Self Catherization: Issues and Problems

Hi ZD,

Day time cath frequency sounds about right in terms of total bladder volume. With monitoring, you could probably get away with 2 or 3 day times a day as you did before. There is no magic number so you could experiment and see what suits you better in terms of lifetstyle and urgency. You could even experiment with a condom catheter (and leg bag) during the daytime and do CIC only once a day, but again it comes down to a lifestyle and comfort thing. Bottom line is to keep total bladder volume under 400ml to keep it from stretching. 

You mentioned before that you wake up at night and void into the external catheter, but rather it sort of dribbles out on its own due to your incontinence issue. If so, then your bladder probably isn't holding any more than 300ml at any one time based on your first morning cath, so that is good, and in your case the condom catheter seems like a great way to get a full night's sleep. But for others, it's important to keep in mind that if you don't have an incontinence issue, a condom catheter will not work the same way. 

I'm not as familiar with incontinence as with retention issues, but I do know that incontinence is often only temporary after a procedure like TURP or GL. How long has it been since your operation? What does your doc say about the incontinence? Did they talk to you about pelvic floor exercises or other strategies.

Jim

ZD:

TYPO IN MY LAST REPLY: First sentence, second paragraph should have read in part:

"You mentioned before that you do not wake up at night and void into the external catheter..."

Hi Jim, So incontinence can be a blessing in this situation. I bet ZD has better night sleep than us guys who have to get up to empty our bladders.

Hank

Hi Jim, Stretched out bladder can also be a blessing in my case. I only have to get up once during the night to CIC. Compared to my younger brother who has no retention and a PSA of 0.6 ( mine is 3.0), he has to get up every 2 hours to pee.

He probably feels sorry for me that I have to cath, but in a way I feel sorry him too.

Hank

A blessing?  Yes... and no.  I almost always SLEPT THROUGH THE NIGHT with my stretched-out bladder.  OTOH, as I'm sure Jim will agree with, there's also the increased risk of UTIs, due to liquid being allowed to stew overnight.  I more typically get up once to CIC during the night (300-400cc), which works for me.  Other times I wake up and dumpo 500cc, first thing in the morning.  

Hi Hank,

I have a feeling ZD would trade in his urgency and incontinence for getting up once or twice a night.

However, there is a strategy here for uninterrupted sleep which I believe was to suggested to Neil by his nurse although don't think he went along.

And that is wearing a Foley and bag at night and removing it in the morning. The upside would be uninterrupted sleep, at least by a full bladder. No getting up and going to the toilet. No midnight cathing.

The downside would be the possiblity of more UTI's, and of course wearing the Foley. Still, for those really bothered by interrupted sleep, it's something to consider for either every night or on an intermittent basis.

Jim

Hank,

Short term "blessing" maybe, but not so good long term. As "Cartoon" mentioned, more chance of UTI's but equally important is that if you keep your bladder stretched it won't have much of a chance of regaining tone. So again, if sleeping through the night is a very high priority, consider trying a Foley at night and CIC during the day. 

Jim

Jim

Thanks Jim,

You must have read my mind. I was going to ask you if you know if there is something like overnight Foley catheters and you brought it up first. Since I got your blessing, I will look into it further.

I received a box of samples of condom catheters and always wish that I can make use of them.

Hank

Hi cartoon, It is easy for you because your case is not too bad. Your volume is relatively low. Other people have much higher volume. Like me, I can go to bed at 10PM and get up at 2AM and have a total of 600ml. And I am only in the middle range. I used to sleep overnight and I think it was the reason for my kidney flooded problem.

Hank

Hank,

Yes, you put them in yourself at night and take them out in the morning. Personally, I've never had a Foley but I'm guessing that it wouldn't be a big deal anymore given my CIC battled hardened urethra If you try the overnight Foley thing, please report back as to how it works out. I'm actually tempted to try it but not that tempted As to condom catheters, unless you are incontient, the best they can do is save you a trip to the toilet for a natural void but probably would be just as convenient and better to simply have a urinal by the bed.

Jim

Well, Hank, it's that old "volume in, volume out," at least for me.  If I am having a night of wild partying (disclaimer:  that means staying up past my bedtime with my wife, in front of the wood stove, listening to blues and, yes, drinking), then I can fully expect to be up in the "wee hours," emptying out.  On other nights, I stop major intake of fluids in the mid-evening.  And that usually gives me the sleep of the blessed, whether I am deserving of such or not...  :-)

 

Hi cartoon, re :"increased risk of UTIs, due to liquid being allowed to stew overnight. "

Would you elaborate on this please ? I would think it would decrease UTIs since all the urine is allowed to flow out of the bladder into a bag all night long.

Hank

Hank,

Try this (NOT REALLY -- Last night, slept through the night without a rip to the bathroom and my morning void was only around 150ml with almost no PVR. Now how is that? Well, the working theory is that it was the large bag of chips I ate just before bed time, 3.5 portions. My guess is that I retained the fluids because of all that sodium. In fact, my voids are starting to normalize just about now, last one at 300ml. Again, not a suggestion, but just another mention that salt/sodium intake can cause the kidneys to unload unevenly. Sometimes it could work to your advantage in terms of bathroom trips and sometimes not. The "not" would be when you retain during the day and your kidneys unload at night. The healthiest thing would be to cut out the salt/sodium as much as you can. Today, I'm really trying to minimize it.

Jim

Cartoon,

You can't dispute "volume-in, volume out" with some adjustments for food, excercise, etc, however the two don't necessarily have to happen during the same 24 hour cycle. One example is my last post to Hank regarding last night's potato chip binge which made me retain fluids all night because of the high sodium intake. Sounds like you're either on a low sodium diet or perhaps just less sensitive to sodium than I am. 

Jim

Sorry, Hank, I missed the part about that overnight bag.  In that case, your honor, can we strike the last post, please?  :-)    And yes, agreed, re all-night drainage reducing the chance of UTIs...

Hank,

I think I might have been the one to mention "increased risk of UTI's". 

What "Cartoon" said is true. Too much urine stewing around in the bladder can be a breeding ground for UTI's. So, along these lines, an overnight Foley with constant draining would decrease the UTI risk. EXCEPT that an overnight Foley presents its own UTI risk because you have a foreign object in your urethra all night, thus exposing it to more micro trauma and infection than CIC. 

That said, just because statistics say something, doesn't mean it will apply in an individual case. Some people can carry around urine without UTI's and some can't. Some can do CIC (or Foleys) without UTI's and others are more susceptible. 

Jim

Hi Jim,

My problem is not getting up once at night but falling back to sleep afterward. CIC takes longer and the results of the cath seem to make me wide awake thinking. Why is the volume so high ? What did I eat ? What did I drink ? So on... The resulted lack of sleep starts to affect my memory I think. I've started to forget names, mostly unimportant names like athletes or celibrities, but it still bothers me a bit.

Hank

Jim, agreed, that there are also the vagaries of exercise, intake of salty foods (Really, 3.5 servings of chips???   :-) ), and additional stuff our bodies just decide to do.  For example, if I were to intake certain herbal substances (ahem---not that I would, mind you...  :-)  , I would find a need to drink more fluids, which would then cause late night trips to the loo, etc.   And who, me, low salt diet?  Nope, nope, nope.  Cardio is good, and I've always been reasonably disciplined re salt intake, just because.  When paddling on the river (in the past) or hiking on a hot day or slot canyoneering (in the present), then I consciously go for the salt.  But on a day in the studio or veggie, naw, not so much...   Now, time to get ready for yoga class...   Ommmmmmm!  :-)

Hi Jim,

I believe your bag of chips before bed will reduce the night volume. When I have a salty dinner, my night volume and urinary retention go down significantly. However, I am afraid to try that often because I don't know what it would do to my BP.

Hank

3.5 "servings" that's only ONE big bag Chips are really not good for you for plenty of reasons but they really do complement a good sandwhich and soda (also not good!).

Jim

Hank,

Well then, the overnight Foley thing might be a reasonable choice in your case. If it doesn't work out, you can just stop using it.

I don't know much about Foley's but I do believe they come in different FR sizes like our CIC caths as well as straights or coude's and in different materials such as rubber, latex or vinyl. Ideally best to have someone show you how the first time although you tube seems to do a better job than most docs in that regard!

Jim

Hi Hank - I take 2 tylenols after cathing in the middle of the night and it helps me get right back to sleep whereas before I always had trouble. Also that great feeling of an empty bladder helps too. No need to worry about forgetting names until it is your wife's - then time to worry!! Neil

Neil, Hank, All...

There is a school of thought that in some cases it may not be the full bladder that awakens us, but that as we get older we have a tendency to wake up for other reasons during the night, full bladder or not. Then, once we wake up, we just associate the wake up with the full bladder and therefore go and void (or cath).  

Related, the normal bladder can carry 30% more urine during the night than during the day without giving signals. Of course not to many of us have "normal" bladders so that has to be factored in. 

When Neil mentioned "tylenol" it made me wonder if taking something similar or a sleep aide would let me sleep through the night. The concern of course is that if my kidneys just happened then to have an active night I might go into acute retention while something with a normal bladder could handle it.

Jim

OK, Hank, yes the Waking-up-enough-to-cath-hygenically, plus the Why-so-high-a-volume thinking that can follow...  A couple of thoughts:  

(1) I've reduced my prep time and activities to the bare essentials: swab the top (operational area) of Old Peter with alcohol, and then insert SpeediCath, as per JimJames' method (vertical insertion/horizontal zoom in, 45ºdownward pointing for entering prostate).   I do not even wash my hands, as there is no need to:  I never touch the "landing zone," and I never touch the barrel of the cathether.  I know, I know!  But the UTIs I have experienced were either from too much in my bladder (when I wasn't cathing often) or sloppiness/forgetfulness (being mentally elsewhere and forgetting to swab!!!!).  No UTIs as a result of Cartoonman's Quick-n-Easy Method.

The brief time up helps me get back to sleep more easily...

(2)  If you write down the amount cathed at night, you can let go of those numbers, and retrain your noisy brain to SAVE the internal mulling until morning.  And you can work on the self-feedback of allowing yourself to go back to sleep.  E.g., ignore/shut off internal dialogue and focus on your breathing:  air in, air out, etc.  Takes some doing, but I find it's the easiest way back to Slumberland for me.

(3) Someone just mentioned Tylenol.  When sleep is not coming easily, I find that Valerian pills/capsules do the job!  I buy them from the health food store; my experiences with stuff I bought at Rite Aid was way less than satisfactory.  Valerian gives me no hangovers like I hear people get from other "sleeping aids."

Your mileage may vary, of course.  

 

JimJames, 

Why do you think you'd go into "acute retention," if sleeping "under the influence"?  When I take Valerian (see reply to Hank, just posted), I do sleep more heavily, and will sometimes find I'm carrying 500çç in the morning, having cathed before bedtime.  Are you worried about missing the 3:00am cath session and blowing up like a balloon while you sleep?  

Cartoon,

I haven't had an episode of acute retention, or have had to cath for several months now. While I don't know with certainty the exact reason I would go into acute retention from time to time, it seemed to mostly correlate with bladder volume. Going with this train of thought, one reason I may not have gone into acute retention is because over the past few months my bladder has been alerting me it's full at around 250-450ml. If I were to take a sleep aide, my concern might be that I might be that the drug would overide my bladder alert system and I might wake up with a bladder volume of say 600 plus ml and go into acute retention. Of course there are easy ways of testing this and while curious so far not that curious

Jim

Hmmm.  What procedure did you use, to get this much closer to normal?

 

...and yeah, I suppose that's a reasonable concern, the acute retention thingy.  ANd what is that, anyway???  To me, my only truly ACUTE retention episode occured when my prostate shut down my bladder and they drained off 2500cc.  Now, to me, THAT's acute!  

Cartoon,

I think I read about it from some fellow here But seriously, it sometimes does seem a little surreal to me that I have been able to put away the catheters considering from where I started. I do hope it continues, but if not, the cathing really isn't much of a deal anymore and I could easily live with it unless one of the newer procedures tempted me. So far, given their mixed results, I would still not be tempted even if I had to start cathing again.

Jim

Cartoon,

I define "acute retention" as feeling an urge to urinate with a relatively full bladder (350ml or more) and not being able to void at all. Going back say a year, the most that has ever come out of my bladder during one of those episodes was 600ml and usually only 400-450ml. 

In the past, during what I would call the "challenge" phase, where I would try to hold of cathing if at all possible, if the above situation happened, I  would then try walking around for 5-15 minutes which sometimes worked and allowed me a natural void. Or, I would try my "reclined" position where I would lean back on an easy chair and void into a beaker while tapping and/or gently pushing my bladder. That also sometimes worked. 

Looking back, I think the stressed voiding described above had a certain benefit in my rehab as it was bracketed by more agressive cathing, the process sort of like easy days/hard days at the gym.

But about 6 months ago I either outgrew that or frankly just got tired of it (walking around for ten minutes at 3am is not much fun) so since then

if I can't void within say a minute of standing at the toilet, I call that acute retention and pull out the cath. Fortunately that hasn't happened for months.

Jim

Thanks Neil, do you take 2 tylenols just to go back to sleep or to manage pain ? I read that tylenol, though not as bad as ibuprofen or aleve, can cause liver problems ? Hank

WAIT!  So you are saying (probably repeating, and I just don't remember!) that you accomplished this with patience, creativity, and sense of humor and without surgery?  And that somehow the "walking around" thang (which I DO remember you mentioning) is what got things flowing, literally?

Hi Jim, you are right again. (Were you ever wrong ? ). Since I know that I often have high volume at night, I tend to wake up between 2-3AM to pee, even once a while when I did not even pee much. It is becoming a psychological, not physical problem. Hank

Hi Jim, I used to take antihistamine sleep aid and I think it is partly blamed for my now stretched bladder. Hank

OK cartoon, thanks for the suggestions.

1) I also keep it simple. No hand washing, only one alcohol pad. No UTIs yet in 4 months of CIC (fingers crossed).

2) I always write down results right away. Will try the breathing techniques.

3) I take melatonin before bed time but it does not help me falling back to sleep. Maybe I should try another melatonin after the cath ?

Hank

Hi cartoon, When do you take your Valerian ? I bought some but did not take any. The pills are huge and have a strong/strange smell. Hank

About 20-30 minutes before retiring.  As for the smell... "strong/strange" is being too kind!     The smell is DISGUSTING!    I think it works because the body smells it, and says, "I'LL GO TO SLEEP!  I'LL GO TO SLEEP!  JUST DON'T MAKE ME INGEST ANY MORE OF THAT HORRID STUFF!!!!"  

Hi cartoon, Thanks for making me laugh. Hank

Antihistamine's are definitely contra indicated for retention issues. Even worse are decongestants. Add them together in a cold forumulation and you have a recipe for disaster. Fortunately, with CIC, you can take 'em all if you need them. But to stay on the safe side I would set an alarm clock for middle of the night relief  if I was really drugged out. 

Jim

1) v

2) v

3) Nope.  From what I've read about melatonin, and the bottles say this: one per night, only.  Why?  I dunno, but that's why I switched to Valerian...

LAUGH???  I was SERIOUS!!!  

Gee, JimJames, it makes me glad I stayed with the illegal drugs back in the Sixties.  These sound AWFUL!     Well, Sixities, Seventies, Eighties...

Yes, but the sense of humor was intermittent like the cathing Others have also reported the "walking around thang" as an aide for natural urination when it just won't happen by itself. I found it useful for awhile but now would rather either just stand up and go or pull out the catheter. Why walk around for ten minutes in the middle of the night when I can self cath in 60 seconds? As to why walking around helps, who knows. Maybe it's that the reverse (sitting or lying around) inhibits the void reflex. I long since gave up trying to ask urologists questions like this because the sad reality is that in most cases if it's not part of their exam/treatment protocol they just aren't very interested or frankly informed.

Jim

Hi Cartoon, Have you ever tried  cialis? If yes, did you find a place that sells them at a reasonable price ? these pills are very expensive?

Thanks,

No Frank, I haven't.  And jokes aside, the side effect possibilities leave me less than inclined to try it.... Especially because I (thankfully) have not experienced ED...

"Cialis (tadalafil) is an oral drug called a phosphodiesterase inhibitor used for treating impotence (erectile dysfunction, or ED). Common side effects of Cialis include flushing (redness or warmth of the face, neck, or chest), headaches, stomach upset, diarrhea, flu-like symptoms (such as stuffy nose, sneezing, or sore throat), memory problems, muscle or back pain, nausea, low blood pressure, blurred vision and changes in color vision, abnormal ejaculation, and prolonged erections (priapism)." 

Here is the side effect profile for aspirin:

" Major Side Effects

You should check with your doctor immediately if any of these side effects occur when taking aspirin:Incidence not known:Abdominal or stomach pain, cramping, or burning

black, tarry stools

bloody or cloudy urine

change in consciousness

chest pain or discomfort

confusion

constipation

convulsions, severe or continuing

dark urine

decreased frequency or amount of urine

diarrhea

difficult breathing

drowsiness

fainting

fast breathing

feeling that something terrible will happen

fever

general tiredness and weakness

greatly decreased frequency of urination or amount of urine

headache

heartburn

increased thirst

indigestion

irregular heartbeat

light-colored stools

loss of appetite

loss of consciousness

lower back or side pain

muscle cramping and weakness

muscle tremors

nausea or vomiting

nervousness

numbness or tingling in the hands, feet, or lips

panic

rapid, deep breathing

restlessness

seizures

skin rash

stomach cramps

swelling of the face, fingers, or lower legs

unusual bleeding or bruising

unusual tiredness or weakness

upper right abdominal or stomach

vomiting of blood or material that looks like coffee grounds

weakness or heaviness of the legs

weight gain

yellow eyes and skin"

-- Jim

HAH!  Yeah, and that's why I don't take aspirin either!  

Hi Jim,  one of the side effect from cialis  is sudden cardiac arrest.

This scares me,have you heard about this?

frank,

Hi, I just found out cialis can cause sudden cardiac arrest.Thsi scares me?

frank

Frank,

The FDA requires all possible side effects to be listed for a drug no matter how remote. That's why I listed the side effects of a common drug aspirin as a comparison. I believe the "sudden cardiac arrest" risk is for people who have certain pre-existing heart conditions or if they mix Cialis with Nitrate drugs. Drugs of this class such as Viagra, Levitra, etc, have a pretty good history so if your doctor clears you for daily Cialis I woudn't worry too much.

Jim

Hi frank, Someone posted on another thread in this forum about buying cialis from canada being much cheaper than from US. Hank

Hi Jim,

Your bag of chips before bed to reduce the night volume theory may have some credence. Last night I had salty chinese for dinner at 5PM. Went to bed at 10, woke up at 3 to CIC, NV was 100, CV was 250 -> TV = 350ml which is way below the average of 600ml (NV~200, CV~400). In the morning I did not cath but noticed NV was higher than usual. It means that the major urine production was shifted later in time.

I wonder if it is also better for the kidney to spread out urine production overnight like this (with more salty dinner) instead of pumping every thing out during the first few hours of bedtime (with low salt dinner). Except for people with high BP issue, it may pay to eat more salt for dinner or a salty snack before bedtime ?

Hank

 Hi Jim - it is strange that during the day my NVs are about 200ml and my CVs are about 150ml with a lot of trouble to get through my constriction. But at night it is just the reverse. Last night was typical: I cathed at 11pm with 250ml NV and 125ml CV and it took 5 whole minutes to get through the constriction. Yet at 3 am my NV was 150ml and CV was 300ml and I got through in less than a minute! At 7 am the same thing.

My continence nurse said there is a hormone called ADH (Anti-Diuretic Hormone) that normally tells the kidneys to produce less pee duirng the night. But as we get older less of this hormone is produced so more pee is dumped into the bladder at night. She said there is a simple blood/urine test for this hormone we can take and there are supplements to help out if we are deficient but only if we are deficient. She said that PBOO will aggravate this problem due to damage to the kidneys which then interferes with the function of ADH in retaining fluid during the night. I did confirm what she said and have scheduled a test for this hormone. Just one more knob to play with! Take care. Neil

I guess the down-regulation of ADH as we age is Nature's way of accelerating our demise by making sure we get less sleep! Sometimes Nature is our ally and sometimes not so much.

This hormone sounds interesting. I am a real wet bed at night. 

Neil,

Yes, nocturia often gets worse as we get older, and it has nothing to do with LUTs as our doctors (and the IPSS score) would have us believe. Other than lifestyle changes like compression stockings, fluid intake, sodium intake, afternoon naps -- there are several drugs like the one on your nurse is referring to. Diuretics can also help and as I have mentioned coffee timed properly sometimes works well for me. 

As to your night time cath times vs day, I would have said before that it's a bladder pressure/sphincter issue (ie the more in the bladder the looser the spincter) but your IR seems to have pegged the problem as urethral obstruction caused by your enlarged prostate distal to the internal sphicter. So maybe more bladder volume somehow relieves the pressure? Or maybe your prostate is less inflamed at night? Really don't know. Hopefully it's a precurssor for easier cathing both day and night.

Jim

 

Hi Neil, I looked up this ADH treatment. It basically does the same thing as eating salty foods for dinner, in which it retains water and raises blood pressure as a result. I would not take it due to other additional side effects. I'll just have a bag of chip instead . Hank

Hi Jim and Hank - I think my stress during the day causes me to clamp down more on the urethra using the whole suite of muscles in that region. So it just makes it harder to get the catheter through. A few nights ago I did not cath before bed at 11 pm and just waited for my first round of REM sleep to complete at around 12:30am. Then I got up and cathed and it was quite easy-relatively speaking. I think the sleep just helped to relax all those muscle including that big sphincter muscle that runs  most the length of the urethra. Anyway - I guess we all have to find our niche of comfort.

Regarding ADH - I am with you Hank. The supplement mentioned is L-arginine which is over the counter but if we are not careful we can retain too much fluid which as you say has terrible consequences. It needs to be carefully regulated so forget it - I would rather pee too much and make up the difference by drinking more which is an easy way to regulate it. But at least it is not so much a mystery. Because of the down-regulation of this hormone as we age wwe also pee more duirng the day as well but then we are awake and can void more times. But at night it accumulates and either we awake and deal with it or hold it in and face retention problems in the morning - albeit well-rested!

Neil

Hank,

As you know I can verify that the bag-of-chips method produces a good night's sleep although perhaps at the expense of higher blood pressure, a larger waist and therefore perhaps a shorter life span. But I dare say it goes much better with a roast beef sandwhich and beer than ADH  

If retention is the problem, and it often is esp as we get older, try going the other way with a low sodium diet and/or play around with diuretics be it rx dieuretics of caffeine. They will bring your blood pressure down not up. 

Jim

So Neil, we are all waiting for the IQ Cath test drive

Spoke to one of their reps and says it worked better for him than a Coude, so we have objectivity here. 

But seriously, from the picture of the cath, the tip looks very benign the question being will the flex design slip through your compressed urethra and sphincter or just bend like a noodle.

Jim

Hi Jim - I know - I have the samples right here but didn't want to rock the boat and cause any bleeding again before my biopsy. I keep putting it off using the weather as an excuse for the long trip to Houston but the IR doctor in Houston and my wife both accuse me of the old head-in-the-sand procrastination. I guess I don't want any bad news but I have to go and get it tested. I am so much better at giving other people advice! I do hope none of you ever have this kind of scare.

When do you have your biopsy?

I have already used IQ. I prefer IQ 12 to IQ14. No bleeding at all, but somehow more difficult pulling out than straight (no coude) Speedicath 14.

Sometime before the end of the month I expect. I use Speedicaths 14FR coude tip and am happy with them. When I tried 12s they bunched up in my urethra in front of the external sphincter and caused a lot of bleeding so this is why I am holding off trying them until after my biopsy so I don't have any more excuses.

Do you think you will stay with the IQ caths over the Speedicaths?

Thanks.

I thought you were still bleeding and maybe the IQ's would be better. But if it's going in better with no blood that's another story. 

Jim

Neil, funnily enough my preferred are Speedicaths Compact. I started with them and I continue. I didn't like regular (not compact) Coloplast caths but I did like IQ 12. My situation is special inasmuch as I have had TURP so entering the bladder is easy (still, Speedicaths can make me bleed sometimes and IQ don't). I like the compact because of its size (easy to carry, easy to use) and maybe this easiness makes me stick to them, but I will use IQ 12 too. Just for a change. I am in France. It turned out they have them all. Jim was right: IQ are everywhere in Europe. I was told they were produced in Germany. Take care ZD

I haven't had any bleeding for a couple of weeks now and my leukocytes are zero. Still takes me a few minutes to finally get in so I am anxious to try the IQs as well as some Speedicath 16fr coudes but not till after my biopsy.

There have been 3 turning points in my climb up the learning curve:

1. Your dive bomb technique which took the guess work out of how to start the catheter. My continence nurse was very impressed and said she would "market it to her customers".

2. Adding lubricating gel to my hydrophilic speedicaths which ended the burning and severe discomfort in getting past the external sphincter. I think this was responsible for my fever in Dec.

3. Learning about my urethral constriction just forward of the internal sphincter which was the cause of my difficulty in getting into the bladder and not the internal sphincter itself. I still have this problem but at least now I understand the cause.

Take care

Neil

Hi ,

I’ve been lurking on your forum for some time picking up on the words of wisdom with regard to self catheterisation from Jim James and others. Decided it was finally time to join in when  I saw the Manfred Sauer IQ tip catheters mentioned and felt I might have something to contribute.

My background.  69 years old. I’ve spent the best part of a year recovering from a fall at a climbing wall which resulted in a broken back and left ankle and wrist. When I had had all the surgery done and they removed the indwelling catheter  my bladder did not function and I was introduced to  intermittent self catheterisation. The only catheters I could get in were the IQ tip ones. I surmised that I must have had some problem with my urinary tract prior to my injury but had not seen about it.

When I was transferred from the spinal unit to my local hospital after about 6 weeks the spinal unit only gave me a few catheters with me. The local hospital did not stock them and tried to persuade me that the catheters that they stocked were just as easy to introduce. I couldn’t get them in at all.

The upshot of this was that they put me back on an indwelling catheter while they ordered some IQ tips. On coming off the indwelling catheter I found I could pee again but still had  residual volumes of just over 100ml. Over the next few months I continued to self catheterise 4 times a day as I had been doing in the spinal unit  then reduced to 3 times per day.

A series of urinary tract infections in September/ October left me effectively unable to pee again.  I increased catheterisation to 6 times a day in order to try to match my urinary output of 2000 – 2500ml per day.  I have continued on 6 catheters per day since then .

Before the infections I could void approximately 65 -75% naturally and cath the rest.

Since then the order is roughly reversed. Residual volumes now about 250ml.

I would like to be like Jim James and restrict bladder contents to 400ml but my kidneys don’t  play along with this and often deposit larger volumes.

Sorry , I’ve gone on too long but I can thoroughly recommend the Manfred Sauer IQ tips although they are not very easily portable. The nurse from the spinal unit showed me a new Coloplast Speedicath Flex the other day which has a similar tip. Haven’t tried it yet. Don’t know if you have them in the States yet.

Thanks for all the advice

Scotty

Hi Scottie,

Thanks for sharing your story. Have they made efforts to identify the cause of your retention be it spinal chord nerve damage from the fall, an enlarged prostate, lack of bladder tone, etc? Related tests and procedures are the DRE, ultrasounds, cyscoscopy, MRI and urodynamics. Urodynamics, preferably video urodynamics, is  important to rule in/out any nerve damage you may have incurred.

You should be under 400ml most of the time if your're cathing 6x/day but I realize the kidneys sometimes have a will of their own. How much over do you go and how often? Sometimes a detailed input/output log is very helpful to tweak things so the volumes are more consistent. 

The IQ's are not readily available in the U.S. and the Coloplast Flex is "coming" per their web site. Let us know if/when you try them. Are the IQ's you're using hydrophillic or do they require a lube? As an alternative, you might also want to try the Speedicath Hydophillic. I use the coude tip model in 12Fr but started with 14F. You would probably want to start with the coude tip assuming your prostate is enlarged.

Good luck with the cathing and try and if they haven't already, try and get some of the testing and imaging done.

Jim

Hi Jimjames,

Thanks for the prompt reply.

Have been trying to find out what has caused retention but  it could be a number of things or most likely a combination. I was having some difficulty with peeing before my accident - nocturia, frequency especially in cold weather but hadn’t got round to seeing about it. I’ve now had a cystoscopy and urodynamics but have yet to see the consultant. Initial reports show  no major abnormalities - slightly enlarged prostate with  iintervesical projection. From the urodynamics- “your problem with emptying may be due to a relatively low squeeze of the bladder and poorly sustained contractions”

What’s a DRE?

I’ve kept a voiding diary since  last March  and have only really been over 500ml two or three times but volumes have been increasing recently. I had one incident in July when after taking a drug called furosamide to try to compensate for nocturia I must have had about a litre. And this week when I returned from a hospital visit  I had 700ml. This seemed very strange since I was only away from the house 3 hours and I cathed before leaving  after my usual breakfast.

The IQ’s come in two types. The one I use is in a lubricating gel and the other has a hydrophilic coating.

The nurse wasn’t sure if the Coloplast Flex was available here yet but it looks very neat.

Thanks again for answering so quickly . Apologies if I’ve already posted elsewhere in the forum. I’m finding it difficult to navigate.

Scotty

 

Hi Jimjames,

Thanks for the prompt reply.

Have been trying to find out what has caused retention but  it could be a number of things or most likely a combination. I was having some difficulty with peeing before my accident - nocturia, frequency especially in cold weather but hadn’t got round to seeing about it. I’ve now had a cystoscopy and urodynamics but have yet to see the consultant. Initial reports show  no major abnormalities - slightly enlarged prostate with  iintervesical projection. From the urodynamics- “your problem with emptying may be due to a relatively low squeeze of the bladder and poorly sustained contractions”What’s a DRE?

I’ve kept a voiding diary since  last March  and have only really been over 500ml two or three times but volumes have been increasing . I had one incident in July when after taking a drug called furosamide to try to compensate for nocturia I must have had about a litre. And this week when I returned from a hospital visit  I had 700ml. This seemed very strange since I was only away from the house 3 hours and I cathed before leaving  after my usual breakfast.

The IQ’s come in two types. The one I use is in a lubricating gel and the other has a hydrophilic coating.

The nurse wasn’t sure if the Coloplast Flex was available here yet but it looks very neat.

Thanks again for answering so quickly . Apologies if I’ve already posted elsewhere in the forum. I’m finding it difficult to navigate.

Scotty

 

Hi Scottie,

Yes, very difficult to navigate. If it weren't for the email notifications I doubt if I could even find the forum

So from urodynamics sounds like no nerve damage and lack of bladder tone with sub par detrussor functionality. CIC should be helpful in that regard, it was with me as over a 3 year period I was able to go from near acute retention and cathing 6x/day to only very occasional cathing now with normal retention for my age. 

I understand the theory behind Furosamide (lasix) which is a diuretic. The idea I believe is to force urination during the day so you will void less at night. Is that what the doc says? Unfortunatly, it doesn't seem to be doing that, in fact it seems to be doing the oppositive, if your night time voids have increased. Are you still on it?  How many times do you get up at night on Furrosamide and how many times did you get up without it. Also what is your total night time output on Furosamide and what was it without it? It could be when you take the drug or it could be the drug itself but if it's doing more harm than good, better to be off it. There are other strategies for nocturia. The drug also could have accounted for your 700ml output, assuming you were on it then although sometimes the kidneys just have their way with things especially the first year or so. 

Jim

 

Hi Jimjames,

You seem to have grasped my situation very quickly.

What lets you say from the urodynamics that there is no nerve damage?

How do they distinguish between nerve damage and poor muscle tone?

The idea of the furosamide was, I think, a big mistake. As you say the idea was to promote day time urination rather than nocturia. I stopped the furosamide, with the doctors blessing, as soon as there was the very large void in July.

Like you I think I was very lucky to start voiding naturally again on changing hospitals and them putting in an indwelling catheter in the absence of catheters with IQ tips. Unfortunately I didn't realise how lucky I had been at the time. 

Originally I had been put on another drug called distigmine bromide when in the spinal unit. This was to help the nerve supply and encourage the detrusor to push. When I was aware enough to read the contra indications warnings I noticed it should not be used for anyone with bladder outlet obstruction. At that time I did not know if I had a bladder outlet obstruction. I was also on a higher than recommended dosage. When I went into retention in October this was also stopped.Since then I've been on 6 catheters a day and this usually allows the total voids to remain below 400ml but residual volumes have crept up. As I mentioned in my previous post Ihad a total void of about 700ml on Wednesday on returning from hospital. This happened again last night and again this afternoon. I wonder if I'm developing an infection. I've got no other symptoms however. Touch wood.

I tried the Coloplast flexi this aftrenoon. Unfortunately I was unsuccessful. It's going to take a new technique for me. The tube is very flexible and you feed it i while it's protected by an even more flexible sleeve. I feel as if I need a third hand.

Hi jimjames,

Just worked out  the meaning of DRE without Mr Google

Yes I've had a few of these.

Scottie

Hi Scottie,

Through the placement of sensors, a proper urodynamic study evaluates both nerve and muscle function and can help pinpoint where a voiding problem lies. I assume that was done in your case -- it should have given your history --  but you could always double check with your doctor and make sure.

So what is the status of your nocturia now that you're off the furosamide?

What did the doctor say about the contra indications to DG per your obstruction? Was he aware and not concerned or just didn't know? The reason is that you have to be careful with too much detrussor pressure with an obstruction although I really don't know exactly what the cut off point for "too much" is.

You are bound to go over 400ml from time to time. Keeping a fluid input/output log can sometimes help find the cause or at least a pattern. If it does the cath schedule can be adjusted. If you have some money to burn there are some portable bladder scanners out there for 5-10K that can take the guesswork out of things. Been looking into them myself. 

Speaking of a "third hand" there is an inexpensive rubber device I recently stumbled upon that will hold your penis in a taught position freeing up both hands for self cathing. 

Jim

 

Hi Scottie, Do you have a reason to consume so much liquid ? More liquid -> more retention. Hank

Hi jimjames,

Will ask urologist when I see him in March but as far as I was aware, and as it was explained to me by the nurse, there was just a pressure sensor in my bladder and another in my rectum to measure abdominal pressure. The machine worked out the difference between the two pressures.

The volume of urine in the night is pretty unpredictable so now I've got into the habit of waking up about 3 am and voiding and catheterizing. If the void is reasonably large I can get a good sleep till mornng.

When I was on the distigmine I tended to wake about every hour but then I only needed to pee rather than catheterise as well. Think it became a psychological thing rather than a physical thing but it's difficult to judge urgency when you've just woken in the middle of the night,

I didn't read the contra indications till I was at my local hospital. The doctor there would not query the prescription issued by the spinal unit.

It's difficult to see any pattern. There's certainly not a daily one. It's as if my body doesn't make minor adjustments but lurches from side to side of a mean. A scanner would be the only real way to know but don't think I've got that kind of money to spend on one.

Third hand. I think I saw something like that in a catalogue too. Maybe I could afford one of these.

Thanks again for the reply.

Scottie

Hi Hank,

I don't really drink very much liquid - only about 1.5- 2l my kidneys however seem to produce about 2-2.5l. I suppose the rest must come from food. I've kept a log from last March sometimes more religiously than others and the difference has always been reasonably consistent. Seems a big difference to me. Before my accident I used to drink more so I've cut back but still want to stay hydrated to avoid eg kidney stones.

Scottie

Doctors tend not to contradict doctors in the same hospital, if that was the case. Not sure if you really need a scanner since you need cathing 6x/day although it could provide some good info for tweaking cath schedule as well as providing interesting data to help you understand filling patterns. My interest in a scanner is that I sometimes go for weeks without cathing and would therefore prefer to check my residuals from time to time without cathing. I am also looking into used units. The ones that seem more interesting are the ones that offer a real ultrasound image as opposed to the ones -- verathon makes them -- that just offer a symbol and numeric calculation. The latter units woud have to be calibrated because you really can't see the bladder while the former you could at least ball park your retention by looking at the image even if it wasn't 100% accurate.

Jim

Hi Scotttie,

I've gotten similar numbers, so food seems to be where the xtra is coming from. But I also tend to run a little on the dehydrated side unless I up the fluid.  In my 1.5-2L I'm counting coffee, tea, beer, soup, etc, as well as water, which I assume you are doing as well. Do you check urine color and/or dip sticks for dehydration? I tend to run a little dehydrated on 1.5-2L so if I remember I will take in more.

Jim

Sometimes orange usually in the morning when there is not very much.

While i was still peeing better the urine in the middle of the night was virtually colourless.

My theory then was that the large night time voids were due to the kidneys processing blood that had pooled in my ankle or that the blood was doing a cleaning job on the ankle overnight.

Scottie

First morning urine is always darker. If motivated, you might want to get some Siemiens Multistix 10 SG Reagent Strips. They are the same ones many urolgists use for quick urinalysis. 

I don't know about blood pooling in your ankle, but one of the causes of excessive night time urination (nocturia) is fluid pooling in the lower extremities. This is pretty common as we get older. Some nocturia strategies therefore include compression stockings, afternoon naps, lying down with legs raised, as well as diet and drug approches. I find for example that if I have a high sodium meal (sodium/salt causes fluid retention) before bed time that I sometimes will sleep through the night however not a very healthy approach and another downside might be retention.

Jim

Hi Scottie, Like Jim, I try to keep my total liquid intake within a range of 1.5-2.0L, including foods, and it seems to work out better for me. Sure, once a while I would take it above 2.0L just to flush out my plumbing. As far as too much night time volume, I tested it out and it seems most of it comes from the food we eat. We tend to eat more wet foods later in the day and the foods won't get to your colon (where water can be extracted) until night time (due to digestive transit time). Also, at night is when the kidneys get the most blood flow and therefore can work harder.

Like you, I also cath once at around 2-3AM just to make sure my bladder is not over flow and my kidney is covered. Hank

It sure seems the kidneys have a mind of their own but like with our partners, I sometimes think it's just we don't understand what they're thinking!

Take for example, not my usual fluid intake but days of "flushing" the system with xtra fluids. Sometimes if I start early enough, and mix in several cups of coffee (a diuretic) I will start voiding almost hourly starting at 12-1PM with each void around 300ml. So, by bedtime, I've pretty much voided close to 3 liters and might even sleep through the night. Othertimes, with that same fluid intake, I might not start the hourly voiding until 4PM which means I'm going to be up several times that night. 

So what's the difference here? Probably the difference in activity level, caffeine consumption and sodium intake, as well as bathroom access. As to the latter, at home I tend to void as soon as I feel the urge while walking around outside not only do I not feel the urge as early but I might delay a little until I find a bathroom. One way around this is to set a voiding schedule of say every 2-3 hours where you will seek a bathroom and try for a void even if you don't feel it. 

Jim

Anoher related thought/observation is that I sometimes get the idea that the kidneys sometimes "wait" to a certain extent until the bladder empties before they unload. In other words, if you try and void more often then you will get more volume out earlier than if you wait longer between times. The end result might mean a better night's sleep. Nothing scientfic here btw.

Jim

Hi Jim, I agree with you there on so many things can affect the kidneys behavior. It is why it can be so confusing. However, if we can get a hold of certain input -> output patterns, it might make our life (urinary) better.

Hank

Hi Jim,

" ... kidneys sometimes "wait" to a certain extent until the bladder empties before they unload."

I found this to be true when my bladder is almost full. One time I urinated about 250ml. 30 minutes later, I was able to unload another 250ml. My thought was "OMG, where is all this coming from from ?" Its seems the kidneys have a reserve reservoir somewher ready to dump as soon as there is room in the bladder.

Hank