CIC suddenly stopped working after initial 10 days of success
Posted , 15 users are following.
I started CIC on Aug. 8, 2018, and things went well until Sat., Aug. 18, when things "shut down." I couldn't urinate, and nothing came out when I catheterized. I tried two times on Sat., and once Sun. morning before I went to the ER. I keep the catheter very clean, and had no other symptoms.
The ER Dr. put in a balloon catheter, and got over 600cc of urine. I kept that in until Aug. 31, when a urology tech. removed it, and I resumed CIC.
I have had no reoccurrence of the problem, but I am worried about the possibility.
Does anyone have any suggestions as to what might have caused the problem?
1 like, 86 replies
TKM charles11940
Posted
Hope this helps,
Thomas
hank1953 TKM
Posted
bernard48654 hank1953
Posted
What is the link with trapped gas ??. I get a lot of this and it causes all sorts of problems.
Regards Bernard.
charles11940 TKM
Posted
Thanks, Thomas,
The catheter wasn't clogged, as I have an earwax syringe I use to flush it out after each use; and I haven't had any blood clots or stone fragments. It was all the way in, with only about 2-3" remaining. It was well lubricated, and I twisted it and repositioned the last 2-3" numerous times, with no luck. This happened on five separate occasions over about 16 hours. By then, my back teeth were floating, and I went into the ER.
I've been back to doing CIC for almost a week, and no problems so far. I'll ask my urologist about using a larger size. I've been using a "14 Fr/Ch Coude tip". I'm on two Flomax a day, and haven't missed any doses, and don't use antihistamines.
hank1953 bernard48654
Posted
Bernard, I've read about it before but mostly from personal experience. Several times I had almost complete urinary blockage from trapped gasses, one as recent as last week. Hank
Tucsonjj TKM
Posted
Jeeze, that post was scary... hey, I am only a few days into CIC, doing great, what a relief... but... I find that now my non-cath flow is VERY weak, between the 2X/day times I cath... normal?
Also, you seem very knowledgeable... my Uro Doc recommended green light, didn't discuss any alternatives... which I find troubling... I have not had a MRI... and am wondering if Rezum, Urolift or other procedure may be better for me... even just a Bladder neck procedure... or just to keep up the CIC, I am getting pretty comfortable with it.
I am planning on seeing another Uro-Doc for a second opinion. Thanks!
TKM Tucsonjj
Posted
Tucson,
Jim James has started some discussions in this web site suggesting doing CIC temporarily or indefinitely to deal with BPH. It is a way avoid drugs or surgery while protecting your bladder and kidneys.
Your flow is probably weaker because your bladder is not so full since your cathing. When your bladder is very full there is more pressure to push the urine out through an obstruction, sometimes it is called "overflow incontinence". If your not taking Flomax (Tamsulosin) you might consider asking your doctor for a prescription. It will increase the flow for natural voids.
I started CIC 3 months ago and was doing some natural voiding at first while on Flomax. I stopped the Flomax gradually over a couple weeks, and cannot naturally void now except about 30ml occasionaly. Of course that means I have to use the catheter every time now, about 5 times per day, but it is longer between voids because you empty completely each time. This means cathing sometimes in the middle of the night and while away from home, which can be a problem.
Your doc probably recommends Green light because that is his specialty. Most docs will not discuss other procedures they don't do. What you do depends on you situation. How large is your prostate, do you have an enlarged median lobe and is it obstructive, do you want to try the drugs, and are they effective, do you want to avoid retro grade ejaculation. Many people want to start with a procedure less invasive like PAE, Urolift, or Rezum, because other more invasive procedures can be done afterwards if they don't help. I think Green light is high on the invasive list.
Regards,
Thomas
Tucsonjj TKM
Posted
thanks for the response... that is what concerns me, I don't think my UroDoc knows how large my prostate is, or if I have an enlarged median lobe or if it is obstructive... don't they have to do tests for that?? His assistant (PA) is the only one to manually feel my prostate... I DID do a uroflow, and they said my bladder still functioned... I am thinking that this is sort of rushing me into something, with no discussion of alternatives...
I was on 5mg hytrin in my 30's, it worked well and I had no side effects... recently I tried the generic version Terazosin, only 1mg and had REALLY bad side effects, super rapid heart rate, high BP, anxiety and a feeling of being very ill (malaise?)... had to stop... I tried Flowmax long ago and had some nasty side effects too ( I am very sensitive to meds)... but only tried a few days as I remember...
I think I can go a long time on CIC... getting used to it fast... just turning 62, so still a long way to Medicare... the Rezume sounds interesting... will ask the 2nd opinion Doc I am going to see soon (and probably dump the current Doc)... thx again!
jimjames Tucsonjj
Posted
Do not worry about your non cath flow while your do CIC. In short, you want to keep your total bladder volume under 400ml. Total bladder volume is the sum of your CIC volume and any natural void just preceding it. If total bladder volume is over 400ml then just cath more often. This will protect both your bladder and kidneys and it can potentially even rehab your bladder so that it will start to regain more elasticity. With CIC there is no rush to do a surgery and you may even find it a long term solution as some here, including myself have.
Jim
Tucsonjj jimjames
Posted
Thanks! I am putting out around est 600ml+ at night, just today did a morning cath, around 500ml est... so will see... hope 2X is sufficient... will go to #x if necessary... getting used to it, but that doesn't mean I enjoy it! ;-)
Trying to drink less too... but still be reasonable and not dehydrate... still have some abdominal distension with no pain or reflux... I think it is just excess fluid waiting to be processed... so maybe I need to cath more... we'll see...
Motto jimjames
Posted
Jim: can you tell me more about that? CIC as a "long term solution"? I am getting ready for some procedure. My Uro recommended a TURP because that's what he does. No imaging, no testing just TURP.
Should I ask him for a script for a CIC instead?
He doubled my Flomax scrip and I found it intolerable so I quit it. I'm doing better off it. I'd like to avoid surgery. Is CIC a possibility?
jimjames Motto
Posted
Hi Moto,
Over 4 years ago my urologist wanted to do TURP on me as well. Long story short, I opted for CIC instead and never regretted the decision. TURP is for some people but keep in mind that there is a very good chance you will end up with retro (dry) ejaculations. There are some newer and less invasive procedures where that is not as much a problem.
CIC will give you the opportunity to take your time while making a decision, or as a waiting strategy until perhaps better procedures come along. And yes, it can be a long term solution like it is with me and some others here. And if you're lucky, CIC can even rehab your bladder to the extent that you might be able to void normally again but depends on lots of factors. Bottom line is that CIC is a reasonable alternative to surgery and will protect both your bladder and kidneys as well as any surgery.
No harm in trying it out just know that while most people take to it real well, some need a few weeks to get used to it. I was in the latter group and frankly the first few weeks were very uncomfortable but after awhile it became as routine and painless as brushing my teeth.
A good catheter to start out with is Coloplast's Speedicath with the Coude tip in size FR14.
If you do go ahead there are a number of us here who can help you along the way.
Jim
bob31550 TKM
Posted
Oddly, my bladder only had 397ml after nearly 7 hours of not voiding. Normally, my kidneys produce up to 2 liters in 8 or 9 hours at night (nocturnia apparently)
bob31550 TKM
Posted
The cathing nurse said my anxiety made the cathing difficult and paintful. I was screaming.
Would an anti-anxiety injection been helpful?
hank1953 charles11940
Posted
charles11940 hank1953
Posted
Thanks, Hank,
I'll try a size 16. I've been using a "14 Fr/Ch Coude tip. Question: is there a good commercial source for catheters?
hank1953 charles11940
Posted
charles11940 hank1953
Posted
Thanks. I looked online and was a bit overwhelmed by the number of choices. I'll talk to my urologist and see what he thinks.
Tucsonjj charles11940
Posted
In my case, the bladder neck (last part to get through) was/is the most resistance... I take a few deep breaths and put on a gentle but firm push.
hank1953 Tucsonjj
Posted
If urine comes out immediately after the catheter passed the resistance, the obstruction is at the bladder neck. If it takes few more cm or inches, the obstruction is somewhere else before. In my case, it's at the external sphincter, way before the bladder, right after the urethral bend. Hank
jimjames charles11940
Posted
Jim
jimjames Tucsonjj
Posted
Jim
Tucsonjj jimjames
Posted
Thanks! I ordered a Coloplast Plus 16 just to see if there is any difference between them and the ones my Doc gives me... "Cure" catheter, hydrophylic... straight tip, beveled eyelets... pretty comfortable... I couldn't really tell what teh diff was between all the Coloplast products... like what is "Plus" about it? Compact? Like for travel? Does that one fold out to full length? Guess it must... BTW: How much does it cost for a box of 30 caths, approx? I hope I don't have to pay... but in case...
Tucsonjj hank1953
Posted
Ah... yes, mine starts the flow just after resistance, when the cath is almost all the way in, 12" or so... that is why I think maybe a BIN would work... not much resistance elsewhere, but can feel some... at the prostate? Not a problem there...
Tucsonjj jimjames
Posted
TKM Tucsonjj
Posted
Tucson, I sampled a "Cure" catheter that had a stripe the full length of it. That made it easier to know the orientation of the coude tip. It also had a thin sleeve for handleing.
Thomas
Tucsonjj TKM
Posted
Mine don't have the stripe, as they have a straight tip... is the coude tip easier if I have resistance at the bladder neck?
I thought the thin sleeve was because they were being cheap! ;-) Works OK, sometimes the grip is a little "iffy"... did you find the "Cure" cath as comfortable as others?
hank1953 Tucsonjj
Posted
Tucsonjj hank1953
Posted
Thanks. The 14's work fine, with a little bending... the 16's are OK too (very slight width difference between them)... but sometimes had a little trouble getting the 16's past my bladder neck...
I find that since I started doing the CIC, I can hardly pee on my own at all... maybe that was coming anyway... have a new UroDoc week after next... hope he has some ideas...
TKM Tucsonjj
Posted
TJ, The coude tip is recommended for most people with enlarged prostate, should be easier at the bladder neck, provided it's positioned correctly. I find the coude tip red rubber catheters the most comfortable, and use them at home. The Bard Magic3 is relatively flexable, comfortable, and pre lubed. It has a good sleeve for advancing without touching, which is important in an unclean environment. I prefer the Magic3 for cathing away from home. The Cure catheter I tried was a little stiff, but I liked the lengthwise stripe on it. Sample different catheters and find out what works best for you.
Thomas
Tucsonjj TKM
Posted
Thanks! I will try to get a sample of the Bard Magic3... so far, the 14's and 16's of the straight tipped "Cure" caths are working and comfortable... I had ONE time where I couldn't get a 16 past my bladder neck, but had just tried to do a regular pee before cathing... so maybe the neck was tensing... I was a little uptight myself. Waited 5 and did a 14 no problem.
I still am bummed that I do a cath at night a hour and a half before bed, with only a few sips of water... yet wake up with a very full bladder... I am not drinking much anymore, but I guess the body sends fluids to the bladder as we sleep... lots of fluids! No biggie, but I really don't want to cath at 3am!
Appreciate your help!
hank1953 Tucsonjj
Posted
jimjames Tucsonjj
Posted
Tusc,
You may have nocturia polyuria, you can google it. The cause may be other than your prostate and many of us have it to one degree or another as we get older. Also, and I may be confusing you with someone else, but you don't need a sleeve protect the catheter from bacteria. I described a no-touch technique, sometimes called the "dive bomb" in one of the main CIC threads you can refer to.
Jim
Jim
rdemyan jimjames
Posted
I was planning on a post regarding nocturia polyuria. Can you let me know if there are already some good threads on this forum regarding nocturia polyuria. I seem to have a very difficult time searching for items in this form. Maybe you can help me with how best to phrase search criteria as well. Thanks.
Tucsonjj jimjames
Posted
I may well have that... but... although it is probably unusual, I do not have to get out of bed at night when I cath shortly before bedtime... used to be I would be up at least twice, sometimes more... perhaps this is why I have a large amount of urine stored in the morning now... I realize that I should consider cathing more than 2X/day...but since I am just a newbie to this... want to see if the bladder responds to not being over-filled all the time... I actually had a half-way decent "normal" pee this morning, probably because my bladder was very full... and shortly after, still had a large amount of urine come out during the morning cath... My thinking is that I store a lot of fluid in my tissues, even though I have reduced intake by a large mount... that leaches out into the bladder as I sleep...
Thanks for your help!
Tucsonjj hank1953
Posted
jimjames Tucsonjj
Posted
If you want to know if you have nocturia polyuria do a 24 hour void log. Simply write down the time and amount of each void. If your night time total is more than 20-30% of your total volume then you have it. As mentioned before, it's very common as you get older and a prostate reduction surgery can only help marginally.
Jim
TKM Tucsonjj
Posted
Tuc, A urologist told me we generate more urine at night because the body is laying flat which makes it easier for the kidneys to process the liquids versus the daytime when we are up on our feet and liquids are drawn to our lower extremities. Sometimes I have to get up twice during the night to cath. Definitely a bummer. The other thing is that cathing can be addictive because you start to like the feeling of being empty, so when you feel the slightest urge, you want to cath. It makes it easier to sleep and easier to concentrate on things. I started winning at poker when I cathed before playing. Also I usually want to cath before leaving the house even if it is a small amount so I don't have to do it while out.
I tried size 12 Bard Magic3 coude today, worked very well. I think I had a problem with size 12 red rubber caths leaking around the catheter and causing a burning senasation in the urethra. It was also difficult to pull it out, maybe because some of the water soluble lube was dissolved.
Good luck,
Thomas
jimjames TKM
Posted
-------------
Correct but generally seen only in the older population like many of us here. When things work the way they should, the kidneys will produce less urine at night in spite of the fact we are lying down.
As to the different catheters, in general you can go down a size when going from a red rubber to a stiffer vinyl or plastic. Personally, I like the Coloplast Speedicath Coude in FR12. I started with FR14 and worked down.
Jim
Tucsonjj jimjames
Posted
Makes sense... I am 62, but have had to get up often during the night for a LONG time... until I had to start cathing... My worst retention was at 27ish years old... long term problem, I shouldn't be surprised that it finally, recently pretty much stopped my ability to urinate on my own. :-(
I had a BNI and partial turp in my 30's... no problems at all, worked for a decade or so... then things started to gradually slow down again...
I am bummed that most all of the surgical procedures have so many bad stories here... I am hoping that a huge percentage work fine, with no "reviews" here, due to success... only failures inspire reviews, I figure...
Tucsonjj jimjames
Posted
I am getting used to the CIC... but still do not enjoy it, other than the sigh of relief when empty... seeing a new UroDoc week after next... hope to have some new ideas as to how to address this...
jimjames Tucsonjj
Posted
Twice a day is certainly better than before but ideally you want to keep total bladder volumes under 400ml. Have you done a 24 hour urine log? In general, if you void 2000ml in 24 hours, and have no, or very little natural voids, then you will need to cath 5-6 times a day. By keeping your bladder volumes under 400ml, the bladder will decompress and also keep your kidneys safe. It also might heal some, regain some elasticity, and if you're lucky, you may see some increase in your natural voiding function over time like I did. In fact after a couple of years of CIC I was able to get off the catheters completely for periods of time and currently I am able to go for days without CIC while in the beginning I required it 6x/day.
Have you had a bladder/kidney ultrasound study? This will tell you if your kidneys have been compromised. Significant retention can cause something called hydronephrosis (water in the kidney) which can be reversed by CIC but you really want to have it checked out if you haven't already.
How long have you been doing CIC? The beginning can be trying but overtime it can get very easy and routine. If you haven't been doing it for at least three months I'd give it more time before throwing in the towel.
Jim
Tucsonjj jimjames
Posted
Thanks, Jim for your help! Yes, 2X/day has really helped, I feel better and my abdominal distension is significantly improved... I started only around 2 weeks ago, max. I don't have a good ml graded container to void into, but will get one... my guess is now around 600ml +/- at night and maybe a little more in the AM. I might try a 3rd cath, around 2PM... see if I get decent volume and if improvement continues. I did have a ultrasound, and blood tests, showed kidney health and function fine... odd, but no bladder ultrasound was ordered... I am hoping to have a bladder MRI done, but insurance might not agree and I am a bit concerned about some people's bad reaction to MRI contrast materials... if needed.
Hey, that is GREAT you were able to see such improvements in your normal function via CIC! I am getting pretty darn comfortable with my cathing... enough to almost for sure cancel my Green Light procedure scheduled for 9/26... I see my 2nd opinion (and maybe new) UroDoc 9/18, guy named Wright in Tucson, he is one of the few that has a very good rep doing the HoLEP procedure, which is a little drastic for me at this point, but hopefully means he is very sharp, and can recommend a good way forward ,even if I stick with CIC for a few years... and that seems doable...
BTW: Does insurance cover your catheters? I have been getting a good amount from my current UroDoc's assistant...
TKM Tucsonjj
Posted
Get a prescription from your doc for catheters. My doc sent a prescription directly to the company they use for catheter supplies. Now the company calls me every month to ask what kind of catheters I want. They supply 180 per month, 6 caths per day for 30 days. The original prescription was for coude tip so they will only supply coude tip catheters although I have tried different types from different companies. They will also send a few samples if you request them.
Thomas
TKM
Posted
Thomas
jimjames Tucsonjj
Posted
You are doing great for two weeks! Much better than I was. In another month or two it will be as routine and easy as brushing your teeth. As to GL and HOLEP, both are viable long term solutions but you will probably give up your ejaculate in the process. This matters to some men and to some men it doesn't. If you haven't experienced a dry orgasm, ask your doctor for Flomax and try it for a few weeks and see if that is something you can live with. I have Medicare and it covers up to 200 catheters a month.
You can find inexpensive plastic/pyrex beakers at the supermarket. One side is usually ounces and the other side is millileters. Again, ideally you want to keep your bladder under 400ml of fluid.
Jim
Jim
Tucsonjj jimjames
Posted
Thanks, Jim! I think I will take some time, see how things go...
BTW: Ever hear of cannabis CBD oil for BPH? I also read that magnesium can help, but I tried 600-700mg/day for awhile, only made me lightheaded and not much difference peeing... maybe a little... I think one article said some old time Doc gave a patient that was totally blocked 2 grams (a BIG dose) of magnesium chloride orally and he peed like a racehorse... I have my doubts...
Tucsonjj TKM
Posted
Tucsonjj TKM
Posted
Thanks, I am working that now... we shall see... sounds good though... it is the Bard Company and their sister Company... though I might try a different company... my current "Cure" caths are working well... hydrophilic, which I like...
jimjames Tucsonjj
Posted
Jim
Tucsonjj jimjames
Posted
Thanks! can you give me a few names of online catheter distributors? How about recommending the most comfortable 14 or 16 caths? I like Hydrophylic... seems easier... but is gooping non-hydrophylic caths up with lube better?
I don't think I need a coude tip, though I always seem to have the most "resistance" at the bladder neck... I wonder if that would help?
norman85944 jimjames
Posted
Hi Jim, I have read many of your comments on this and other threads, and I respect your experience and knowledge. How did you rehab your bladder by doing CIC? A year ago I was having difficulty especially at night with a strong urinary urgency continuing after a small natural void. The only way I could get relief from that urge was to ejaculate. I came to a crisis just before Christmas when I could only dribble a few CCs with no relief. I went to the local ER and after several other issues finally got a good Foley catheter put in for almost a week. I was taking both terazosin 10 mg and tamsulosin 0.4 mg. After getting the Foley out, I had good flow and little retention for about 4 months, but then started to slow down again. My uro gave me a sample of different 14 Fr straight catheters, which I finally had to start using when the urgency didn't diminish right away. Usually I got around 500 ml with a bit of blood each time I tried with the straight catheters. I had a cystoscopy on May 25 which revealed a couple false passages and a tribeculated bladder. My uro prescribed Coude tip catheters and I have been using Coloplast SpeedyCath 14 Fr coude with no real problems since. When I was trying other straight-tip catheters I found the SpeedyCath easy to use compared to even the other hydrophylic types, as they were already wet, where the others that had a tube of water that had to by burst before opening always seemed to not lubricate well. My uro did not explain how to schedule the use of the catheters, so I have just been using them as needed when the urgency does not diminish. That usually happens in the middle of the night. Cathing in the day usually yields only 150 - 250 ml, which doesn't seem worthwhile. So would you suggest a schedule of 2 or 3 times a day? And what times would be best?
Thanks in advance for any insight you can provide.
Norm
jimjames norman85944
Posted
Hi Norman,
I also started with Speedicath 14F Coude and found it worked very well. Coude tips are designed to go around obstructive prostates as well as false passages. Later, I dropped down to size FR12 which is a little more flexible but not too flexible to work.
As to frequency, for starters I would keep a 24 hour void log writing down the time and amount of each natural void and each catheterized void. The general principle is that your bladder should ideally be holding no more than 400ml at any one time.
So, if for example, you have a natural void of 200 ml followed right after by a catherized void of 500ml, that means your bladder was holding 700ml and that you should therefore increase your cath frequency. On the other hand if you find that your total bladder volumes are always well below 400ml, then you might decrease your cath frequency. The average person drinking their 8 glasses of water of day, who has very little if any natural voids, would have to cath around 6x/day but that is just a general starting point. The void log will be your bespoke guide. Also, if you are able, you want to at least try for a natural void before any catherized void.
I talk about bladder rehab more in a couple of CIC threads that I started a few years ago. Just keep in mind that it can be a long process and in my case I didn't get significant results for over a year and it took two years before I could put the catheters away for long periods of time. Others here have also reported improvement in their voiding function from CIC but not as dramatic as mine. Some have reported no progress. But even with no improvement in bladder performance, CIC still protects your bladder and kidneys as well as any surgery and therefore is a viable alternative to surgery either short term while trying to decide on a procedure or as a long term solution instead of a procedure or surgery.
Have you had a bladder/kidney ultrasound? This is an important test to have periodically to check not only your bladder but for any potential kidney damage. With CIC, your kidneys should be fully protected but not a bad idea to have one done periodically.
Jim
norman85944 jimjames
Posted
Hi Jim, Thanks for your informative reply. I am still fairly new to CIC, and I wish my uro was more proactive in suggesting CIC. I have been seeing him for 10 or 15 years for reduced flow and increased frequency. I at first thought it was related to an old injury, but found that I was also suffering from BPH. If I had learnedCIC two years ago I would likely have avoided current bladder issues.
I am down to only taking Terazosin for BPH, as the prescription for Tamsulosin expired and no refills are available. I am ok with that, as I don't like to take meds if not necessary.
I did have a bladder/kidney ultrasound performed 10 or 15 years ago, but I never heard, or forgot, the results of that scan. I need to contact the hospital where it was performed to see if they can share the results if they still have them. I have had two cystoscopies, the first showing the restriction that resulted from the old accident and the prostate restriction as well, The bladder looked pretty good then, but the second scan showed the bladder to be badly trabeculated. I'm sure that CIC could have prevented that. I have a 3T mp MRI scheduled for early next month. I have finally convinced my uro that MRI is the way to go, rather than the TRUS biopsy. It has taken some time. PSA and another test indicate that it is time to more closely monitor what is happening with the prostate.
Several times I have experienced leakage around the 14F catheter, so I got some 16F samples from my supplies. They were significantly harder to insert, with more discomfort, so I'm staying with the 14F SpeedyCath.
For info, I am a 67 year old male (of course, lol!) living in California and leaning toward FLA for BPH and any PCa that may show up. The other treatments I've researched don't seem to hold as good a promise with minimal side effects.
Regards,
Norm
TKM norman85944
Posted
Thomas
norman85944 TKM
Posted
Norm