fluids into the pouch a little at a time (no panic please) to relase any blockages from foods (nuts, fiber hooked onto the edge...). My first pouch fell off of the wall within weeks and 4months later my cath got stuck...needless to say... ER and my intern came running...he tickled me...the tube popped out.

Never, ever yank...you can pull your valve right out of your pouch and do major damage.

Dr C had asked me when I had flown home in 2007 and had a huge problem in the plane (long story)...ended up going from the plane to the ER...if my valve had come out????!!! (had never even heard of that one!).

Well sure enough days later while home, I went to intubate while really over full (darned frozen latté...and the valve pushed right out...just hung there like an end ileo...gushing like a fire hose....(girlfriend's bathroom will never be the same!)...she had the presence of mind to grab my cellphone and snap a couple of shots...sent them strait to Dr C...Who confirmed valve prolapse...

Turned out that my peri-stomal muscle had herniated and was no longer holding the valve snugly tight in there..so it popped out under pressure...

Took a lot of surgeries to finally get it back where it belonged for good (about 5 or 6 including moving the stoma 2xs, hernia surgery both external, internal open and finally laproscopic with mesh...That one did the trick).

With K pouches, less is more...the less you do the better.

Chewwwww your food well, avoid dangerous ones with big chunks (I love walnuts, they hate my valve), Always use lube (I have started using olive or carrot oil...Works great), never put anything dangerous, sharp, with open edges...into your valve.

Avoid putting it under too much pressure unnecessarily...it blocks the valve shut and you need to use too much force to push it open.

More later...please add to this list...

Happy, Happy, Healthy New years to one and all.

Sharon

Two days ago I had something stuck in one of the holes in the tube, 1/2 out and 1/2 in.  Couldn't figure out what it was at the time because it wasn't pliable like food, so just kept moving the tube back and forth (didn't think of adding water-good idea).  Finally after what seemed like a millennium, probably five minutes, a lemon seed came out.  I try to be so careful when adding lemons as I use them all the time, but one little one got away!!!!!!!  Guess I'm going to use cheesecloth when making anything with seeds.

JudithS

did you get to the doctor's office ok and what did the tests indicate?  i've been worried about you!  hope all ok and good results and you can return to k-pouch normal food.  best, janet

just got your report on another post so no need to repeat.