Last week the tube pulled out sufficiently during the night to not be able to go back in. I decided not to panic and slowly went back to it over a period of 6 hours.
I finally managed to get a Folley Cath in and then went for the wire.
Harder than it looked in emerg.
It took them all of 10 seconds to thread in the wire, it took me 2 hours.
So, I was hooked up for the weekend and terrified to take out the tube, even for a shower, and of course, hating it. (what else is new?)
Then on New Year's eve I deciede to try something new.
If the wire is what allows me to get the tube in, maybe the wire is enough to keep the valve strait??? (this is not just any wire but an arteralgram wire supplied to me by the hospital the last time that I was in emerge)
It tried to get the wire in on the 31st for a while and then gave up ( fear of crazy emergency wards will do that to you) and then on the 1st I managed to pull out the tube and place the wire strategicallaly in it so that I could pull the tube and leave the wire in place.
I cut the wire down to a manageable length and taped it to my skin.
Well, it works. I have been able to intubate normally with the wire in place, slipping the tube in beside the wire and not over it like the hospital did (very messy when you do it that way).
Dr.C is in permanent contact with me over this and keeps checking up to make sure that everything is ok.
Having quite a bit of back pain and some pouch discomfort and occasional "pinching" or *****ing feelings. ( over eating and over doing it on the 31st?) or a reaction to the wire? I occasionallly pull or push the wire in or out some to relieve the pain.
My fears at the moment are that the wire will go right through the pouch and not just curl up nicely inside of it or pierce something or scratch it.
I am closely monitoring the situation but not keeping a log.
I think that if I could get some sort of sillicon wire, no more than 2 millimeters in diam, and about 10-15 inches long with a reasonable rigidity I could substitute it for the wire and eventually wear it permanently if need be.
The trick is to keep the vavle from twisting up or curling left and a path open for the tube to make it through.
I am open for suggestions.
Thanks
Sharon

Sharon,

I was having a similar problem getting the tube in once and I (now this may seem ghastly) used a straightened coat hanger inside the catherer to make it rigid allowing me to "steer" it and straight out my valve. It worked great -I would insert the wire into the catheter so that the end of the wire is just inside the end of the cather. I keep a good grip on catheter to prevent the hanger wire from slipping in deeper and poking the inside of the valve. Once catheter has "popped" through the valve I would simply pull the wire out and go about my business. Word of caution: when pulling the wire out be careful what you are aiming the cath at.
Having proved the theory I am looking online for a piece of smooth (and rust free ) plastic rod slightly smaller in diameter than the inside diameter of the tube.

Another trick that works for me when my valve (I envision a kinked tube) gets bent is to twist the catherer back and forth when I hit a dead end and allow the tip of the catherer to bend over slightly. I pull back slightly and that combined with the twisting action lets the tube straighten out the valve. I am using a soft catheter.

Good luck!
Peter

Hey peter, chris did all the same when his valve was vinked.
try a pet store, aquarium section for a thin rigid tube(plastic rod), i found what i needed in a 3 ft length and cut it, chris stores his cath in it to keep it straight, they come in many diameters

Good idea Holly,
Peter, no I do not cringe at the coat hanger, have already tried it!
Didn't work!
Anyway, I have made a few discoveries this week. The wire, alone, unsheathed, cuts the stoma and pouch like butter! Hell, pure hell.
I found an old silicon tube about 7 inches long and 1/2mm diameter and covered the wire with it.( just barely sticks out of the stoma, way too short, but...) Relief ! no more slicing of the valve or stoma! The kink came back but I could navigate it with the wire and silicon cover in place...without it, I shutter to think!
Then, yesterday, during a rather difficult intubation, I lost the silicon cover! Inside of me.
I was more upset at the slicing feeling starting up again and the pain from the wire poking me coming back...a dentist friend came to the rescue and brought me over a couple of soft plastic hollow laces 15inches long each, that were perfect, so I melted closed one end and carefully pulled out the wire and covered it...instant relief!
Of course the silicon cover came out last night! I never doubted it!
So now I have a very pretty turquoise covered wire taped to my abdomen...it does the trick but I don't know if it is going to be a permanent situation or not.
Ultrasound is scheduled for the 23 but I really think that I need a scope.
Let's see what they see!
Sharon

Sticking a coat hanger into your pouch is dangerous. You could easily puncture the pouch.

The best cath is the Medena 30. It was designed by the inventor of the Kock pouch - Dr. Nils Kock of Sweden. It is not a soft cath. Plus it has a hole in the end and that tends to let gas out when intubating.

Some of us store our caths in the fridge. Then it is a bit rigid. Use lots of K-Y or Surgilube
and go in slowly. If you meet resistance, stop and rotate the tube a bit, and continue slowly.

Also, don't let too much gas build up between intubations. It's better to intubate a bit more often if you are having problems getting the cath in.

Anyone who sticks a coat hanger into their pouch - whether inside the cath or not...is just plain reckless. You could punture the pouch or valve!

I challenge you to call any pouch doctor in the country and ask him/her if it is okay to stick a coat hanger into the pouch.

I have had a K-pouch for 31 years and I have learned at least a few things along the way.

The only thing I will add to this post is:

My first Kock I used the Medena and loved it. With this one, my second, I have tried several different times to use the Medena and it just won't work for me. So I am sticking with the Marlen on a regular basis. I can also use the Waters if I need to.

The best catheter for the Kock is the catheter that works best for you. Plain and simple

Any cath that works best for you is fine. But putting coat hanger into the cath or pouch -- That is just plain stupid.

I imagine that when faced with a situation that feels desperate, one does whatever they think is necessary at that moment. However, I have to admit, that every time I read a post referring to using the wire, I absolutely CRINGE because it does seem (at least to someone who never has done it) SO easily potentially disastrous.

Thanks for all of the input, and by the way, it was one of my sergeons who unbent the coat hanger for me and showed me how to use it!!
Not to be tried twice!
This other wire is meant to be used for arterograms (don't know the name in english) but really does slice through the tissue when left in! The plastic coating makes all of the differece in the world...no more pain of inflamation...I am up for anyone who has thoughts on other tubes, maybe stiffer or with a bullet tip of anything that can navigate this kink.
2 rough days of trying to get the tube in, but at least the wire keeps the path open and allows me to succeed in the end.
won't give up or in!
Yes, I was a medina girl for 28 years, usually curved, now I have a stock of curved that I can barely use...looking for alternate solutions. An Old, stiff medina that I had forgotten to throw out did the trick twice, so obviously I need the resistance for it to work...softer tubes buckle at the holes.
As usual, am up for input...
thanks guys
sharon

Make your own curved catheter. Put a regular catheter in a plastic sandwich bag for two or three days.[Force it into a curve] When you take it out it will still have enough of a curve to be effective.
Hope this helps.
Larry

Sharon
Hi. Let me know if you need anythhing
Chris

Thanks Chris,
Any caths that you think would help navigate the curve...thicker silicon or firmer ends....also any type of 'protected' wire or wire covering...went to a hardware store with my husband and crused the wire section! what a way to spend a Sat.!
Holly has been great about this too...She sent me a carepackage to Toronto while I was still there full of Caths of various sizes and shpes...God bless here...she is heaven sent...I am really up for any caths that you can imagine will work or wires that will not pierce right through me...I am trying to set up an apt for a scope with contrast drip to see why my stoma is twisting...maybe I can give Dr. C some concrete infor and images to help to diagnose this problem..
I am still hanging in and refuse to give up hope...A plugged tube is so much better than a tube with a bag...and a wire is so much better than the plugged tube and belt....at least things are looking up!
Ho w do I navigate airport suecurity with a wire sticking out of me????????????They will think that I am a walking explosive device! and shoot me on sight! If I add a swatch watch that goes tic tic tic I am doomed!
Sharon

Hey Sharon,
I know you have tried all the above and I am pretty sure I sent a faceplate and belt, if not let me know what you have. I had ordered a 34 fr for Chris at one point and it was sooooooooooooooooo huge i returnded it.I will go through the supply closet later and get another care package together. I will also call Fran at Dr Shore's and ask if she has any other suggestions.
Later

Thanks Holly,
Am blocked again and trying hard not to panic..it is 11pm here and I can only hope that I will be able to get the tube in strait...It has been slightly painful tonight so maybe something has shifted...looking desperately for a solution to this ...found out today that I have probably lost my job too...not good...I will try puting in the stiff old curved tube that I have, it may help...
will be alone all day and tomorrow night, my hubby will be in the hospital overnight for a sleep apnea test..so I will have all of the time in the world to fiddle with tubes.
As for the list, I have the curved medena, the standard (I think that it is a 30) that I have been using for years but find the curve is not necessisarily helpful now.
I need stiffer and straiter tubes of various thicknesses.
I have 2 face plates and lots of belts too.
I just need a tube to be able to go through and preferably something for the wire or to replace it.
The tube manages to put enough pressure on the valve to let out some gas but can't navigate the kink all the way.
Helpless here in Paris
Sharon