Can't get my catheter through the valve...

I've just had a similar issue with my Koch pouch (after more than 35 years) and have had a catheter (inserted by by GI) in 24/7 for the past month.  I live in Germany where the Koch pouch is uncommon but found a surgeon in Köln that does the procedure.  He said it was not uncommon to have these issues with the older pouches (he has seen several).  How were your problems resolved Jasmine 2 and Lagoonbeach?  Your posts are 3 years old so hopefully all is now well.

My kpouch valve has slipped twice and I have had it since 2015. I also had a catheter in and wore an osteomy bag until I could see my surgeon. So far both slippages needed a valve redo which as you may know is surgical & 4-6 weeks of recovery. I love my kpouch but Dr. Dietz said I am a 'slipper' ... so my valve may slip again (both slips were caused by ?, but they both came off the abdominal wall). I hope you can get it resolved soon! Thinking of you...Kara

So far so good! 3 irrigations with the catheter going in like a hot knlfe in Butter!  The inflammation has healed and I am using a new catheter that the surgeon recommended - this is the first one I've found that is one is available in Germany! Fingers crossed for continued success!

I've had a small problem on occasion not able to intubate. Probably nothing like what you're having. It usually occurs when I don't empty the pouch right away. I put extra lubrication on and then I take a deep breath and slowly exhale. I may do this several times. I try my very best to relax. I think stressing doesn't help and tenses the muscles. Fortunately this seems to work for me. The best. Mary

I was going to post this exact topic when I came across this one. Firstly I hope that everyone here that has posted has come closer to resolving the issues they are being challenged with.  Now I need to ask others here if while in the event of not being able to get your catheter to go in correctly (I have had this challenge as well), did you sometimes feel like you may have scraped part of the inside causing some blood? I have had this happen when to my surprise (and concern) I had somehow caused the cath to fold over and in gently removing it could see it was not correct and though stressed out I was careful to remove it.  I am now trying to use some other lubricants such as Olive Oil and Mineral Oil. (Doctors idea).  I had continued with the KY but after 1 successful week, 2 days ago I experienced the inability to get my cath in and sure enough I saw some blood (not much), and it seems to be when my BCIR is full, maybe waking up and gas has built up or this type of situation.  I suppose I am not asking for answers but maybe just to see if others have experienced this as well.  I will be having a scope in a month or so and my surgeon will be giving the local surgeon the info that he wants taken down during the viewing.  I wish I lived in a State where there was a qualified BCIR Surgeon but Mine is in California and I trust him 100 percent.. He created this recent BCIR just 2 years ago replacing a 20 year old Kock Pouch that was failing in the valve (incontinent), and other issues were found with it after they got into my abdomen in which I am so grateful I was in good hands (literally).  So, Having this BCIR was/is new in that it works much better in many ways.  I have to be more conscientious of when I eat and then how soon I sleep. And I admit that after all the issues I had towards the end of the life of the first pouch I am still sometimes self conscious about using my cath when away from home.  I am hoping that I have not hurt myself (I have not seen blood after any of these issues) only at the moment. And of course I am wanting to make sure that I resolve this issue so I a not having the difficulty in using catheter above the simple relaxation and being patient type of situations.  

Hi 4ever, 

Well, what you are describing sounds like your valve is turning in a slightly different direction and your catheter may not be upward depending on how full it is or what I have been doing (yoga, pilates...hanging upside down...) so I keep 3 different types of catheter in each of my kits...

I have the typical curved one that used to be my go-to cath but now seems to get hooked on the side of my valve occasionally (the flute-holes hook on something and cause a couple of drops of bleeding...nothing serious but not recommended on a regular basis...it could eventually cause erosion or ulcers).

The 32 strait is great most of the time, I keep a 30 or 28 in my kits as well for those difficult days...The older catheters become hardened and I keep them around as long as I can (after a while they crack and leak), they tend to not 'buckle' at the end when I have difficulty pushing through.

I use oils as lube most of the time now (although they contribute to the hardening of the catheter according to the manufacturers) testing different kinds...I buy them in tiny spray bottles so that I can just squirt a drop or 2 at the cath...jojoba is a bit thick (and I am not sure I like the odour) so it plugs up the spray bottle but I find that carrot oil and avocado are very healing and are neutral in odor...olive works just fine too...you can recycle old lube bottles (wash them out well with soap and water before using)  and fill them with your favorite oil.

Hope that something here helps you.

Sharon

I now wear my catheter 24/7, I ended up going back to the Mayo Clinic around 5 times in 2014 to get my catheter in.  I can't have surgery because I am highly allergic to adhesive, which is why I had the Kock Pouch done in the first place.  I can't take a chance of a slipped valve or a leaking valve, which at this time, I have no leakage.  So I am content with my situation the way it is.  I change my catheter about once a month, because they get so hard.  Thank heavens, so far, I've gotten it back in.  This is my new life with my Kock Pouch.  I have accepted it.  I pray you are all doing well.

Jasmine, I'm glad you found a solution. Amazing what we will accept as a new normal, eh? Whatever gets us through the day is the right thing.

Jan

Yes years of the catheter problem.

Times I have gone back to advice from brilliant GP. after my son was born the stoma kept came right through externally to the surface. mega frightening.

This was result of muscle weekness from my sons birth.

Anyway she taught me to push the stoma back until muscles got stronger.

How clever was she?

If my valve does jam I cane push it back into place myself.  As she taught me

I can gently manipilate the valve open by my smallest finger. This should enable the opening of the valve to be located. after this no problem. I believe the catheters are are pulling the valve through as we take them out.

In over 40 years I have only been admitted to hospital once with valve problems and this was from far too much lifting with house move.

I suggest anyway should discuss this with stoma nurse. As stoma nurse here in Scarborough said it makes sense as my finger is only doing the same as the catheter would do. The difference is, I can locate just direction the valve is in.

Please discuss this method first with health professional. anyway it works for me.

Patricia Walker posted:

Yes years of the catheter problem.

Times I have gone back to advice from brilliant GP. after my son was born the stoma kept came right through externally to the surface. mega frightening.

This was result of muscle weekness from my sons birth.

Anyway she taught me to push the stoma back until muscles got stronger.

How clever was she?

If my valve does jam I cane push it back into place myself.  As she taught me

I can gently manipilate the valve open by my smallest finger. This should enable the opening of the valve to be located. after this no problem. I believe the catheters are are pulling the valve through as we take them out.

In over 40 years I have only been admitted to hospital once with valve problems and this was from far too much lifting with house move.

I suggest anyway should discuss this with stoma nurse. As stoma nurse here in Scarborough said it makes sense as my finger is only doing the same as the catheter would do. The difference is, I can locate just direction the valve is in.

Please discuss this method first with health professional. anyway it works for me.

 

  

 

 

Patricia,

Are you saying that you stick your finger into your stomach and you can feel the valve?

That is how my surgeon used to test the valve...And it isn't into my stomach, it is just into the valve...it may sound bizarre or ucky but it isn't, just part of the new normal for us k pouchers.

We find solutions that would astound rocket scientists!

Don't worry, most of this is rare and not something that you should have to worry about.

Sharon

I was just saying that to my mother as we were struggling to flush. We tried something crazy and it worked and she told me to be patient as we sometimes figure out strange solutions- like I did with my ileostomy. I told her that the difference is that figuring out solutions with my ostomy bag wasn’t painful like this. I can’t be patient with trial and error when I’m in so much pain. I’m really wondering if I made the right decision choosing to come to Cleveland for a Kpouch versus staying home and getting a permanent ostomy. These past couple weeks have been extremely tough. 

Shavon, 

There is pain and then there is Pain.

For now, you are post-op, things are not even close to being healed, things are finding their place in your body, settling in and learning their new functions...there will be pain, discomfort, and fear. Lots of fear, panic, and confusion...this is all so new to you, so different. So give it time. Relax (I know that that is the hardest thing to do) and do not expect too much too soon.

It takes time. There is no rushing this stuff and it is going to take your body and mind quite a bit of time to get used to this new plumbing, wrap your head around all the new stuff that you have to do (intubate, irrigate...) so stop worrying...unless there is a real problem. 

Severe and sharp pain may indicate that something is wrong but general achy pain or waves of pain may be normal and part of the healing process. Things will 'pull', feel tight but that is the normal stuff. Pain is there to tell you that you are doing something wrong, to slow down, breath and take your time. You cannot rush this process.

I did mine at 18 when I was part of the human trial in Canada and no one except 12 other people had one (well, not all 12 were still around back then)...even my surgeon didn't want to do it...but it has been 38yrs and I do not regret my decision...even when things went sideways. My only regret is that people do not talk about it enough, do it enough and spread the word on what a wonderful solution this can be.

Make lists, ask questions, don't be afraid to appear stupid...there are no rule books for this one...you are allowed to be scared. But it will get better. I promise.

Sharon

have you checked in with the stoma nurses?  re pain and intubating techniques?

some suggestions: use lots of lub.  pee so that bladder is empty and it also relaxes you more.  put catheter in freezer for 20 min.  stand up--w cath kinked over or clamped off--and lean forward a bit, or kneel in front of toilet.  most of all relax, relax, relax.  if you can't get cath in then stop for awhile and don't tense up.  it takes practice!!