Best Advice on Starting CIC using Oxybutynin

[crispy1981]

Any CIC veterans willing to offer advice on someone starting CIC for the first time after years condom cath draining?

I think i need to be routine about my intake so my cath sessions can be on a consistent cadence. And also things like observe/adapt to food intake (salty foods will slow down output? etc)?

Anyone willing to share their daily routine/offer tips?

Also, is there any device/patch that can measure bladder volume to take out the guess work of when to empty?

appreciate it!
dan

[crispy1981]

Started the meds today. Hopeful this will work.

Been monitoring my input/output to try and get acquainted with the necessary diligence that this program requires.

Anyone else out there using Oxybutynin and doing CIC?

[McDuff]

You may wind up trying many of the different bladder meds out there, It's like a hit or miss of which one works for you, and is different for everybody.

Probably sooner rather than later, you will find out at what volume your bladder kicks off, and you will pee on yourself. It's like walking up to a cliff edge, but you don't know exactly where the edge is, then it's aaaaaaaahhhhhhhh.

And you will want to pay attention to the color of your pee, it can give you a hint of how your schedule is doing. If it's crystal clear, I may have to pee again in as little as 1/2 an hour, as the color goes towards the golden color, your time extends. If it's dark gold then you definitely need to drink more.

Also, what you drink will change your timing. Water is the best and easiest on your bladder, coffee and carbonated bevs, will shorten your timing. Beer will have you peeing on yourself all night long.

Good luck. I've been doing it 19 years and still miss sometimes, but I don't keep a "real" rigorous schedule either. My bladder has shrunk over the years making it a bit of a challenge.

[crispy1981]

Thanks McDuff! Desperate for some empirical intel on this!
Which med works for you? Did you try Oxybutynin?
My bladder seems to trigger around the 400-450 mark thus far but of course as you suggest how do you know when you're at 400!?
I'm continuing to wear a condom cath as i learn for now...to avoid the leaking when i hit the limit.

Good tip on the urine color.

So after 19 years how do YOU know when to cath?
Also, any tips on what you take along and do you need to plan on being near a bathroom when u leave the house?

Wil try not to abuse your generosity in taking time to share...thank you!

[RollingInParadise]

Same here condom cath for about 28 years then switched to CIC my biggest Takeaway always use no touch catheter closed kits the catheters that are not covered in my opinion are just asking for bacteria. hydrophilic too no stand alone lube.

i only use hollister vapro

just my opinion from personal experience

[SCI-Nurse]

There is no scientific evidence that use of a closed system sterile catheter causes less UTIs than clean self catheterization. The frequency of caths, amount of urine allowed to accumulate in the bladder, and the bladder pressures are much more important factors. (KLD)

[crispy1981]

Day1 complete -
input 2000cc
output 2100cc
leaked in the morning...large amount
later in the day leaked a small amount and a small amount while in bed.
I cathed just before bed (475cc)
morning cath was also 475cc
Summary: Still voiding into condom cath (which i'm still wearing for that reason). Seems i void neurogenically in the ~400-450 range.
So the trick is knowing when to void.
At some point i'll need to learn how to do CIC outside the home. Will need to get a backpack I presume?

Fuentejps - how do you know when to cath and do you watch/measure your intake?

thanks!

[SCI-Nurse]

Try cathing every 4 hours except at night, cath before going to bed and as soon as you awaken. Are you using the long acting or extended release or the one you take 3 c a day? CWO

[crispy1981]

Thanks for the tip CWO. I am only taking 1 tablet/day so must be the long acting?

[crispy1981]

Day 2
input
2340 cc
Cathed 5 x
0800 - 475
11:25 - 375
1600 - 390
2000 - 425 (leaked a tiny bit after exercise)
2200 - 250

[SCI-Nurse]

Try to keep max capacity 400 mls. Exercise May or may not be bladder spasms. Exercise when med is at its highest effectiveness. 2hrs if you are on short acting, take 3 times a day or 2-14 hours if on long acting-take daily usually in am. But if only 1leak with exercising-capacity looks good. CWO

[crispy1981]

Two Tsunamis so far (leaking so much had to shower) - not sure what happened...my bladder filled up much quicker today than prior I mistakenly thought the Oxy already had some efficacy...WRONG.

Both times i didn't make it 4 hours...and bladder had 500 each time. So might have to cath more often...or slow down intake but i was thirsty today...side affect?

thanks,, dan.

[endo_aftermath]

I've been on CIC since the beginning, 11+ years. For a few months I tried to use timed 4hr intervals like the staff tried in rehab. Not very successful and I had to rely on Depends to not be too messy.

My injury is C7, almost complete. One of the few sensations I have below injury is that I can sometimes feel a full bladder. That was not something I could reliably detect soon after leaving rehab.

What I've learned about the timing is that my bladder can get to full enough for leaking in less than an hour or over 10 hours, for the same fluid amount. For how full that is depends on how long it's been since my last Botox treatment (yesterday). So yesterday was full at 200ml. I'm hoping day after tomorrow will be 400ml or better.

[crispy1981]

Endo, sounds like you do also have leaking problems on occasion. Do you wear a drainage system in addition to the CIC program?

[endo_aftermath]

Crispy, I've never used any sort of drainage system other than intermittent catheters. Since I just had the Botox injections, I don't expect any leakage for for a while, probably 5-6 months if I'm on vesicare and myrbetriq. When I do have leakage, it tends to be small volumes so Depends are adequate.
Four days post Botox now, and cath volumes are up to 350ml with no leakage. I expect it to improve for another week or more.

[endo_aftermath]

Botox update. Ten days post and have not leaked a drop, including on two flights on day six, the longest being 8.5 hours airborne, well over ten hours counting boarding and disembarking. Largest cath so far was 600ml on day nine after all day driving. When Botox is working, it is wonderful.

[SCI-Nurse]

How many mg. of oxybutinin are you taking? 30 mg./day is the maximum dose.

Did you have urodynamics studies to determine how much your bladder had shrunk and what it's pressures were before starting CIC? After using reflex voiding for a long time, your bladder can shrink, develop trabeculation, and high pressures. Only urodynamics can determine this. While oxybutinin is the most commonly used anticholenergic for those doing CIC, it may not be enough for someone doing CIC with a high pressure, shrunken bladder. You may also need to take a second anticholenergic in addition to oxybutinin if it does not provide enough capacity and lower your bladder pressures to a safe level (less than 40 cm. H20).

You certainly should not allow your bladder to get larger than what your capacity is measured by urodynamics...in a normal neurogenic bladder this is about 425ml., but yours may be significantly lower. You should also be limiting your fluids to about 2.5 liters or less daily, and cathing every 4-5 hours around the clock. Try taking 1/2 your fluids before noon, and the rest by 6PM, then nothing after that. This may allow you to go 6 hours between caths at night.

(KLD)

[crispy1981]

Hello KLD, thanks for your insight!

1. I'm on 15g Oxybutynin.
2. No Urodynamics were done prior to starting CIC.
2. I was cathing intermittently while on condom cath and my volumes were 400-600.
3. yes, I have mild to moderate trabeculation and 2 diverticula
4. I leaked big time last night in bed so your advice to stop fluids at 6pm will hopefully help avoid this moving forward.  When i cathed this morning after leaking I had 690cc!  Most I've ever recorded so perhaps the Oxy is calming my bladder/allowing it to expand more than before?

I was postulating that if my bladder hits it's capacity it doesn't matter what meds you're on...seems the secret is watching intake as you have described?

Question:  Is it true it could take a month before Oxy has reached it's peak efficacy?

thanks, dan

[SCI-Nurse]

You should be having urodynamics at least every 2 years. You may need to find a neurourologist who knows SCI. 690 ml. is too much to safely have in your bladder; stay under 425 ml. until you get your urodynamics results. No, it does not take a whole month for oxybutinin to "kick in"...more like 3-4 days. You can talk to your urologist about getting the dosage increased. Be careful through...this drug can lead to dry mouth and eyes, and constipation. (KLD)

[SCI-Nurse]

The max dose for Ixybutynin is 30 mg-only SCI patients are approved for this. It is all about the pressures in Urodynamics, not just the capacity. There is a filling pressure and there is a voiding pressure. Due to compliance/stiffness the filling pressure can be too high at a certain capacity but no leak and that would be the recommended cath volume-until the meds are started and you are retested. Or if the filling pressure is not elevated but when the bladder has a contraction-should be a void, that pressure is measured. You can not only go with when you void. Because this is measuring the pressure and looks at the wave form and just like people have EKGs, measurement of b/p and every part of the heart, etc.. the main purpose of checking this is keeping the pressures within range so that the urine will not back up in to the ureters and then the kidneys. The kidneys can sit in urine but after a while kidney damage and need for dialysis can occur. Before UDS, kidney failure was the #1 cause of death for SCI persons. Also if you are reflex or trigger voiding, that pressure is measured. In those with neurogenic detrusor overactivity( overactive) the small capacity bladder is common. A high voiding pressure occurs because the person voids, but instead of the sphincter relaxing-it May “spasm” then the bladder is pushing g pushing and the it can’t empty-that is called DSD ( detrusor sphincter dysynergy)-not working together. Why many leak void, but don’t empty-even though the pressures voiding( bladder) pressure may be normal or even high. So far no success with treating the sphincter so plan is to relax the bladder long enough - at least 4 hours and cath. Fluid management is recommended but not an exact science, especially at night. Kidneys first, then work on getting the schedule and meds right for life. And if your pressures are high, if super high, you will be retested in 4-6 weeks, 3 months at most. And if your pressures are high, then they will be done more frequently than every year or two. Those with the under active bladder-no bladder ir only weak contraction, there issue is different-they may have a “flatline” bladder. Won’t void but will cath and pressures not as high except maybe over time, so they get tested every couple of years. You will see the effects from the medication right away but you need to stay on it for Atleast 2 -3 weeks before increasing dosage. Wear compression hose when up in bc because one common problem is very large urine output at night. 2reasons-dependent fluid in your extremities will “dump” when you lie down in bed with legs parallel and the naturetic hormone, which in some is produced more at night. Fluid restriction is good -6 pm-this is assuming you go to sleep at 10 pmish. Always cath right before your desired sleep time.. Try just small sips and also rinsing mouth out. So you take the in the morning-lunch-so you think it works exactly the same for 24 hours-no med does. They all start working1-2 hours and max somewhere between 6-14 hours then drops off after that. So, don’t go by one night but you might want to move it back or start taking at lunch time. I spent thousands of hours working with my patients on this!! And everyone is a little different. Especially when they had high pressures that we considered “ unsafe” for the kidney. Keep a diary/journal. It is good to look at for patterns. CWO

[crispy1981]

Wow! a lot of moving points to consider!

1.I did not get a UDS done so is there value in getting one done after starting the oxybutynin therapy?
2. Do you think its pragmatic to first concern myself with input/output and correspondingly learn my optimal cadence for CIC? My country boy logic suggests no matter what bladder incontinence inhibiter I use it's most important to ensure I don't fill up to levels of 600-700 (happened twice so far). I need to make sure that doesn't happen and thus far i think monitoring intake (and the other peripheral considerations) is the best place to start?
3. I don't understand this from your input "Try just small sips and also rinsing mouth out. So you take the in the morning-lunch-so you think it works exactly the same for 24 hours-no med does"
4. i do take the oxy at lunch.

I will attach my recent flow report:

[Oddity]

Re: Botox + Medication; that is how I manage my bladder. 200 units of Botox every 6-8 months plus daily Mybetriq 25mg. Was on 300units of Botox, no meds, until Botox effectiveness waned (it isn't completely gone, but only lasts 2-3 months on its own now.) Tried 50mg Mybetriq by itself but that didn't keep pressures low enough. We have found (my Urologist and I) that less of each puts me back to where I used to be with just 300units of Botox. I get a solid 6 months then a couple months of fading effectiveness. The 25mg of Mybetriq alone does almost nothing, neither does 200u Botox, but together they work great, for me.

[SCI-Nurse]

A CMG is done with a very small catheter placed in your bladder which has a transducer at the outside end that measures your bladder pressure as it is filled with water. At the same time, and EMG is done of your anal sphincter which is part of the pubococcygeal muscle that forms the external anal sphincter, and a small balloon catheter is placed in your rectum to measure abdominal pressure.

Botox injections are done during a cystoscopy, and usually 15-20 injections are done in each treatment. It takes about 20 minutes and can be done in an outpatient surgical center or some physician's offices.

There have been several devices over the years designed to measure you bladder volume at home. They are all pretty expensive, and not very easy to use, and some are not very accurate.

Limiting your fluids and taking them on a schedule, as well as scheduled caths is what works for most. (KLD)

[crispy1981]

Thanks KLD - i'm continuing to work on the Intake/outake program if that is the main ingredient to maintain bladder health/avoid high pressures and leaking. So far every 4 hours is too long for me. I had a lot of AD this morning between first and second cath...was in a meeting and had to wait...but luckily no leaking. Working from home is making the switch possible...grateful.

[SCI-Nurse]

This is why you need to have urodynamics done NOW. Find a different urologist who knows SCI if necessary. (KLD)

[crispy1981]

Recent flow report:

[SCI-Nurse]

You need a cystometrogram (CMG) and sphincter EMG. Only the CMG can tell you your bladder pressures and true safe capacity. A flow study is pretty much worthless in SCI. Continue to keep your fluid intake and voiding/cathing diary though. (KLD)