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Hi everyone!  I thought I'd check in and see what's going on since I haven't been here for quite awhile.

 

I am still wearing my catheter 24/7.  I can remove it to change it to a new one.  I've still only had 1 dilation done for my stricture and bend.  I'm used to this and I don't have to worry about getting my catheter in, as of today anyway.

 

I made the holes bigger and then used a lighter to smooth the new edges.  Makes it a lot easier to empty.  I don't recommend this, but I went to a Marlen 34Fr also.  I have less irritation in the pouch since it is a softer plastic tube.  I was surprised it went in actually....bigger diameter catheter with bigger holes......priceless!  No more clogs!

 

My own idea, just experimenting. 

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as i am two days away from getting a k pouch i am very interested in your experiences.  will be having it at cleveland clinic, by dr. dietz.  where did you go?

 

sounds ingenious to leave the catheter in.  what the doc think?

 

any suggestions for me pre-op or questions for the doc?  appreciate your comments.

thanks, janet

I am not doing this under a doctor's recommendation.  I thought I would just give it a try and see what happened.  I am experimenting on myself.  I have found so far the 34 Fr 2 hole bullet end Marlen is softer and less stress on the valve and pouch.  It is more pliable and so far hasn't gotten hard as a piece of ceramic like the 30 Fr 2 hole bullet end Marlen did after 3 months in 24/7.  I have a big pouch so I put the whole 15 in. catheter in and it winds up inside.  They put my 30 Fr. Marlen in all the way after interventional radiology had to insert my cather for me because of a stricture and bend.  I couldn't get my catheter in on my own.  I almost went a year with a 30 Fr. Marlen inserted before I attemped on my own to try to see if I could even get a 34 Fr. Marlen in, to my surprise I got it in.  I made the hole bigger and lit a lighter around my new cut holes to smooth them out.  I haven't even told my Doctor I've attemped this yet.  I can eat more things, and when I empty my pouch I just pull it out to the mark I put around the catheter so I know it's past the end of my valve.  I use a syringe to flush my pouch out daily and take probiotics.  So far so good.  I have no idea what the absorbtion of the plastic material of the catheter in doing to my body though, that I am concerned about.  I cap off the end with the cut off end of a 30 Fr Marlen catheter that I have a eye dropper cap pushed into the cut end so it doesn't go in to far.  Then I wrap a piece of gauze around me and tie it under the cather and then around the end of my home made plug end to hold the catheter in place.  I use no tape as I am highly allergic to adhesives.  This is my own research project.  No one gave me this as an idea to try.  My valve doesn't leak, so I'm scared to have a valve revision because I could end up with a leaky valve.  So I'm using myself for research.  I don't think your doctor would let you do this.   

I wouldn't worry too much about absorbing plastics from the catheter, since it is medical grade. The primary worry would be erosion of your stoma from the constant presence of the tube. Still, it seems you are quite on top of this and you pretty much have no other option. I hope this continues to work out for you!

Jan

Jasmin, 

I responded pn Facebook to your post but wanted to add something here.

When my pouch was down and twisted and had to keep the tube indewelling someone (a kind soul from here) suggested that I contact a manufacturer of ileo/k pouch caths for ideas and samples...there was a nice guy who had invented a semi-permanent indwelling tube....it is much larger and shorter than our usual caths...and has a 'bubble'  at the end that you fill with water (using a syringe) that holds it in without any help...it has a closure at the other end that plugs it.

I will try to find out the name of it but I am sure that someone here remembers.

It has a single opening at the end that is rather large so chunky stuff gets through fine.

Maybe this could help you...

Sharon

this is all very helpful to me.  this is my 2nd day of inserting catheter on my own, and am on the far side of the learning curve.  will only get better!!!

so far i've faired down my syringe to better fit into the catheter.  also, have determined that knelling in front of toilet is best for me, but that's not going to be sustainable in public rest rooms.  

sharon--can you send me the message you sent to jasmin?  thanks, janet

When I had to keep my cath indwelling due to a peristomal hernia I found two solutions. One was the abovementioned tube but it did not work the way that it should on me because of the hernia.

The other was to get a colloidial patch (sort of a thick transparent patch (looks like a sheet of those blister bandaids) that helps to heal the skin) about 3x4 inches, cut a slit to halfway in and a keyhole. I would then stick it to my clean, dry skin with the stoma sticking out of the middle. I would then put the tube in and tape it down onto the colloidal patch, that way protecting my skin from the irritaion caused by tape and the horrible mucus that would leak out. 

I used the tip covering that comes with the syringes to plug the tube...it is the perfect size. 

You need to tape it in with some transpor tape to make sure that it doesn't shoot out from the pressure. 

That is what worked best for me....do not forget to keep a clean piece of gauze wraped around the base of the catheter to mop up the ooze.

Sharon

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