Cathetar folded again, No Surgeon or real Support in Oregon for BCIR or K-Pouch.

 Will– – so sorry about your situation and especially the anxiety. I’m not exactly sure what you mean by folded over.  can you explain that a bit more? Also is the bleeding internally? That can happen and  will heal over with time. It took me several months and once or twice I had quite a bit of bleeding. But it’s not out of the normal.  

 i’m sorry you don’t have access to a G.I. Doctor who is knowledgeable about the k pouch. Can you get your regular G.I. to establish communication with the surgeon? Who does your annual scoop?    stay calm  to the best possible. Keep us posted, janet. 

Hi Janet,   what I mean by folded over is when the catheter is inserted and instead of making its way past the valve it must hit something or there is a angle but the end of the cath actually folds and when removed is like a bloody hook (literally) and though care is given it is very hard to get it out without having it cut something inside,  this one I think was minimal and I am letting it heal till I hear from my Surgeon by leaving a catheter inserted with the belt and the end plugged.  I have dealt with this before but it is just sometimes hard when you have unknowns and lack the experts in your area.  My initial Surgeon here in Oregon Passed away many years ago and since that time his replacement which worked with him had some issues and last I checked was not an option.  The one that I would probably be seeing thru Kaiser is able to do a scope but with all due respect has spoken out in a very one sided and unsupportive way about the K-pouch and BCIR.  Years ago when I had first dealt with that individual it put me in tears.  Since then I have just tried to reason with him but it is something that should not be expected for a patient to be scoped by a surgeon that is openly against the very condition you have.  But my objective is very simple > be safe and trust that those in positions like that have your best interest and not what they "feel" is your best interest in mind.   Fortunately I am for the most part pretty intuitive and in touch with how my body works.  But since I have had this BCIR (used to have a K  Pouch for 20 years) a few years ago I have been adjusting and one of those is the intubation.  I am hoping that as this heals and leaving this in for I am guessing this week that it will be back on track.  Thanks for responding.  It is much appreciated.

Sincerely, Will

Hi Will,

Though I have just passed a year into the K World, I have noticed the new catheters seems to be weaker, easily bendable, eek.

Just had a yearly with my Kpouch surgeon and he told me a little bleeding is to be expected, use lots of lube and care.Things are tough in there and heal up quick.  I usually lie down , put in more lube to get out a stuck tube. Of course I’m always worried 😧. That’s me🤷‍♀️

We are a small number and can only hope and pray that they pass down this surgical art to other physicians 🙏🏻

Good luck to you and if you need to see a K pouch Dr , we have Dr Dietz here in CLE , be glad to do what I can for you here!

Jan

Thx Jan,  I hope by tomorrow my Surgeon calls me.  I have seen the changes in catheters over the years (had my first K-Pouch in 199X) before that I had a ileostomy for 10 years.  But since the post I have been pretty much taking it easy and as I mentioned keeping the Cath in so it can heal and I have not seen any blood so I think that is good.  One day I hope to move to a state where there is a full time Surgeon that specializes in this.  I wish I was financially able to make the move to LA or a closer city but that just is not the case right now.   If I ever became seriously wealthy or famous I would definitely make a point of increasing awareness and doing what I could to let those know that don't just how good things can be (even with the challenges like I am having) .  All the best! ;-}

Sincerely,

Will

Using a Marlen catheter may help with intubation. The end of the catheter is a "bullet" style, and doesn't bend like the Medina catheter.

Hi Will,

I know exactly what you are talking about...I call it 'buckling' like the cath collapses at the end because it cannot push its way through. It happens to me often, due to the angle of my valve right now. I had a pouch twist about 10yrs ago, it fell partially off of the wall and pulled the valve sideways with it...so that the trajectory was no longer straight but sort of a left turn. It was nearly impossible to navigate because my tube kept hitting the same spot...they eventually went in and reattached the pouch but the valve was permanently damaged and now has a divot in one side, sort of like an elbow where the tube kept pushing at it...so when I put the tube in I have to sort of turn or twist it to avoid that spot or it will buckle on me. 

The easiest trick that I have is that I use old catheters that are a bit stiffer than the new ones; the new ones are too soft and tend to bend and then grab a piece of meat inside the valve (the blood that you are seeing).

I have never done any permanent damage that way but I am sure that it could in the long-run. Keep your old caths and go slowly.

Sharon

skn69 posted:

Hi Will,

I know exactly what you are talking about...I call it 'buckling' like the cath collapses at the end because it cannot push its way through. It happens to me often, due to the angle of my valve right now. I had a pouch twist about 10yrs ago, it fell partially off of the wall and pulled the valve sideways with it...so that the trajectory was no longer straight but sort of a left turn. It was nearly impossible to navigate because my tube kept hitting the same spot...they eventually went in and reattached the pouch but the valve was permanently damaged and now has a divot in one side, sort of like an elbow where the tube kept pushing at it...so when I put the tube in I have to sort of turn or twist it to avoid that spot or it will buckle on me. 

The easiest trick that I have is that I use old catheters that are a bit stiffer than the new ones; the new ones are too soft and tend to bend and then grab a piece of meat inside the valve (the blood that you are seeing).

I have never done any permanent damage that way but I am sure that it could in the long-run. Keep your old caths and go slowly.

Sharon

 

Thanks Sharon,

I remember from before.. i keep a few different ones in the freezer.  It has pretty much healed but sometimes I must snag it just a little.  It has been pretty cooperative since then though I did leave the cath in for a few days.  Knowing what I do now about this design or how it appears in my mind I probably could have possibly avoided the surgery last year but to be honest It was a lot worse than what happened so who knows.  I guess you have to do what seems best and find out where it take you.  I appreciate your input.

Will

I have a narrowing before the valve which makes it difficult to insert the tube.  This became a crisis a few years back, causing me much grief and a couple of hospital visits for dilation.

I use the Medena 30Fr straight catheter.  The doctor (actually I think it was one of the nurses) suggested that I insert a smaller catheter thought the Medena to 'guide' the catheter past the difficult spot.  I use a 14Fr Urinary Catheter, Straight Tip Male, from Coloplast (Ref # 414), pushing it through the Medena with about 1 cm showing (not too much or it will bend). Lots of lube, hold tight in place at top of Medena tube, gently insert and, when in, pull out the urinary catheter.  Works for me.  The urinary catheters are supposed to be one-use but for this purpose can be used weeks on end.  

LuckyLady posted:

I have a narrowing before the valve which makes it difficult to insert the tube.  This became a crisis a few years back, causing me much grief and a couple of hospital visits for dilation.

I use the Medena 30Fr straight catheter.  The doctor (actually I think it was one of the nurses) suggested that I insert a smaller catheter thought the Medena to 'guide' the catheter past the difficult spot.  I use a 14Fr Urinary Catheter, Straight Tip Male, from Coloplast (Ref # 414), pushing it through the Medena with about 1 cm showing (not too much or it will bend). Lots of lube, hold tight in place at top of Medena tube, gently insert and, when in, pull out the urinary catheter.  Works for me.  The urinary catheters are supposed to be one-use but for this purpose can be used weeks on end.  

Thanks for sharing and the suggestion.  I actually have thought several time about using something that could keep the catheter more rigid until it passes thru the one area but the part about having a constant "flow" soon as it is in makes my idea not so great.  Fortunately I have not had the problem since this post though I think there is still an area that was damaged which is still healing.  I will be looking for a certain doctor to do my scope and my Surgeon will be giving them a list of things to check for once I have the right doctor here.  All the best,

Fingers crossed that all goes well for you in the future!

Just a note Will, 

This happens essentially with the new Catheters which is why I keep reusing the old ones for years (up to 10yrs or until they fall apart)...they stiffen with age and make the path easier to navigate. 

I just cracked 2 old ones while out of the country for work. Freaked right out...had to use a new one (I travel with 3 kits thankfully...1 in purse, I in carry-on and 1 in backpack for security and reassurance...2 out of 3 broke!) that was soft and weak...I ended up taping the old ones (horrid leaking through the cracks but better than the new one buckling in on me).  

Stick to the old ones if you can...I use both straight and curved depending (a very mobile pouch...sitting on my bladder so it depends on how full my bladder is for trajectory)...Not so sure that putting a frozen cath into a delicate valve is a great idea...I get the stiffening it bit but could it be burning cells in your valve? Just curious? 

Sharon

skn69 posted:

Just a note Will, 

This happens essentially with the new Catheters which is why I keep reusing the old ones for years (up to 10yrs or until they fall apart)...they stiffen with age and make the path easier to navigate. 

I just cracked 2 old ones while out of the country for work. Freaked right out...had to use a new one (I travel with 3 kits thankfully...1 in purse, I in carry-on and 1 in backpack for security and reassurance...2 out of 3 broke!) that was soft and weak...I ended up taping the old ones (horrid leaking through the cracks but better than the new one buckling in on me).  

Stick to the old ones if you can...I use both straight and curved depending (a very mobile pouch...sitting on my bladder so it depends on how full my bladder is for trajectory)...Not so sure that putting a frozen cath into a delicate valve is a great idea...I get the stiffening it bit but could it be burning cells in your valve? Just curious? 

Sharon

Dear Sharon,

I have fortunately been doing very good.  I understand about the hardened caths and have had them eventually crack in places where they cut into me so I am checking them  usually ever since that incident.  But lately I have been using the Medina instead of the Marlen as for me it seemed the Marlen were more easy to bend or soften.  I take that point about the frozen caths seriously and I can not quote who gave that info to me now but I think it was someone that would know.. but I will double check.  That has always been a last action course to take.  I also need to say that I always use some kind of lubricant so that keeps the cold surface from being like a full on shock.   But I have not had a need to use that action in quite awhile.  My surgeon suggested using Olive oil and another but I would have to look that up.  But here is the thing that I have not mentioned here though I think it is likely the best place.  (I did mention it to my surgeon)  And that was an observation that when I am about to intubate or empty my BCIR with the catheter I have noticed on a very high consistency that once I have urinated the area that seems to not allow the cath in seems to immediately relax and there is no resistance.  (nothing significant)  I have not the degree of knowledge in the internal anatomical workings but this is something that once I realized has nearly made the folding a non-issue....it is not a "non-issue" but I can say that whatever this is it has kept me well.  Maybe over time some others will notice or not if they experience anything similar.  If I was in more close proximity and communication with my surgeon I would speak to him about it.  But for now I decided or am glad that I kept this post up as I do not want others to suffer as I did and you Sharon have always been very helpful and really appreciate it. 

Thx Will

I agree that the catheters are not as firm as the once were. and the holes are somewhat larger, making them bend more easily.  In my experience, the catheters soften with use.  I change them every couple of months, or when they start to fold.  I must use the technique of introducing the catheter through the valve with a smaller catheter inside as lead, however.  Comes up against a wall otherwise.

Thanking skn69 for the much-needed support when I was in hospital with a blockage 20 months ago.  Fairly smooth sailing since!

Pamela