A couple of weeks ago my urologist told me I didn’t need to wear the leg bag with my catheter anymore – if I didn’t want to. I wrote about this in my article – I Haven’t Really Need This Leg Bag! At first I felt a bit like “I wish I’d known this 3 months ago!” But as it turns out, I couldn’t have gone bag-less any earlier because I was being prepped for my antegrade-retrograde urethrogram (read about that here – Results Of My Combined Antegrade And Retrograde Urethrogram), during which time my bladder and urethra had to be resting for 3 months. This apparently makes for a much more accurate picture of the stricture length and location.
But now that they have done the urethrogram and pinpointed the details of the stricture (small, thanks goodness!), I can go bag-less every day. However, even after a couple of weeks I still have to go every hour.
So I’ve been wondering if I should be holding it for longer, trying to push through the discomfort of the urge to pee for longer and longer, in order to retrain my bladder to hold onto the pee for the normal 4 hours. My hunch appears to have been right, according to the below article. Basically, you have to inform your bladder that YOU are the boss, not IT. As it turns out, that’s not entirely true. I’m bending to my bladder’s will…eventually. But I was able to get up to 90 minutes a few times yesterday. So maybe it’s working.
Anyway, here is the article I refer to: https://www.bladderandbowelfoundation.org/bladder/bladder-treatments/conservative-treatments/bladder-diary/
thankyou for the link. I had an indwelling Foley’s catheter for approximately 4 months which is due to be removed by month end. dr had discussed regarding the probability of incontinence and need for bladder training after the removal. was searching for relevant information and found the link you posted.
Ken Theriot says
You’re welcome! I wish you good luck with this.
Richard Ledford says
The LINK in your post has broken
Ken Theriot says
Thanks Richard. They changed the article on their site. Here is a new link, which I’ve also updated on the article: https://www.bladderandbowelfoundation.org/bladder/bladder-treatments/conservative-treatments/bladder-diary/
Allen Alexander says
I wish my doctors had prepared me for this. I had my the tube and bag (or as I thought of it, my ball aad chain) for six months during my treatment for my Stage Four Prostate Cancer. I had numerous issues with sediments blocking my catheter. It would become blocked causing my bladder to back up in to my kidneys, causing an U.T.I. resulting in 3 or 4 days in the hospital. Call me a wimp, but the catheter would become incrusted in my bladder. The urologists only wanted to change it out every four weeks, but I showed them I couldn’t last but three weeks.
One time on the change out, I had four people in the tiny treatment room pulling on my tube, I was screaming it hurt so bad. I tried to communicate to the nurse who was scheduled to change it out my problems, she brushed my concerns aside saying she did this a dozen times a day. It took the nurse, a PA and two doctors to remove it. All the while I was having visions of being cut open. Maybe that is why they didn’t prepare me better when I asked about getting rid of the catheter?
Ken Theriot says
That sounds horrible, Allen (sorry for the late reply!). Did you have your surgery?
I was wondering how long it took you to get back to normal. I only had a catheter in for 33 days but after 2 weeks of having it out I still find myself getting up to go 2 or 3 times a night.
Ken Theriot says
Jeff. This is something that depends on the individual. I know this because my mom went through a couple of surgeries right before I did, neither of which lasted more than a few hours. And just from THAT, she reported having to take months before she could sleep through the night without having to get up 2 or 3 times to pee! And I had “practiced” retraining my bladder with the valve in my catheter (which as it turned out was something my surgeon didn’t WANT me doing. Other docs in the same clinic are the ones who let me do it – did it FOR me! My surgeon mainly works at the university and only comes in a couple times a month. Oh well. It all turned out OK). ANYWAY – by the time my post surgery transurethral catheter came out, I was able to pretty much immediately sleep through the night. But like I said, this is a very individual thing.
It should get back to normal. It just might take awhile.
Sorry I couldn’t be of more help. Good luck!
Thanks for the reply. I guess I will just keep practicing the bladder retraining and everything should improve with time.
My wife has had a catheter in for about 3years is it possible to remove the catheter and retrain the bladder? The nurse said it would be impossible as the bladder would have shrunk to a very small size and would not be able to go back to its original size therefore my wife would have it in the rest of her life. Is this correct?
Ken Theriot says
Hi Adrian – I don’t believe that is true. I had one for 6 months and went immediately back to normal function once removed. Clearly 6 months is not 3 years. But still, I find it hard to believe bladder atrophy would occur to such an extent that it can never regain function after only 3 years. Remember, I am not a doctor, etc. So I’m only going by my gut here. I’ll try to do some research on it and get back with you. Also, I recommend asking a doctor. I hope that helps.
I’ve had an Indwelling catherer for a year now. A nurse told me it was impossible to retrain the bladder muscles after that length of time.
Someone please tell me this isn’t true. 🙁
I’ve had all bladder surgeries possible and even botoxed the bladder as a day surgery.
Ken Theriot says
Hi Rita. Let me preface this with the disclaimer that I am not a medical professional. I can’t imagine what that nurse was referring to. I had my indwelling catheter for 6 months. The day I went catheter-free, I was back to normal as far as the bladder control is concerned. that was my experience, so not “data” in the true sense. But is that nurse suggesting that you’ll never be able to “hold it” ever again? That would imply that you’ll need a catheter the rest of your life simply because your bladder “forgot” how to do its job.
All I can recommend is to seek a 2nd opinion from an actual urologist as soon as possible. It seems highly unlikely to me. But I would be interested in hearing what you find out from that 2nd opinion. Also, if there is anyone else here with knowledge or experience on this (maybe you’ve worn a catheter for a year or more), I’d love to hear from you.
I hope this helps!
Richard Ledford says
I am approaching my 3rd year with a urethral catheter, from my BPH reaching the level of acute urinary retention. I am planning to undergo PAE treatment this spring, and will be facing the “retraining the bladder” challenge.
I quickly became a self-cath patient and I advise all mid to long term indwelling catheter patients take charge of their own catheter management needs. I learned that many typical standard urological practice treatment decisions were NOT the best for me., primarily because I am an avid roller skater who typically does 15-20 mile training sessions.
1) Doctor wanted me to use size 14 FR but I determined that active urethral catheter users should opt for the thinnest and most flexible style that can handle their needs without plugging too easily or quickly, or being too infection promoting. For me a lubricated coated, FR12 size latex rubber catheter works best.
I typically go 2,5 to 3.5 months between catheter changes and have not had any infection issues for the entire 3 years.
2) I use a 1 liter leg bag that is specially supported as high up near my pelvis as I can keep it.
I use ti 24/7, and have no issues with it at night, other than getting up once or more. I have no concerns about evening consumption of fluids at all. The larger bag allows urine to accumulate without bulging out as much.
3) Before I drain it I try to have my bag fill to the point where my bladder back fills and gets stretched some. To confirm this,I make sure bag initially empties and then more urine keeps flowing into it for a while from what had still remained in the bladder.
4) I use custom made extension tubes (made from 10 FR size single-use disposable catheters) to lengthen my catheters in order to reach from the tip of penis to the much higher location of the bag’s entry point up in front of my lower pelvis.
5) I keep my bag positioned to the front, so it locates over the bulge of my left quad, and appears to be the muscle, not a urine bag
6) To handle the roller skating, I have multiple supports for the bag → a pair of bag elastic straps combined at the top; a 2″ wide velcro elastic strap below them for more support; a long elastic mesh tube support that folds up from knee to give one layer below the bag and one layer over the bag. All of these together keep the bag very well stabilized against the thigh and not able to shift with the high frequency of fast leg motions that skating demands.
7) I routinely get no significant urethral trauma after 20 mile skating sessions with this setup – not a small accomplishment.
8) I change my clear catheter extension tubes every 4-6 weeks as I observe them getting coated inside with microbial growth.
9) The large bag fills with more widening and less bulging under clothing, which is great, and the elastic mesh tube capturing it, further enhances this “spreading the liquid” across the thigh effect, so that there is less bulging below the clothes.
Ken Theriot says
Richard – Thanks so much for all those tips! It’s great to hear fhow active someone can still be with an indwelling catheter.
Good luck with your procedure.
I’ve just found this historic topic, googling desperately for help. I’m female, past my first youth and my problem is retention, not frequency. However here goes.
I had an op. for colon cancer in July. I had the routine catheter for such ops inserted and had a TWOC test a few days later in hospital but couldn’t do more than a dribble. I am inhibited about toilets, and can only go at home, or where I won’t be disturbed, so I wasn’t bothered, refused a second TWOC test in hospital and said I’d do it with the community continence nurse when I got home.
A bit of background. I had been incontinent the other way since I had a hysterectomy years ago, but managed perfectly well with pads. The only problem was UTIs one after another, but again I managed until I had a really bad one a couple of years ago. The urethra was so inflamed that I couldn’t urinate at all. I was admitted to hospital for emergency catheterisation, and learned that even very experienced staff had great difficulty getting the catheter in and I found it excruciating. I was then sent home. 10 days later I had a cystoscopy under GA and came to with a massive pain in my belly. After about half an hour of yelling I blissfully burst and soaked the bed. The results of the cystoscopy were clear and there were no strictures. The diagnosis – a big floppy bladder and retention of urine causing frequent UTIs. I was told I’d have to self-catheterise with the help of the community continence service. When I eventually managed to find the urethral opening(weeks!!) the pain as I pushed through the resistance at the sphincter was indescribable, and I could only bear to do it once a day. However, there was not a lot of urine coming out – as little as 50ml, so I was signed off as not in retention and thought that I’d been right and the UTIs were caused by self E-coli infection via soiled pads, and not retention.
I had the home TWOC on 11th August but by the late evening I had not passed enough urine and so phoned for the night district nurse to come to me at home to measure what was left in the bladder and recatheterise if necessary.
Fatally, trying to be helpful, I told the idiot on the night line that I had tried to self catheterise without success. This apparently set off alarm bells, and, against my desperate attempts to explain that I wasn’nt a urological emergency, he sent an ambulance to take me to the local hospital A&E . There I explained the simple problem to a doctor, but after the catheter had been replaced at my request and I asked to be taken home, he astonishingly said that he was sending me on to a bigger hospital with a bigger and better urology department!! I gave up.
In A&E there I at last met a doctor who understood. I gave him the full tale and he carried on for a bit about stupidity and waste of NHS resources before saying he was going to ring for an ambulance to take me home, as I should never have been sent to a hospital. I was left in A&E to wait, feeling stressed and exhausted, got up off the bed to wash my hands, had a sudden dizzy spell, fell and broke my R femur, needing a hip replacement, and my R (dominant) wrist.
Now, getting on for 4 months since insertion, I still have the catheter in. It causes constant discomfort and pain – sometimes unbearable, and I just cry. I’ve had a UTI for two months. Managing the catheter is difficult, as my R hand is useless and there is probably nerve damage, so I would’nt be able to self-catheterise. Although I am pretty helpless altogether, the presence of the catheter is the one thing that makes me feel like giving up on life. As I am so difficult to catheterise I can’t face the thought of being put through hell very 12 weeks while an experienced nurse rubs me raw and unable to walk for days with her in/out struggles.
So does anyone out there know if there is any hope for me? Is it worth seeing a urologist instead of the continence nurse – could one possibly help? PLEASE help me if you have any ideas!
Ken Theriot says
That sounds awful. I’m so sorry for all the pain and frustration you are going through.
Not having any experience with the specific issues you’re dealing with, I nevertheless kept coming back to one possible solution – at least one that might help get you through several weeks in a row in a somewhat better condition than you describe. And that’s a suprapubic catheter (SPC). I had one for 6 months prior to my urethroplasty. They put it in there because the stricture wouldn’t allow the passage of the tube through the urethra.
Well it might seem like having a more invasive catheter would cause MORE problems. But comparing the 10 days AFTER my surgery, when I had the standard urethral cath, to the 6 months before my surgery when I had the SPC, I have been VERY thankful that I had the SPC for 6 months rather than the standard kind. Perhaps you can ask a doctor to insert an SPC for a certain period of time to allow your urethra time to “rest?”
I obviously can’t know all the issues you are dealing with. And not being a doctor or nurse, I wouldn’t be able to give real medical diagnoses even if I did know. But just going from my own experience, it seems like it would be at least worth trying.
I hope that helps at least some. I sincerely hope you can get some answers and some relief!
i had my cartherter for 18months due to spine operation ,i just removed it recently i cant control my urine, can my bladder go back to normal ?
Ken Theriot says
Hi Maggie. Not being a doctor or nurse, I can’t tell you if your own bladder will go back to normal. I do know that my own bladder DID go back to normal. My mom also had bladder problems after a surgery and it took months for here to go back to normal. But it finally did. She was 75 at the time. So yes, the bladder CAN go back to normal. I hope that helps.
I had an umbilical hernia repair in mid March of 2019 and was under anesthesia close to four hours. Afterwards I received much pain and nausea meds. A foley catheter was placed during surgery, however a couple of days later it was removed but I had very little urination so a cath was put back in. I was in the hospital eleven days and about every couple of days the cath was removed but no urination so new cath. Upon discharge I was sent home with the cath in.
My nurse and I have been clamping the cath to try and retrain my bladder. So after three weeks of being home I got a doctor to authorize removal of the cath, but after seven hours still no urination, so new cath placed. I was urinating fine before this surgery. I’m to see a urologist at the end of April and hope to get this resolved.
When the cath was removed at home I could feel urine come into my urethra, it just never would come out. Even though I’m glad to be rid of the bulge from the hernia, I’m starting to wonder if this surgery was worth it.
Ken Theriot says
Wow Debbie. I’m sorry to hear that! I hope your appt with the urologist can yield some answers for you. Maybe you developed a stricture during your surgery? Either way, best of luck!
I was finally able to see the urologist on April 30th who put me on a medication called Bethanechol three times a day, but left the catheter in place for another week. After a week the catheter was removed and a small amount of liquid placed in my urethra to see if I could expel it as if going to the bathroom. I did expel it so the catheter was left out.
I’m still on the medicine which encourages my bladder to fill and contract. Sometimes I have to “push” some to get the urine to come out, but at least I’m free of the catheter and able to urinate, and do feel like I’m able to empty my bladder completely.
Ken Theriot says
Sounds terrific, Debbie. Hope that keeps up!
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Thank you for sharing your story. I really struggled to find info to help me with weaning off long term catheter. Here goes my story (I’ll try to keep it catheter focused)
I got really sick 9months ago with a headache. I was quickly transferred to icu where I was diagnosed with a rare form of autoimmune encephalitis. That’s when my catheter was first put in. My first trial of void happened in icu when I was conscious and was a complete disaster. I’ll spend 2months in icu, and then 6 months in rehab hospital learning to walk again.
I had trial of voids at each cath change, every 4 weeks or so. Unsuccessful and very challenging mentally. I could feel I need to go but couldn’t.
I had a flip Flo (tap) fir a few weeks, trying to teach my bladder to fill and void. Closer to my discharge date, I really didn’t want to go home with a urine bag and a straw in my pee hole so I learned to self catherise. I did it for a few weeks until I felt like my bladder was slowly reconditioning and decide to stop.
I’ve been home for 2 months, my continence 9months later is still a massive challenge, but it’s better. I woke only once last night! It’s usually 4-6 times.
Through it all, I didn’t get much help except ‘it will be fine’. I needed more. I did see a continence nurse, but mostly it’s been me and my motivation to pee again like I used to. The body is amazing and I hope it will bounce back. My period stop in December and 9months later it just came back. That gives me hope.
I wish I had someone in the sameish situation to help me. Today maybe I can be that for someone. If you have any questions I’d be happy to answer. I now (funny saying that at 36!) have lots of experience with catheters, self catheterisation, continence and rehab (pelvic floor physio and biofeedback devices).
Don’t give up. It’s a long road and continence has hurt me emotionally so much, but I’m getting better. Still a long road ahead.
Ken Theriot says
Thanks for your story, Sasha! I hope things get even better for you!