Jump to content


Welcome to the Apparelyzed Spinal Cord Injury and Cauda Equina Syndrome Support Forum


Sign In  Log in with Facebook Log in with Twitter

Create Account
Welcome to Apparelyzed, an active and vibrant spinal cord injury and cauda equina syndrome support forum. Like most online communities you must register to view or post in our community, but don't worry this is a simple free process that requires minimal information for you to signup. Be apart of our spinal cord injury support community by signing in or creating an account.
  • Start new topics and reply to others
  • Subscribe to topics and forums to get email updates
  • Get your own profile page and make new friends
  • Send personal messages to other members.
  • Talk to others in real time in the Chat Room
We look forward to welcoming you to our community and reading your contributions and questions.
 
Simon
Forum Administrator.
 

Photo
- - - - -

Getting Rid Of The Catheter?




  • Please log in to reply
23 replies to this topic

#1 Doer

Doer

    Member

  • Members
  • Pip
  • 14 posts
  • Gender:Male
  • Country:Land
  • Spinal Injury Level:N

Posted 11 September 2012 - 12:52 PM

Hello everyone!

Many people, including doctors and people with SCIs, tell me not to worry about the catheter (a foley) because eventually I am going to abandon it. They seem quite sure about it, even though I haven't notice any significant change in that direction for the last 15 months. May be I am missing something... Can you give me some advice how to improve my bladder control and if possible get rid of the catheter?

Edited by Doer, 11 September 2012 - 12:52 PM.


#2 ClaraTaylor

ClaraTaylor

    Advanced Member

  • Members
  • PipPipPip
  • 2,714 posts
  • Gender:Female
  • Country:Yorkshire, UK
  • Spinal Injury Level:Incomplete T12-L5

Posted 11 September 2012 - 02:19 PM

Doer,
It would be useful if you could tell people a little more about yourself i.e. what level your spinal injury is, whether it is complete or not, etc.

#3 Doer

Doer

    Member

  • Members
  • Pip
  • 14 posts
  • Gender:Male
  • Country:Land
  • Spinal Injury Level:N

Posted 11 September 2012 - 05:38 PM

Doer,
It would be useful if you could tell people a little more about yourself i.e. what level your spinal injury is, whether it is complete or not, etc.


Yes, you are right.
I'm incomplete - TH12 and L1. 16 months after my injury. I can walk with a walker (a one without wheels)

However, I stress once again, that the people (doctors and other people with SCI) were so sure that I eventually will get rid of the catheter, even though some of them were not really aware of my level of injury, in fact some of them have not even seen me. That is why I am confused - they are all so certain. I assume they base their prediction on the experience they had so far - that is people with incomplete SCI that they have met. So if my assumption is right they should have seen a lot of incomplete SCI who are not using a catheter.

#4 Tetracyclone

Tetracyclone

    Super Advanced

  • Members
  • PipPipPipPip
  • 9,001 posts
  • Gender:Female
  • Country:Upstate New York, USA
  • Spinal Injury Level:C-5-7 incomplete
  • Injury Date:27-05-2008

Posted 11 September 2012 - 08:30 PM

Doer,
Sounds like utter nonsense. How in heaven would you learn bladder clontrol while using a foley. Magic? And why havve we almost never heard this happy news from our members?

#5 edlee

edlee

    Super Advanced

  • Members
  • PipPipPipPip
  • 5,620 posts
  • Gender:Male
  • Country:South Western Pa
  • Spinal Injury Level:t-10 complete
  • Injury Date:11-18-2004

Posted 11 September 2012 - 08:50 PM

I'm pretty sure they are referring to the foley,, not to catheters in general. While it is certainly possible for an incomplete to recover enough feeling and control to be completely cath free,,,, it doesn't happen that often. Most are satified if they can stay dry by using intermitent cathing or with what are called, condom caths.

If you can feel when you are full,,, and can control your sphincter,, then,, perhaps,, you will be among the happy few. If you find it difficult to do either of the above,, then read more about cathing with the search feature. You will find something that suits your lifestyle.

good luck,
ed

#6 Millard

Millard

    Intermediate Member

  • Members
  • PipPip
  • 1,060 posts
  • Gender:Male
  • Country:Plains, Georgia USA
  • Spinal Injury Level:C5-C6 Tetraplegia
  • Injury Date:20-07-1967

Posted 13 September 2012 - 01:35 PM

Hello everyone!

Many people, including doctors and people with SCIs, tell me not to worry about the catheter (a foley) because eventually I am going to abandon it. They seem quite sure about it, even though I haven't notice any significant change in that direction for the last 15 months. May be I am missing something... Can you give me some advice how to improve my bladder control and if possible get rid of the catheter?


Hello Doer,

After my injury. I didn't use a catheter. After forming 2 bladder stones very quickly, my urologist inserted a supra pubic catheter in me in 1968. I used this for almost 5 years while he regularly assured me it was temporary. In 1972, he removed it and I voided normally until 2004. At this point, I started doing the intermittent cathing, which I still do now. When first removed, you will void often and you will get a little depressed at first. It requires patience and confidence.

Good luck and it may work for you as it did for me.
Millard
"Life's tough. It's even tougher if you're stupid!" - John Wayne

#7 Doer

Doer

    Member

  • Members
  • Pip
  • 14 posts
  • Gender:Male
  • Country:Land
  • Spinal Injury Level:N

Posted 14 September 2012 - 06:31 PM


Hello everyone!

Many people, including doctors and people with SCIs, tell me not to worry about the catheter (a foley) because eventually I am going to abandon it. They seem quite sure about it, even though I haven't notice any significant change in that direction for the last 15 months. May be I am missing something... Can you give me some advice how to improve my bladder control and if possible get rid of the catheter?


Hello Doer,

After my injury. I didn't use a catheter. After forming 2 bladder stones very quickly, my urologist inserted a supra pubic catheter in me in 1968. I used this for almost 5 years while he regularly assured me it was temporary. In 1972, he removed it and I voided normally until 2004. At this point, I started doing the intermittent cathing, which I still do now. When first removed, you will void often and you will get a little depressed at first. It requires patience and confidence.

Good luck and it may work for you as it did for me.


Thank you all for the replies and especially you Millard! May I ask you how did you empty your bladder before the urologist inserted the supra pubic catheter and also were you able to pee normally after he removed it in 1972?

#8 Millard

Millard

    Intermediate Member

  • Members
  • PipPip
  • 1,060 posts
  • Gender:Male
  • Country:Plains, Georgia USA
  • Spinal Injury Level:C5-C6 Tetraplegia
  • Injury Date:20-07-1967

Posted 14 September 2012 - 07:14 PM

Hi Doer,
I have bladder sensation and can void when needed. The problem I have/had was not emptying the bladder with a residual of around 350 ml's which resulted many years of uti's. I started doing a clean intermittent catherization in 2004 which did empty the bladder but I still had uti's. In August of 2010, I tried injecting Vetericyn VF into my bladder to fight the uti's. I have been 24 months straight since my last uti's and I feel great. (I use the Vetericyn VF off label.)

Good luck.
Millard
"Life's tough. It's even tougher if you're stupid!" - John Wayne

#9 edlee

edlee

    Super Advanced

  • Members
  • PipPipPipPip
  • 5,620 posts
  • Gender:Male
  • Country:South Western Pa
  • Spinal Injury Level:t-10 complete
  • Injury Date:11-18-2004

Posted 14 September 2012 - 07:30 PM

Millard,,, I'm sure I could go through the search feature, and find out,, but perhaps you could answer me here,, so that some of those not familiar with the site might see it, too.

I bought some of the Vetericyn, But,, since I use a foley,, I can't keep the solution in my bladder very long. I am using a 6 to 1 mixture,, hoping that the additional volume might be helpful. Do you dilute your's at all,, and how long do you recommend we try to keep it "in there"?
ed

#10 greybeard

greybeard

    Super Geek

  • Members
  • PipPipPipPipPip
  • 13,880 posts
  • Gender:Male
  • Country:Dorset, UK
  • Spinal Injury Level:L1-L5 incl - Stenosis
  • Injury Date:21-03-2001

Posted 14 September 2012 - 10:59 PM

Hi Ed,
You don't have to troll through loads of stuff to find the page(s) you want. Hit the star to the right of the search box. In the page that opens type vetericyn in the "Find Words" box, and Millard in the "Find Author" box. Scroll to the bottom and hit "Search Now".

What you want is about half way down the first page in a post from Tetracyclone.
Hope that helps.

"Do not go gentle into that good night, Old age should burn and rave at close of day;  Rage, rage against the dying of the light" 

[Dylan Thomas]


#11 Ferreira

Ferreira

    Intermediate Member

  • Members
  • PipPip
  • 379 posts
  • Gender:Male
  • Country:Portugal
  • Spinal Injury Level:T1

Posted 14 September 2012 - 11:35 PM

I have heard quite the opposite, most docs never tell a word about recovering nerves or its possibility.
You can abandon the folley if you do intermitent caths or have the sfincter open and use a condom for incontinence. Other than that i believe it may be possible for you to regain some control, it´s an incomplete injury.

#12 Millard

Millard

    Intermediate Member

  • Members
  • PipPip
  • 1,060 posts
  • Gender:Male
  • Country:Plains, Georgia USA
  • Spinal Injury Level:C5-C6 Tetraplegia
  • Injury Date:20-07-1967

Posted 16 September 2012 - 09:18 PM

Millard,,, I'm sure I could go through the search feature, and find out,, but perhaps you could answer me here,, so that some of those not familiar with the site might see it, too.

I bought some of the Vetericyn, But,, since I use a foley,, I can't keep the solution in my bladder very long. I am using a 6 to 1 mixture,, hoping that the additional volume might be helpful. Do you dilute your's at all,, and how long do you recommend we try to keep it "in there"?
ed


Hello Ed,

I apologize for not getting back to you sooner. I use Vetericyn VF and just inject it into the bladder and leave it until I cath again. I sometimes have injected it into the bladder and leave it in overnight and have never had a problem at all. Because it works exactly like you body attacking bacteria, you cannot over us ite. If I could afford it, I would use it daily rather than the 3 days a week I use it now.

Good luck.
Millard
"Life's tough. It's even tougher if you're stupid!" - John Wayne

#13 Tetracyclone

Tetracyclone

    Super Advanced

  • Members
  • PipPipPipPip
  • 9,001 posts
  • Gender:Female
  • Country:Upstate New York, USA
  • Spinal Injury Level:C-5-7 incomplete
  • Injury Date:27-05-2008

Posted 17 September 2012 - 10:07 PM

Edlee,

I have never heard of so much dilution. It may not be effective at that strength. Those using foleys simply crimp the tubing for whatever length of time they want to retain it. A bit of belly massage is also useful to move it about in the bladder.

#14 Doer

Doer

    Member

  • Members
  • Pip
  • 14 posts
  • Gender:Male
  • Country:Land
  • Spinal Injury Level:N

Posted 20 September 2012 - 09:04 AM

Just pushing the topic if anyone has more to add...

#15 nknight.92

nknight.92

    Intermediate Member

  • Members
  • PipPip
  • 326 posts
  • Gender:Female
  • Country:USA, North Dakota
  • Spinal Injury Level:T12-L2 Incomplete
  • Injury Date:21-07-2012

Posted 13 October 2012 - 04:18 AM

I'm pretty sure they are referring to the foley,, not to catheters in general. While it is certainly possible for an incomplete to recover enough feeling and control to be completely cath free,,,, it doesn't happen that often. Most are satified if they can stay dry by using intermitent cathing or with what are called, condom caths.

If you can feel when you are full,,, and can control your sphincter,, then,, perhaps,, you will be among the happy few. If you find it difficult to do either of the above,, then read more about cathing with the search feature. You will find something that suits your lifestyle.

good luck,
ed


I'm one of the lucky few! Although now I'm wondering what's going on! Since I got the Foley out, I've had control of my bladder. It lessens when my bowels are full, then it's really hard to pee. Today I had my first urine accident and trying to find a post on here about that.

#16 ClaraTaylor

ClaraTaylor

    Advanced Member

  • Members
  • PipPipPip
  • 2,714 posts
  • Gender:Female
  • Country:Yorkshire, UK
  • Spinal Injury Level:Incomplete T12-L5

Posted 13 October 2012 - 07:21 AM

Nknight -i'm on my phone right now but assuming by your photo that you're a lady (sorry if not!!!), could your period / hormones be affecting your bladder? I find that if I get a UTI (luckily few and fair between) or I'm on my period my bladder goes a little over sensitive and won't hold as much fluid and so it decides to void without any warning.

Since you have control of your bladder do you do any training exercises to improve your hold ability?

#17 Gem

Gem

    Member

  • Members
  • Pip
  • 16 posts
  • Gender:Male
  • Country:North Carolina
  • Spinal Injury Level:T-3 / T-10
  • Injury Date:07-10-2010

Posted 13 October 2012 - 08:25 PM

Here is the GAME CHANGER for getting rid of the catheter. WWW.urincare.com make sure to leave the e off of urin. So far medicare doesn't cover it in the U.S. but the VA (Veterans Administration) does. My VA Doctor has ordered one for me but it has't arrived yet so I have NO personal experience with it yet.

This unit is selling for around $ 4,000.00 US.

#18 nknight.92

nknight.92

    Intermediate Member

  • Members
  • PipPip
  • 326 posts
  • Gender:Female
  • Country:USA, North Dakota
  • Spinal Injury Level:T12-L2 Incomplete
  • Injury Date:21-07-2012

Posted 24 October 2012 - 03:38 PM

Nknight -i'm on my phone right now but assuming by your photo that you're a lady (sorry if not!!!), could your period / hormones be affecting your bladder? I find that if I get a UTI (luckily few and fair between) or I'm on my period my bladder goes a little over sensitive and won't hold as much fluid and so it decides to void without any warning.

Since you have control of your bladder do you do any training exercises to improve your hold ability?


Yes, I'm a woman :) I'm always on my phone too. I haven't had a period since December 2011. I got endometriosis after my son's birth so my doctor has me continuously taking birth control (no placebos).
I ended up in the ER last Friday cuz I didn't pee for 10 hours straight. They said they found bacteria in my bladder but it wasn't a UTI. I've been on the Foley since then but it seems that after they irrigated my bladder all my bladder spasms and my horrible leg spasms went away. So I'm blaming it on that!

#19 Gem

Gem

    Member

  • Members
  • Pip
  • 16 posts
  • Gender:Male
  • Country:North Carolina
  • Spinal Injury Level:T-3 / T-10
  • Injury Date:07-10-2010

Posted 21 December 2012 - 09:29 PM

My Urincare system arrived this morning. Have it on for the 1st time. The pump is noysier than I expected. Only goes off for a few seconds at a time. I can see that being around people that I am going to have to have a few rejoinders because everyone around is going to be questioning what the noise is. Any suggestions ?



#20 xxm

xxm

    Intermediate Member

  • Members
  • PipPip
  • 288 posts
  • Gender:Male
  • Country:Bulgaria
  • Spinal Injury Level:C6/C7

Posted 22 December 2012 - 11:42 AM

Hello everyone!

Many people, including doctors and people with SCIs, tell me not to worry about the catheter (a foley) because eventually I am going to abandon it. They seem quite sure about it, even though I haven't notice any significant change in that direction for the last 15 months. May be I am missing something... Can you give me some advice how to improve my bladder control and if possible get rid of the catheter?

Doer,

 

I've been managing my bladder without catheter for 37 years. I have sensation but can't control my bladder sphincter. All these years UTI's were rare. Somehow I managed to use the reflex triggered by a filled bladder. It can be triggered easily when you drink more water 2-3 l/day.

 

With years this reflex seemed to get weaker and I had residual urine. As a result this year - 6 month ago - I began ISC but also I use the old way when I don't feel like inserting a cath.

 

I think you must give your bladder a chance to empty without foley. If it does'n work you can begin ISC at any time.

 

Rudy


Nobody's Pain Can Be Shared.

#21 Liz56

Liz56

    Intermediate Member

  • Members
  • PipPip
  • 311 posts
  • Gender:Female
  • Country:Scotland
  • Spinal Injury Level:probable incomplete CES

Posted 24 December 2012 - 12:16 AM

When I had a foley in I used to have a flip-flow valve in between the catheter and the leg bag.  That way I could shut off the flow and allow my bladder to fill a bit more normally.  I used to be able to manage to flip the valve through my clothing, so if I was out and not wanting to have overflow accidents I could have it free draining whenever I felt like it.  It definitely helped "retrain" my bladder a bit so that when the foley was finally removed I had a reasonable bladder capacity still so that made ISC much easier and with very few accidents in between (generally only when something else is going on with my body).

 

When you use a flipflow between catheter and bag, I got told you only need to change it once a month (but change the bag more often) or so.  If you just use the flip flow without a bag, then you have to change it more often because the end is exposed to the air and therefore more possibility of bugs getting in.



#22 brinica

brinica

    Member

  • Members
  • Pip
  • 10 posts
  • Gender:Female
  • Country:usa
  • Spinal Injury Level:cauda equina
  • Injury Date:30-11-2011

Posted 30 December 2012 - 09:11 PM

I self cath & Ive noticed that I can feel when I have to go (esp with a full bladder) Im not sure if that is a sign of  control coming back?



#23 Waltswheels

Waltswheels

    Member

  • Members
  • Pip
  • 12 posts
  • Gender:Male
  • Country:Usa
  • Spinal Injury Level:c7/para
  • Injury Date:29-06-2012

Posted 09 January 2013 - 12:50 AM

Don't listen to all the negativity here. C5 incomplete I can urinate without a cath or any other type of aid. Unfortunately I can't hold it as long as I used to be able to, plus alcohol and caffeine having me running to the bathroom often so I try to avoid them.
I regained control after a few months of hard "therapy" much of it focusing on core until I regained leg function.

In short, it is possible. I spent at least an hour or 2 a day especially in the hospital just focusing on trying to urinate. I had a lot of luck but it is possible.

#24 Kwag_Myers

Kwag_Myers

    Intermediate Member

  • Members
  • PipPip
  • 1,207 posts
  • Gender:Male
  • Country:South-East Michigan
  • Spinal Injury Level:T12 Incomplete/CES
  • Injury Date:11-08-2007

Posted 09 January 2013 - 01:18 PM

fyi, Doer hasn't logged in since October. But for the sake of anyone who might benefit from this, allow me to share my experience. I started using intermittent caths in rehab and I find it odd that Doer, also a T12 incomplete, is still on a foley. According to my rehab docs, any injury at or below the T12 results in a closed bladder, so condom caths are worthless. I did have doctors tell me to keep my output below 400 cc in case my function returned so as not to get my bladder all stretched out. But that's really hard to do and I abandoned the practice after about a year.

 

Doer, if you do happen to login, I'd say after 15 months you're probably not going to see much, if any improvement in functionality. I also suggest you get rid of the foley as they present a higher risk of infection and start using intermittent caths. My personal rule is to cath every four hours or (when partying) one hour after drinking 24 ounces (especially if you're drinking beer or coffee).


'Cause that's how I roll! Posted Image


Spinal Cord Injury & Cauda Equina Syndrome Support

This website is a way for those with spinal cord injuries and cauda equina syndrome to share experiences and advice. Any medical matters, treatments or alternative therapies discussed on this website should be thoroughly reviewed by a medical professional or therapist before being acted upon. Under no circumstances should you alter prescribed medication or a medical care plan without consulting your doctor or care plan supervisor first.