Neurogenic Bladder, Tired out bladder...

Archives1

Staff member
Ok, I have urinary retention, weak bladder, thinning bladder floppy bladder, urge incontinence, tight urethra, OAB, ( I don't get cause I have low pressure supposedly emptying) Been under 2 urologist's care, told me basically go home self cath up too 8 times per day, and see your PCP when you have trouble inserting a self cath and she will insert a huge Foley to dilate you for a while.

Ok, PCP wants me to come in and get a Foley and keep it in and come to her monthly for change out.( I did this for 2 years and they thought I was getting to many infections) Now, I'm also getting infections, and urologist is talking about daily low level antibiotics.

I hurt from jabbing the straights in, and trying to get through into the bladder, and there is damage. (The cathing has been going on for several years, and its noted "this is a long term catheter patient"

I have been asking questions to those in here, trying to find out what is working for them.

Urologist suggested again and even wrote in his notes, that this patient will need a suprapubic.

I'm not ready for that.

Options anyone? Thoughts?

Bomm
 
That is what I want to stay away from have retention take meds so trying to stay on them because had a lot of uti's. THE MEDS make me wet all the time and must wear diaper most of time to avoid accidents.Good luck
 
I don't have retention just the opposite I am constantly wetting myself. It only happens twice a day but the volume is huge. I can't find any diapers that can hold that much. I am 49 and getting very discouraged
 
sport said:
That is what I want to stay away from have retention take meds so trying to stay on them because had a lot of uti's. THE MEDS make me wet all the time and must wear diaper most of time to avoid accidents.Good luck

Can I ask you what meds your on to stop the retention?
 
I was on Detrol for about three years for urges. I had control of them at that point and the Detrol stopped the urges. When they started coming back my internist changed me over to Ditropan. That stopped the urges for about a year. Then when they came back last fall, they were stronger and that was when the incontinence started. That is when I went to a urologist. I was a nurse/paramedic for 25 years so going to the bathroom was a luxury, not a necessity. So it would be nothing to not go to the bathroom 12-16 hours at a time. I would feel a lot of pressure but no urgency or incontinence. So my usual daily habit was urinating twice or maybe three times a day. So I wasn't at all surprised when they did the urodynamic testing that I have a bladder capacity of nearly 1500cc's. While they were filling my bladder, I felt no sensations until they hit 900cc's. That sensation rapidly progressed to urgency and I was incontinent of 1275cc's, which explains the soakings when I have an accident. My prostate exam and PSA are perfectly normal so that is not the cause. I was diagnosed with neurogenic bladder which is why I don't feel my bladder filling. The way it acts is I get a sudden overwhelming urge that I can't hold and once the flow starts I can't stop it until my bladder is empty. My urologist did try Flomax thinking maybe I had "overflow" incontinence but when I stopped the Ditropan and changed over to to the Flomax, My wetting episodes increased to about every 3-4 hours. The volumes weren't as large but my bladder spasms increased dramatically. After a month on that, it was stopped and was started on Myrbetriq which has not changed a thing except raising my blood pressure. I am going back to the urologist in mid July and I am going to ask him about the nerve stimulator. I think we have pretty much exhausted the medication options and I can't find diapers that contain my volume without leaking. It has become increasingly distressing for me. I am a relatively young man and I don't want to continue wetting my pants unless there are no other options. I think he may recommend Botox which I won't agree to since it is a short term solution if it works at all. I have tried going to the bathroom every couple of hrs but if I don't feel full I can't void even though I know there is urine in there because my bladder is visually distended and running to the bathroom every couple of hours is not a realistic option anyway. He did suggest straight cathing every couple of hours but, as you know, it carries it's own set of problems with it. So to make a short story very long, the only med that I have tried for "retention" is Flomax but retention is not my issue. Sorry about being so "wordy" but I hope that answers your question.
Doug
 
Hi Bomm:


*How could you stand a full time foley for years? Ouch! I think if you go with the intermittent ones and do the following you will find this painfree. In particular if you've been stuck using a foley.

BTW for what its worth. I had prostate cancer which caused acute uninary retention and had to self cath. I had a radical prostectomy done to (God willing) remove all the cancer. Since then I've had light leakage (Pad level) and have had urinary retention problems. I think the bladder is just pooped out before its empty. Plus I notice when its full but I'm not getting a feeling when I'm not empty. +Small bladder for what its worth. Since cathing it does feel different in some subtle way to be fully empty.

I went with self cathing and that lets me empty the bladder fully which seems to be helping with leakage and I don't need to run back and forth to the bathroom.

What works for me has taken some serious time and more then one question to my Uro and her nurse. I'm just a patient not a doctor or expert of anysort so take this for what its worth.

So - thoughts. First I do this the 6 to 8 times a day and its pretty quick and painless. Getting to that point got confusing. If you look around for information you get all sorts of different comments on whats the right way to do it and which catheter is the best.

Picking a Catheter
First - what catheters are the worst? Dry catheters of all types where your supposed to lubricate them and then wash and reuse them. Anything where your handling the part that goes in the urethera is just an invitation to UTIs (I think) I couldn't ever get these to slide it without serious discomfort. You can cover every inch of these type with lube and still have dry plastic rubbing the urethera dry. Where I live and with the insurance I have I can use (And toss) the one time use catheters and this is the way I would go. I believe the "no touch" types will be of aid in avoiding UTIs.

Size
Get some samples from the Uro or one of the supply companies and get a variety of sizes so you can get the correctly sized ones. If its too big you are going to rub raw the urethera and if your doing it 8 times a day? Its going to suck. So start small and fit yourself. Don't expect a nurse to do this or the doctor to be able to guess. Also check out Coloplast (And others)they now have types that telescope out in size. The ones I use (And like) are the Speedicompact or the Speedicompact set. They start small (1st half is 12 French and the last half is 18 French) This way the small end is the part the goes into the bladder (Easier with the smaller tip)

Shape
There are straight catheters that most people use. If you have some sort of blockage a coude' type can more easily get by the obstruction (In my experience)

Slick
Hydrophilics are catheters where wetness reduces the friction by more then 90% (From what I see and have experienced) I'm not too keen on the ones you add tap water and the potential for UTIs based on funky water. Prelubricated is the way to go in my opinion. I think the goal of not touching the Catheter (Except for the Nozzle end) is made easier by pre lubricated Hydrophilics because I don't think anyone of us can get a grip on this type them being so slippery.

UTIs
Wash your hands every single time you cath. After this clean the head of the penis with a Benzalkonium Chloride antiseptic towelette. Start at the tip (Urethera) and wipe around and away. Hygea is one brand that I've used. It helps keep anything on the skin from being pushed in with the cath. One time use (hydophilics) don't get touched except for the actual nozzle. My opinion is you have a lot less chance to give yourself a UTI if your not handling anything that goes internal. If your sexually active and don't use condoms cath before and right after you have intercourse.

Catheter Insertion
See the attached image. The whole idea is to insert the catheter and have it get into the bladder with the least amount of radical bends. My Uro said hold the penis straight outward. This way you have one gradual turn. If your head is zero degrees hold the penis so that its 90 degrees or at a mild up angle. Don't hold the penis straight up against your belly. *I've seen that suggestion on an educational video and this sharp U turn seems like a surefire way to injure the urethera. There are going to be times that your catheter slides right in and your good to "go" Then there are other times you hit the valve for the bladder and it feels stuck. Never Ever "jab it in." Instead close your eyes and wiggle your toes (No kidding) Force just damages tissue. And if your doing this 8 times a day? I've seen an awful video that has an "expert" saying you should insert the cath until urine flows then when the flow stops to?? push the rest of it in as far in as you can??? <-THIS IS WRONG. The whole idea is to get the cath in just far enough for the eyelets to let all the urine empty out of the bladder. Shoving it in beyond that point is going to stab the top of your bladder or God knows what. Put it in just enough to get flow then maybe a fraction of an inch more (Watching to see if the flow increases) then stop. When the flow stops slowly remove the Cath to see if that restarts urine flow. Repeat this a few times until your sure you got rid of all of the urine remove and trash it.

For incidental leakage its good (I think) to have a pad. Or at least have some handy. I've found that cathing on a regular basis seems to have slows (Stopped?) the small amount of leakage I have experienced. My Uro said that if I'm down to one pad a day thats a win. I think so too.



aac168f18c3e13e77a2a66d542b8595d.jpg
 
Jay said:
Hi Bomm:


*How could you stand a full time foley for years? Ouch! I think if you go with the intermittent ones and do the following you will find this painfree. In particular if you've been stuck using a foley.

BTW for what its worth. I had prostate cancer which caused acute uninary retention and had to self cath. I had a radical prostectomy done to (God willing) remove all the cancer. Since then I've had light leakage (Pad level) and have had urinary retention problems. I think the bladder is just pooped out before its empty. Plus I notice when its full but I'm not getting a feeling when I'm not empty. +Small bladder for what its worth. Since cathing it does feel different in some subtle way to be fully empty.

I went with self cathing and that lets me empty the bladder fully which seems to be helping with leakage and I don't need to run back and forth to the bathroom.

What works for me has taken some serious time and more then one question to my Uro and her nurse. I'm just a patient not a doctor or expert of anysort so take this for what its worth.

So - thoughts. First I do this the 6 to 8 times a day and its pretty quick and painless. Getting to that point got confusing. If you look around for information you get all sorts of different comments on whats the right way to do it and which catheter is the best.

Picking a Catheter
First - what catheters are the worst? Dry catheters of all types where your supposed to lubricate them and then wash and reuse them. Anything where your handling the part that goes in the urethera is just an invitation to UTIs (I think) I couldn't ever get these to slide it without serious discomfort. You can cover every inch of these type with lube and still have dry plastic rubbing the urethera dry. Where I live and with the insurance I have I can use (And toss) the one time use catheters and this is the way I would go. I believe the "no touch" types will be of aid in avoiding UTIs.

Size
Get some samples from the Uro or one of the supply companies and get a variety of sizes so you can get the correctly sized ones. If its too big you are going to rub raw the urethera and if your doing it 8 times a day? Its going to suck. So start small and fit yourself. Don't expect a nurse to do this or the doctor to be able to guess. Also check out Coloplast (And others)they now have types that telescope out in size. The ones I use (And like) are the Speedicompact or the Speedicompact set. They start small (1st half is 12 French and the last half is 18 French) This way the small end is the part the goes into the bladder (Easier with the smaller tip)

Shape
There are straight catheters that most people use. If you have some sort of blockage a coude' type can more easily get by the obstruction (In my experience)

Slick
Hydrophilics are catheters where wetness reduces the friction by more then 90% (From what I see and have experienced) I'm not too keen on the ones you add tap water and the potential for UTIs based on funky water. Prelubricated is the way to go in my opinion. I think the goal of not touching the Catheter (Except for the Nozzle end) is made easier by pre lubricated Hydrophilics because I don't think anyone of us can get a grip on this type them being so slippery.

UTIs
Wash your hands every single time you cath. After this clean the head of the penis with a Benzalkonium Chloride antiseptic towelette. Start at the tip (Urethera) and wipe around and away. Hygea is one brand that I've used. It helps keep anything on the skin from being pushed in with the cath. One time use (hydophilics) don't get touched except for the actual nozzle. My opinion is you have a lot less chance to give yourself a UTI if your not handling anything that goes internal. If your sexually active and don't use condoms cath before and right after you have intercourse.

Catheter Insertion
See the attached image. The whole idea is to insert the catheter and have it get into the bladder with the least amount of radical bends. My Uro said hold the penis straight outward. This way you have one gradual turn. If your head is zero degrees hold the penis so that its 90 degrees or at a mild up angle. Don't hold the penis straight up against your belly. *I've seen that suggestion on an educational video and this sharp U turn seems like a surefire way to injure the urethera. There are going to be times that your catheter slides right in and your good to "go" Then there are other times you hit the valve for the bladder and it feels stuck. Never Ever "jab it in." Instead close your eyes and wiggle your toes (No kidding) Force just damages tissue. And if your doing this 8 times a day? I've seen an awful video that has an "expert" saying you should insert the cath until urine flows then when the flow stops to?? push the rest of it in as far in as you can??? <-THIS IS WRONG. The whole idea is to get the cath in just far enough for the eyelets to let all the urine empty out of the bladder. Shoving it in beyond that point is going to stab the top of your bladder or God knows what. Put it in just enough to get flow then maybe a fraction of an inch more (Watching to see if the flow increases) then stop. When the flow stops slowly remove the Cath to see if that restarts urine flow. Repeat this a few times until your sure you got rid of all of the urine remove and trash it.

For incidental leakage its good (I think) to have a pad. Or at least have some handy. I've found that cathing on a regular basis seems to have slows (Stopped?) the small amount of leakage I have experienced. My Uro said that if I'm down to one pad a day thats a win. I think so too.



aac168f18c3e13e77a2a66d542b8595d.jpg

Hi Jay,

I have been down many paths with all this, botox, all kinds of cathing techniques, I do use Speedi's 16fr and not a jabber( my original post mention that term, but don't go there) either, I didn't like the Foley for sure. The best its been with the Coloplast's. Currently on Myrobetric, and Flomax not sure if its helping or not. Cathing, well I work fulltime and very busy, this regimen of the increased cathing is pushing me off the road so to speak, I know how to do this, but working and trying to do in public bathrooms and under a tight schedule is taking its toll, yes I have the portable Coloplast also.
But your points are well taken.
 
My UroDoc tried having my take an OAB drug (Nothing but side effects) but she switched to have me taking Myrbetriq and that along with regular cathing has so far solved my leakage and OAB issues.

When I had to cath at work I just used one of the stalls. There is a new catheter that is (I think) designed to use at a urinal. If your curious they have been sending out some samples to people who use Catheters so if you want to give something new a try send me your email address by PM (Private Message) and I'll forward it to the company (And they send me more free samples ;-) If anyone else reading this wants to try a sample send me a PM and I'll add you as well.
 
Oh! One trick I don't know if I mentioned for getting a catheter in without jabbing. Close your eyes, lean back and wiggle your toes. A nurse tought me this trick and darned if it doesn't work.
 
You must log in or register to post here.
Back
Top