I know the thought of exercising with a catheter is a pretty weird, unappealing and obscure topic but definitely worth mentioning at this stage. Sorry if you’re one of my friends catching up with me! Sure this is just a temporary issue for me but it might be useful for others. Besides, in the spirit of blogging being a web-log, like an on-line journal, I think it’s worth a mention as there isn’t much on the web about this.
So here goes. I’ve had this indwelling catheter stuck inside me for over two months. This is much longer than originally anticipated and, to be honest, I’m a little disappointed I still have it. You can clock the reason here. I think I might be free of it in August, once I’ve had my Holep prostate operation.
Running with a catheter
Running with a catheter isn’t an easy thing to do, at best it is a tad uncomfortable and involves faffing round a bit. The issue is I’m feeling sore through the tube jostling about as it comes out of my urethra, plus what you do about the leg bag. Here are some pointers for anyone who has found this post through Googling their way here.
- I have tried a little KY jelly to lubricate the tube just inside me with limited effect. It is worth a try and I doubt if it would do any harm, could probably only help improve things but only marginally.
- I run for only about 30 minutes at a time. That’s quite enough time and the inevitable chaffing that goes on.
- Disconnecting the leg bag and replacing it with a tap (photo above) does seem to work. I wear proper running shorts (such as Ron Hill or Salomon brands) and this works fairly well. My consultant thought that was a good thing to do and he advised the 30 minute maximum time
- It is worth persevering with. I think I’ll cause more harm by not running at all.
Cycling with a catheter
I have recently tried this once after convincing myself it might work and it is worth a go. It wasn’t, in fact it was AGONY!!!!
I made sure tube and bag were correctly positioned so that would be comfortable, not pulling or causing any other problems. This was fine in itself.
The huge problem was the way I could feel it inside me i.e. how I was almost sitting on the tube inside me. Even though the tube itself is quite soft, I could still feel it and as mentioned it was agony. I only cycled for a few minutes and then I walked home. Not good.
Wrapping up
There’s not much on the web about this. Perhaps it is obscure? Perhaps it is because the men or women who need a catheter aren’t sporty anyway? If they do have one, the last thing they want is to go running, cycling or doing any exercise – is this true?
When I spoke to my consultant at the hospital about this, he was pleased I was wanting to stay active and encouraged me to do so, saying he wished more of his patients were more active. In fact he went on to say most of his patients were in the system because of their inactivity. It is therefore a little frustrating when you find that there are virtually no catheter related products or advice to make life easier for those who have a catheter fitted and want to be active and sporty.
Later – April 2019. I no longer have a foley type catheter, I eventually had it taken out for good in November 2018 after I had my HoLEP operation. Nowadays I have to use intermittent catheters and will need to for the rest of my life. It does make life easier for being active but there are always pros and cons with all methods.
Comments are welcome below….
Hi Doug,
I am a 57 year old normally very active fit male and recently had an emergency foley catheter inserted due to prostate urinary retention. At this point I cannot self catheterize due to the resistance from my prostate. I have surgery scheduled (TURP) in approximately 4 weeks.
My wife had arranged a hiking vacation prior to me having the foley, not knowing there would be any problems she did not purchase travel insurance. We are going on the vacation but as it stands I may be staying at the hotel while she hikes. The vacation will be 1 week long each day consisting of variable length hikes 1 day 8 hours other days 4-5 hours with hilly/mountainous trails. The group is an older crowd 50 years and up. At the end of each hike we likely return to the hotel.
Do you have any experience hiking with a catheter? The catheter tap looks like a good idea but I wonder if it is a good idea to participate in some of the hikes.
Your feedback would be appreciated.
Thanks
Ed Rokis
Toronto Canada
Hi Ed
Many thanks for your comment.
It sounds as if you and I have a lot in common. We are almost the same age, active and have [had] prostate issues. I had urinary retention and needed the same kind of catheter while I waited for surgery. By the way I had the HoLEP procedure under general anaesthetic, I had to wait until November 2018 (see more recent blog posts).
My hospital consultant said it was important to have the catheter for quite a while in order to allow the bladder to “recover”. I could only use the tap for short periods (30 mins) to prevent the bladder having too much urine in at any point.
In addition to my efforts to stay active which I have outlined in the above post, in late July I did go hiking with my younger daughter who works in North Wales, UK. We went up Mt Snowdon and this took us 5 hours, including our descent. The terrain in parts was pretty rough with a little bit of scrambling up a steep rocky path. If I took large steps (either going up or down) I could feel the catheter pulling a little. On it’s own that doesn’t matter but after a few hours of the same thing you would start to feel very uncomfortable and sore, to say the least. So the answer was simply to take smaller steps and make sure your clothing works as I guess we tend to use more ‘outdoorsy’ clothing for hikes and we wouldn’t wear it in normal use, perhaps.
As far as drainage is concerned, I used a leg bag with a longer connecting tube – I simply asked my Doctor to prescribe this for me having received a free sample from the suppliers. This meant the leg bag was strapped to the lower part of my leg with the elasticated straps going above and below my knee, this was comfortable and very secure. The tap was by my ankle and therefore the tap could be discreetly opened whenever necessary.
Hope this helps and also I hope your vacation (or holiday as we say in England!) goes well for you. If you get the chance, please let me know how it goes for you.
Hi Doug
Thanks for your response.
I will obtain a leg bag with an extension and see how that works before going on the trip.
By the time we depart on our trip I will have been on the foley catheter for approx 6 weeks. I will ask my urologist if a catheter tap with frequent bladder voiding is advisable considering the amount of time elapsed for bladder rest/recovery.
Either way I should not be confined to my hotel room. I will let you know how it works out.
Hi my name is Joe been active all my life I have a en larged prostrate l be had a catheter for 2 maths wanted to know if I can work out with weights. Going to have surgery soon. Thank you for any info. U can give!
Hi Joe
Many thanks for finding my blog and leaving your comment.
There’s a lot to be said for staying active and keeping fit. I remember when I had my pre-operation check, the hospital was pleased I was in good shape and fit.
I guess the main thing you have to avoid is any injury from the catheter tube pulling the wrong way. If you’re careful I would have thought you’d be okay with upper body exercises. Could be a good idea to discuss with your Doctor if you’re not sure?
Hope this helps Joe and I hope it goes well for you – let me know!
Doug.
Hi,
I am glad I found your posts above, I am very much in the same situation. I had been quite active up until I got retention and catheter fitted in Dec 18 (actually on my 53rd birthday) 6 weeks ago.
I mostly always use the Flip Flow Valve method, but have the bags if I need. My work is generally at a desk, but do a fair amount of driving (whilst pacing myself for loo breaks often).
The plan is to have Rezum to make a hole for weeing out, though that is only when a urine infection goes and my PSA comes down (hopefully).
I have a holiday pre-booked to go to USA with my son (20). We would normally be doing lots of long fairly energetic sightseeing walks/hikes. I find that if I can get the catheter held in place with tight underwear it reduces the in/out movement of the tube. I am also perhaps concerned that even a small movement of the catheter but over a long walk (say 3 to 4 hrs) may cause some internal irritation. I am planning to do some trial walks before going so I know how to manage it.
Happy to hear any further experiences and advice on this or treatment.
I admire your courage Doug for trying to cycle…sadly that puts all your weight down on the worst place even without a catheter!
Danny
Hi Danny
Many thanks for leaving your comment and I certainly wish you well. I hadn’t heard of the Rezum treatment before but having Googled it I now understand. Having a urinary infection isn’t very nice so I hope this clears up for you.
Good luck with the treatment, your holiday and staying active.
If you get the opportunity, maybe you could leave another comment to say how the treatment goes and what the outlook is in the longer term – does the treatment need repeating or is it a one-off? I say that as this post seems to generate a lot of traffic, so anything you say here might be helpful for others.
Hi. Interesting to find your post.
I’m 61 and just had the Rezum treatment. I have a catheter for a week with bag which will switch to a tap after 2 days. I’m feeling ok so thought I would see if I could run with it. I normally do 3 days a week so will miss it. You are right, not much info is there. I’m not sure I will be able to, it just feels too tender at the tip.
Hope you are ok. Cheers, Tim
Hi Tim
Thanks for your comment and for getting in touch. Hopefully things are going okay for you in these early days and the treatment will prove successful for you.
You didn’t say how long you are likely to need a catheter for, hopefully not too long. I had found a little KY jelly may have helped avoid some chaffing but otherwise it might be a case of being patient for the time being, however I do share your frustration.
As for me and running, my mileage is increasing along with my general fitness, so that’s good. I have had a few runs of about 60 minutes nonstop. That’s little compared to what I used to do and so I am hopeful in getting back to where I was.
Hope this helps.
Tim
Hi
If you dont mind could I please get an update on your progress ?
I am a few weeks behind you in the Rezum procedure
Regards and thanks
Kevin
Hi Kevin,
Sorry to read your story below. One of the reasons I opted for Rezum was the lack of side effects. I have not read of your situation as an outcome, I hope you are ok when they take the catheter out next time.
I could go straight away after removal but took a couple of goes to void enough for them not to put it back. Post op swelling is the issue, hopefully that is what is holding you up.
For a week progress was great, passing greater volume and running again up to 8 miles. However I am now awaiting results of a urine test. It looks like I have a UTI, back to urgent and frequent passing and blood back.
Hopefully only a minor setback for me. Hope your issue gets resolved, keep us posted.
I’m glad I found this, I have had a catheter in for 6 weeks now, surgery didn’t go to plan and well here I am. I am a very active person and it’s a struggle to not do what I enjoy, anyway I’ve started walking, srmi fast paced, but say every second to third day I get blood in my urine, I want to start running again but wasn’t sure if I could without the pain. I’m happy (but also not) to see you had those same pains I am having. It’s so frustrating to not be able to do what you are used to.
Hi Leanne
Thanks for getting in touch! Sorry to hear you’re having problems and naturally I can really empathise with you.
From what you have said, I wonder if the tip of the catheter is rubbing against the wall of your bladder and this is causing the bleeding. Either way blood in urine is something your Doctor or nurse needs to know about.
You didn’t say in your comment whether your catheter is temporary or not. I wonder if it is possible to make use of an intermittent catheter? This might solve the problem, I certainly hope your Doctor or nurse can help you.
Hi all
I am a 60 year old and very active male; go to gym 5 times a week
Just had the Rezum procedure done for BPH and they took the catheter out and I could not urinate at all
They put it back for a few more days now and then if that does not work I have to self catheterise for the rest of my life, they were not very positive about other options or me urinating by myself either
Don’t know how my bladder lost function of all sudden
I thought maybe swelling of the prostate from rezum but they are not having that
This should not have happened with operation on prostate ?
I am struggling with this realisation that I may not get bladder function back
ever again
I work full time and are married with two kids
Any thoughts much appreciated; especially around exercise and self catheter or travel
Cheers Kevin
Hi Kevin
Thanks for your comment, I’m sorry to hear of your issues.
It is hard to know what to say, especially as I’m not a Doctor. However…. Did you have some urine retention? If so perhaps you were only pee-ing just to relieve some of the pressure that was building up in your bladder and you were not emptying yourself. If that is the case, is it possible your bladder became stretched over time and you have lost some muscle tone?
Maybe another TWOC will work for you. I was seriously disappointed when I failed my first attempt https://maturingwell.co.uk/index.php/2018/11/08/my-trial-without-catheter/
and then only partial success afterwards. I’ll email you but in the meantime having to self catheterise is no big deal and not always as life-changing as you might be thinking.
Thank you very much Doug !!!
Really appreciate your candour, advice and support
My urologist is VERY CLINICAL and matter of fact which is needed for the surgery; but sometimes you feel like there is an emotional component when bad news is delivered here that needs addressing by the professional but it’s not being canvassed;
The voice of experience from another man on this topic makes a big difference
This is prob the only time I have ever reached out for such help in my life
so it’s hard to accept the thought of self Cath for the rest of my life at the moment and or my wife
If you don’t mind I will keep you updated or ask more advice
I have being on the net searching for advice but your page stood out to me
Again thanks for setting up the forum Doug and sharing your experience and being so positive
Warm regards
Kevin
Hi Kevin
I remember when I first had an indwelling catheter fitted in the hospital (April 2018) and was told it was for a few weeks and until my HoLEP operation. In the end I had it until November 2018, 7 months.
There was certainly an emotional side to this, it was not discussed with me at all. Having this tube coming out of your penis is weird and of course for anyone who is sexually active it inevitably has an impact. I knew it affected my wife too.
When I was told about needing to self catheterise, there was a bit more empathy but it depends very much on the individual member of staff (in this case it was a specialist nurse in the urology department and was more understanding).
Now as have been using self catheters for over a year, it is no problem and part of my life now. I only need to use one 2 or 3 times in a 24 hour period, so that’s easy for me.
I will reply to your email, via email.
Doug.
Hi Doug,
I haven’t been in touch for a while as still watching and waiting to see Consultant now in October. However I now have another UTI and on antibiotics hoping to self pee again soon !
Using the intermittent catheter and surprised to hear you only need to use it 2/3 times in 24 hours. Did this gradually reduce ? Thinking I may need further treatment if this doesn’t clear soon
Still enjoying your blog
Hi,
Firstly thank you for writing your blog, there’s real lack of information for active male catheter users.
I personally had one fitted after acute retention and subsequently discovering an enlarged prostrate, l am 50 and was active hill walking and cycling. Having read your blog I have requested a flip flow valve to try and l am hoping that helps, l’m really struggling to exercise due to chaffing and cramps and tbh l can feel my moods slipping daily. Hopefully thanks to your blog l can turn that around.
Thanks again
Richard
Hi Richard
Thank you for visiting my blog and for leaving your comment. It goes without saying I’m sorry to hear of your woes, especially as you’re young to have those issues but hope things improve for you.
I will email you separately, in case that is of any help to you.
All for now
Doug
Hi all,
I am a Personal Trainer and a long standing client (who has heart issues) has recently had a catheter fitted due to benign urinary retention . His normal routine to maintain cardiac health included moderate squats, lunges, knee lifts, etc with light resistance. I need to modify his programme in the changed circumstances . Any advice would be appreciated based on your experience. My initial thoughts are to restrict squats and lunges and move to a more upright programme incorporating resistance bands to utilise pulling/pushing/ twisting action of the upper body , dumbell curls/extensions and some rotation combined with light boxing combinations.
There is little point stopping exercise because of the catheter at the expense of heart health. Kind regards
Hi David
Many thanks for the interesting question!
Really good to know your client is looking to continue his fitness.
The main thing, based on my experience, is the difficulty in having a bag of urine strapped to your upper leg with anything up to 500mls of urine in it. Then there is the catheter tube from the collection bag which, as you know, runs up through the urethra and into the bladder where it is fixed in place. This causes all kinds of discomfort, chaffing and wriggling around in a very sensitive part!
So if your client’s Doctor or Nurse would agree to a flip-flow valve, that would help. It means he can temporarily do away with the bag while he exercises. Having said that, there might be a medical reason why he needs to keep his bladder completely empty, so important for him to take advice.
Possible suggestions:
1. walking up and down steps for cardio
2. strength exercises with lower leg (sitting down and raising legs by pulling against a weight or band
3. upper body strength work
4. some stretching, all over
5. NO lunges, with a urine collection bag
6. NO cycling, with a urine collection bag and this is potentially very painful in sitting on the tube inside his body
You are right about the importance of keeping fit in these circumstances. I was certainly encouraged to do so.
Hope all this helps. I’ll send you my email, just in case this helps.
Doug.
Thankyou Doug,
Your advice is invaluable in this context. I shall indeed ask the client to raise the question of a flip-flow valve with his doctor, which will help enormously.
My initial thoughts on exercise prescription was to concentrate on upper body muscular endurance ( thereby achieving the desired controlled increase in heart rate) and since the lower body will be fixed in position, will also reduce discomfort. Hence the use of resistance bands which can be anchored so the client can use alternate pull and push combinations. Dumbell routines can be similarly adapted. My point about shadow boxing follows the same theme with the legs stationery but allowing some rotation you could do light controlled upper cut punches to raise the heart rate. All of these exercises will inevitably incorporate some waist rotation which brings me to another question. Most exercises require co-contraction of the core muscles to stabilise. In simple terms this could mean drawing the abdomen in as we exhale and perform the movement. Do you feel this would cause any problem ?
Hi David
I don’t think there’s a problem with core muscles being used, twisting, rotational sit-ups etc. I’m sure if your client feels any discomfort, he’ll say straight away.
It sounds as if you are being very thoughtful with your client in mind, with researching the issue and exploring options. Good work.
Feel free to ask any further questions, it might benefit others as everyday this post gets loads of views.
If you get the opportunity, I would be keen to know how things go.
Hi Doug,
I am reassured by your answer and now feel confident to proceed. I will indeed give some further feedback as time goes on and would be pleased to post a short video of the final programme as it evolves.
I have coached this client through rehabilitation after heart surgery and do not intend to stop now. Many thanks .
David
Hey Doug
I’m new to this too. Just had a permanent catheter removed after 6 weeks and unfortunately couldn’t urinate at all . So now I’ve started with the intermittent catheter and it went fine for the first three days . 14 times with no problems . Then today I tried 3 times and couldn’t get it in . Had to go back to the urologist nurse so I could empty my bladder . Just curious if you guys have any tips ? With the permanent catheter I had been running 10 k every other day without much problem. Now I missed a few days of running before today and was wondering if that had anything to do not getting the catheter in ( muscles to stiff ? ) any ideas ?
Thanks
Wayne
Hi Wayne
Thanks for finding my blog and also for your comment.
As you know, I’m not a Doctor or any healthcare professional, so be cautious about my answer!
Having problem in getting an intermittent catheter inserted may depend on the original problem you had. You did the right thing by accessing proper assistance.
However, sometimes inserting a catheter might generally be difficult for the following reasons:
1. You are tense and your muscles in that area are clamping up, if so, it’s important to simply relax although sometimes that’s easier said than done
2. Is the catheter lubricated?
3. If you get as far as the ‘valve’ by the bladder, try coughing as you gently ease the catheter in
You’ve done well in managing to run 10k with a catheter. I think the most I ever managed was 30-40 minutes before it became too sore and uncomfortable and my 10k time was about 50 minutes. Maybe you’re faster than me!
Hey Doug
Thanks for your reply.
Thanks for the tips , unfortunately I tried all of that , the relaxing, the coughing, and yes it’s lubricated . I just thought it was strange that I had no problems for 4 days ( using it 4 or 5 times a day ) and then suddenly today using the same techniques it won’t go all the way in . I’ll keep trying, but I may have to go back to the hospital tomorrow if I can’t empty my bladder by then . Got in a 10 k today but that doesn’t seemed to have helped the situation. Thanks for your help .
All the best to you
Wayne
BTW, I posted a comment and received an email asking me to click on “Confirm Follow”. I’ve clicked on the link several times and nothing happens. Thanks.
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Hi Doug,
Let me first say thank you for this blog and the information you are providing. I’m 67 and had just completed a 45 day streak on my Peleton. I usually ride 45-60 min, and often get a 4 mile walk in with my wife and 11 year old daughter several other days a week. So, I’m active, and have been all my life, like many of your readers. I had an episode of urinary retention, went to the emergency room, and was very, very concerned. I thought this was a big deal. To make a long story short, I am catherterized for the next week while I wait to see a urologist for the first time.
I feel like I have just entered a parallel universe that I didn’t know existed. The medical establishment seems to be in the 1950’s — “oh this is routine, its no big deal, and this is the way it is”, but underlying the assumption is all activity stops and your world revolves around the medical establishment– that we are all supposed to be doddering old guys shuffling back and forth to the doctors office with nothing else to do. Net, net– I think there is a huge disconnect between people (I won’t call the “patients” as that is part of the problem.) who have been active and how we currently treat many medical problems. Maybe I’m getting ahead of myself, and all this will resolve simply. My point — I think you are addressing a huge gap between active, fit adults — and a medical establishment that needs to speak slowly and loudly at you because they naturally assume we are all doddering 90 yr olds that have nothing else to do but sit at home at wait for next Wednesday’s appointment. Keep up the good work and I’d like to communicate by email. I think there is a lot more here.
I started the same process in December last year and since have had MRI and radioactive bone scans ,
high PSA after a UTI and biopsy. Waiting for another PSA IN October.
Interesting to hear how you get on !
Hear, hear, Greg! I’m 60, in the U.S., and in precisely the same situation. Awaiting first urologist appointment to see where we go from here. Just want to say thanks for this blog, Doug, and thanks to all the folks who’ve contributed to it.
For now, I’ll just lurk and learn, as I don’t have enough experience yet to add anything of use. If that changes, I’ll share with the group. Thanks to all, and best wishes.
Hi Jerry
Many thanks for finding my blog and adding to the comments on this post. Greg was spot-on with his observation and it applies, to some extent, here in the UK. It is definitely a mindset thing – whether we all just sit back, do nothing and expect Doctors to fix us, or we keep active and stay healthy. The other dimension to Greg’s point is the perception of patients – we are people.
In my weekly update, which I’ll post over the next couple of days, I’m going to talk about ‘social prescribing’ which is a new concept to me. This is starting to grow here in the UK and I think the basic principle is that people going to a Doctor with problems, don’t always need a pack of tablets to improve the situation – other things / activities can help just as well.
Thanks again Jerry and hope all goes well for you – please update further when you can!
Doug.
Thanks for this blog and thread of comments. Following a bladder infection that landed my 89 year old father-in-law in hospital – long story short is he now has a lifelong catheter. Up to last week he rode his bike daily for 30 – 60min to various local coffee stops summer and winter. I believe this is a significant part of his mental and physical wellbeing for his age. I was astonished to hear yesterday that he won’t be able to cycle anymore and grateful for the perspectives which provided better understanding here. It’s more complicated than I realised and I’m dismayed that it’s so challenging to cycle without pain / extreme discomfort.
Has anyone found a way that makes cycling manageable, or do we just need to encourage him in getting comfortable with walking more as a replacement for his daily ride.
Hi Janice
Really sorry to hear about your father-in-law’s situation but nevertheless thank you for raising the issue.
First of all, I am seriously impressed with him cycling every day at that age and you’re probably right in thinking it has helped keep him in good shape over the years.
To answer your question, I can only speak from my own experience when I had an indwelling catheter for several months. It really did impact my life and I hated not cycling and it was too painful when I tried it.
I did start to explore the idea of a recumbent bicycle which has a seat instead of a saddle:
https://en.wikipedia.org/wiki/Recumbent_bicycle
I didn’t follow that through as I had my operation and there was then no need but it could have worked. The issue with these is disability as they are quite low down. So the choice might depend on where he would cycle.
Another possibility – and one to talk to the Doctor about – is a supra public catheter. This is a tube which goes through the abdomen wall, straight into the bladder. It sounds a bit gruesome but it might be an option.
Once again, seriously impressed with your father-in-law; I hope I’m still cycling when I’m 89! Please pass on my best wishes, should you have the right opportunity.
Doug.
Thank you so much for replying – it is very much appreciated. Your blog, particularly on this issue, demystifies so much that is difficult to talk about or find information on. Glad to hear your operation resolved things and hope that you are enjoying time on your bike!
Thank you for this blog and all of the comments. My Dad, 83 this year, was diagnosed with prostate cancer last year which is terminal. Up until then he would easily cycle 40 miles twice a week but after having a catheter fitted about 9 months ago he found it too uncomfortable, he has had it removed this week but found getting up to go to the loo 12 times in the night a bit much, hence the catheter is back in. He is keen to get on his bike for as long as he can so I started to google bike seats this morning and came upon your blog. We will continue to try and look for a solution which must affect many, many men and it does seem a shame to give up something that keeps him physically and mentally fit.
Hi Lesley
Thank you for finding my blog and for your comment. First thoughts, it’s brilliant your Dad is wanting to cycle and enjoy the benefits as much as possible, given the circumstances.
As you will have read, I found cycling impossible with an indwelling catheter as it was too painful. Here’s a few options but please remember I’m not a Doctor or anything like that, just an ordinary bloke who once had a catheter inside him for several months. Hopefully his Doctor or Urologist can help find a solution.
1. Intermittent catheters. This are simple single-use catheters to drain the bladder and then it is discarded. Needs good hygiene, good eyesight and a careful hand.
2. Suprapubic catheters go straight from the abdomen directly into the bladder, so he would not be sitting on the tube. I would hate the idea of that but it might be an option.
3. An Elliptigo bicycle. It’s a bit like a cross trainer powered bicycle. A few years ago I tried one of these and liked it; not too difficult to adapt to it and I’m unsure how easy it would be for an elderly cyclist. At least you can remain standing and still cycle.
Here’s a link https://www.elliptigo.com
Hope this might help and with best wishes to you and your Dad.
Doug.
Hi. I’m 75 and had retention resulting in having an in dwelling catheter. At the moment I’ve stopped swimming as advised by the urgent care nurse and doctor (I’ll be bringing this up at the next appointment as i do not want to give up swimming). I use a recumbent exercise bike with a flat seat 20 mins in the morning and the same in the afternoon and it goes really well with no pain. When I next see the urinary nurse I will be taught how to self catherise. I’m also down for turp but as my bladder is stretched this might not be successful. I’m UK based
It’s great that you’re able to use a stationary bike with some comfort. I had similar retention issues which led to an in-dwelling catheter for a few months, and after unsuccessful bladder testing was not a turp candidate and was able to accept self-catheterizing after a period of some difficulty. Took a few months for my body to regain strength and endurance but everything is fine. Amazing how the body reacts to physical movement. I know that swimming with a leg bag and/or probably a flip-flow valve would be a bad idea with infection potential. But with self-catheters it’s business as usual. All the best.
I have an enlarged prostrate. Fortunately no cancer. I’m 78 years old and wasted the last year waiting for the op. No sign yet!!. Had quite a lot of problems with spasms, so it’s put me off exercising. However i am now considering taking up cycling in the company of an old friend. Trying in the garage on my bike on an exerciser first to accustom myself to the inevitable discomfort. Keeping fingers crossed re the pain and the hope of the op happening.
Hi John
Many thanks for leaving your comment. As you will have read, during 2018 I had an indwelling catheter while I waited for my HOLEP operation. I hated the catheter, although I understood it was a necessity in the short term.
I did try cycling and found it was agony, this was a huge disappointment but not entirely a surprise. I guess we are all made a little different from each other, so you might be okay but don’t do anything which could cause damage in that area!
Have you ever tried a cross trainer? Where you stand up and there is a kind of ski action. These are pretty good for all round exercise.
Let me know how you get on.
Hi, thanks for taking the trouble to produce this blog. It has already lead me in some very positive directions. One of these may lead me to intermittent catheters; how are you getting on with them?
Hi Gordon
Thank you for finding my blog and for your encouraging words.
Intermittent catheters are fine for me. The only real draw back is the inevitable infection which I seem to get a couple of times each year, each time involving antibiotics. I remember chatting with my Doctor who said anyone who uses intermittent catheters will get 2-3 infections a year, no matter how clean and careful they are.
Last year I wrote this blog post which might be helpful for you?
https://maturingwell.co.uk/index.php/2019/12/17/intermittent-self-catheters-patient-experience/
What a relief to find this blog! Writing on behalf of my otherwise extremely fit 93 yr old who is unlikely to be given the op. He wants to be able to stay active but can’t with the catheter he has fitted. Can you point me in the direction of some advancements perhaps in the US? We need to find another way. Many thanks.
Hi Sally
Thank you for your kind comment, I appreciate that.
It’s so hard to know what to say, especially as I’m not a Doctor or any kind of health professional. It is, however, really good for an elderly person to want to be active – I hope I’d be like that when I’m that age!
I’m afraid I don’t know about the US situation or what might be available. The only thing is I wonder if a suprapubic catheter is something the Doctor has considered if a normal catheter is problematic? Or perhaps intermittent self catheterisation?
Hope this might help in a small way.
Hi Doug,
I am very happy to have found your blog and this post about exercising with catheter.
I am 59 and I have had a indwelling catheter for 6 weeks since now due to urinary retention has I have an enlarged prostate.
At the moment is not clear how long I should keep the catheter and witch kind of operation is the right one for me (turp, holep, rezum).
I suspect that I will keep the catheter for a rather long time, waiting list in covid-19 era my be longer than usual.
Now I am using a a flip flow valve and moving is much better the with the bag.
By now I only walk but I want to give a try to do a light jogging in the next days.
Your post is very useful and give me more confidence that is possible to do it.
Cycling at the moment, I am sure, is not an option for me, what about swimming? Do you have any experience in swimming with catheter?
I am Italian, same problem here, doctor tell me that exercising is important but is very difficult to find out what can be done and how, some time I thought I was the only man under 90 with this problem/doubt on earth.
Hope I can go back swim, running and cycling in a few month, I have had great expectation for my sixties, in the last month priority changed a little bit…
Hi Umbi
Many thanks for finding my blog and joining the conversation here. You know this has become my most popular blog post and the one with the most comments – I had no idea it would go this way!
To answer your question about using a flip-flo valve and going swimming, I think it might depend on how reliable the design is. It is most important to prevent any swimming pool water, or sea water, enter your bladder. I guess that could lead to infections which could quickly become serious but ask your Doctor if you can.
Myself, I would be cautious. It is good to exercise but important you do this in a safe way.
Hope this helps. As you will have found out, there are plenty of men under 90 who have this difficulty – I was 56 when I had this issue but happily that is behind me.
Good luck with your forthcoming operation and treatment. Please leave another comment with any progress or updates.
Best wishes
Doug
Hi Umbi,
Have you tried the intermittent catheter?
Bill
Hi Doug etc,
You’re right – there seems very little about exercising with a catheter, so a big thanks for starting up this forum / blog!
My background is not too much different to yours, albeit a couple of years older (just over 60), in that I’m a regular runner and play a variety of sports, and retired at 59. All was going really well with my running, and as far as I was aware, with my health, other than a slight tummy bulge. Cutting a longer story short, I ended up being diagnosed as having acute urinary retention and had an indwelling catheter put in a few months ago! *Seriously* uncomfortable the first time it was put in, though second time (after camera had been put in / taken out) was slightly more bearable. Due for another follow-up for a further test, soon, after a couple of delays due to covid lockdown and UTIs (on 3rd course of antibiotics in 3 months)!
Anyway, I wanted to try keeping running, and as I have a flip flop valve (tap), rather than a leg bag, it seemed possible, even if a little bit uncomfortable. Cue a couple of short runs, but the main issue I have is that each time I run, I end up with blood in my urine next time I urinate. I assume it’s due to the catheter scratching the inside of my bladder, which is a bit worrying!? I previously ran up to 2 hours (half marathon plus), but I have limited myself to 5k (did one 10k), which is around 25-30 minutes, and variously tried with an empty bladder and a partly full bladder, but results seem similar.
Wonder if anyone has any tips on minimising / reducing / avoiding these issues!? Spoke to the doctor who did the camera investigation, briefly (NB: apparently, my prostate is not especially large, but it is growing inwards a bit – not yet sure of final prognosis, hence further tests), and he showed me reddened area where the catheter rubbed (I’d done a run previous day), but, he did not seem overly concerned or consider it especially unusual. I’ll ask again when I go back for my next test, but if anyone has recommendations/suggestions for a more comfortable run w/o damaging the bladder, I’d be pleased to hear them.
Many thanks.
Hi Marty
Many thanks for finding my blog and for leaving your comment. As you can see by the earlier comments, there is a significant number of men in our age group who have the same problem.
It’s good that you’re able to use a flip-flo valve and continue to enjoy the benefits of exercising. With regard to the catheter scratching against the bladder wall, I think I only had that once but I can see how it is a real problem. It sounds as if you have experimented with an empty or half full bladder when exercising. I do remember the consultant saying I should run for a maximum of 30 minutes each time, even though I could run much further; perhaps he knew there was a possibility of it scratching inside you?
Is it worth asking your consultant / doctor / nurse if they could suggest a different type of catheter? I think some have a pointed tip and others are more rounded. The rounded ones might suit you better. Worth asking as I’m sure they’ll approve of you wanting to stay in good shape.
I guess the main issue is to have your prostate treated as soon as possible so you don’t need to have a catheter inside you. I know it’s frustrating but it will only be for a ‘season’ and hopefully it should then be resolved once and for all.
Hope this helps?
Many thanks for your reply, Doug – appreciate your thoughts. 🙂 Also (based on your blog), hope your running is more back to normal, soon?
An update on my situation / query – which was essentially my worries / seeking advice about blood in the urine after running with a catheter! The issue appears to have sorted itself, in that I’ve gone out running a further 4 times (albeit never more than 6k / 30 minutes); so far, no more blood. 🙂 The difference is either that I’ve allowed my bladder to be fuller, or .. it’s something else (maybe my body is getting more used to it, perhaps)?
Meanwhile, I recently had my next ‘test’, a urodynamic study, which involved measuring bladder fullness, removing the catheter (my 2nd, been in about 7 weeks or so), putting in small temporary tubes / catheters, front *and* back, slowly filling me with saline until I felt the need to go, then measuring the flow / volume. Then tubes back out and new catheter in, and fully drain the bladder, again measuring amount left. That data will all go to my Consultant, who will determine the next course of action – maybe a prostate operation?? The new catheter has been a tad uncomfortable and slight leaking around the tube, but, seems to be settling in now, after a few days. I’ll try going back out running as soon as I can, but will maintain the slightly fuller bladder. The other thing the nurses who did the urodynamic test said, was to get a prescription from my doctor for some replacement flip-flow (?sp) valves, as they recommended they be change every week or two, to help reduce incidence of UTI – this was something I’d not heard before.
Interesting you mention UTIs alongside the flip-flop valve. I acquired my first valve by going into a pharmacy and explaining the problem I was having in trying to run with all the extra tubing. They came up with the valve (actually it had been in stock for many years and had passed the ‘best before’ date and so they gave it to me, free of charge). The second was eventually given to me by the hospital.
I used to keep it clean by sterilising in a Milton solution – I figured if Milton was good enough in sterilising baby feed bottles, it was good enough for me. Mind you, I did have a couple of UTIs when I had an indwelling catheter!
Anyway, hope you are able to continue running and keeping fit ahead of whatever treatment is best for you Marty.
Keep in touch with any updates!
Hi, I’m a Leukemia & stem cell transplant survivor. I have Intersticial Cystitis(IC), my bladder shrunk after the chemo/transplant to only be able to hold 100 ml which is about the size of a specimen cup. When the bladder overfills, the walls start to crack & bleed and causes extreme pain. So I have been on a Foley catheter for almost 6 months now, to keep up with my kidney output & giving my bladder & ureters a break. I was an avid cyclist, and biking with my guys from the shop. They mentored me & are the reason I was in such great shape to be able to survive the AML. Have not been on my new bike since my transplant in Sept 2016. Have not come across any solutions other than getting off the catheter & having to go to the bathroom every hour to hour & 1/2 (plus wearing Walmart brand of Depend type underwear). Tried doing self catheter & ended up with severe UTI, and the start of kidney failure in Sept. which is why I’m on the catheter. Have been trying to resume to an active life and haven’t come across anything for female cyclists. I can only do walks, right now without pain. Looking for suggestions.
Hi Lydia
Thank you for leaving your comment on my blog, that’s quite an ordeal you’ve had.
Being a man it is hard for me to know how a catheter etc will feel, or really appreciate the situation you’re in.
However, taking those steps to stay in good shape is definitely the right thing to do, for all kinds of reasons.
Have you tried an alternative to a bicycle at all?
A few years ago I had a go on an Elipitigo which I talked about on another blog – https://thecyclehub.net/elliptigo-8s-an-impromptu-test-ride-review/ or even the Halfbike which I have been using recently and having fun with.
The Halfbike is great for all round exercise but not good for using in heavy traffic, steep hills or long distances – https://maturingwell.co.uk/index.php/2020/12/07/halfbike-adventures-in-toddington/
Hope this helps?
Hi again,
Another quick update from me – my running is going quite well, and done a couple of 7.5k runs.
Admittedly, got a small amount of blood in the urine after the latest one, but, it was the first I’d
tried for a while with an almost empty bladder, so .. it seems to confirm the theory that keeping
the bladder partly full helps!! The nurses at my latest test thought blood would be due to rubbing
in the urethra, but I’m not sure my experience bears that out, and still thinking it’s maybe due to
the catheter slightly scratching inside the bladder, otherwise wouldn’t the blood seep *around*
the catheter!? Anyway, whichever, I’ll resume the partly full bladder approach which seems to
work – I’m guessing due to dampening and /or lubricating the movement of the catheter!?
In terms of my prognosis, I’ll seemingly have the catheter in for a couple more months, when I
have an appointment to see the Hospital Consultant, when he’ll hopefully tell me what happens
next, and when!! Hoping it doesn’t get too delayed by other events!?
Hi Marty,
Many thanks for your update, glad to know things are broadly okay.
Perhaps a shame you will need to retain the catheter while you wait for the next stage of your treatment. At least you manage it well and in the grand scheme of things you could do a lot worse.
I’ll probably mention in my next weekly update (will publish over the next day or so) that I have another UTI. Seems to go with the territory. Anyway glad to hear from you again and all good wishes for Christmas.
Hi again – further update from me (I sometimes wonder what happened with others who post once)!?
Running is going well, and I reconfirmed that leaving my bladder partially full seems to stop me getting blood in my urine through the catheter, so will stick with this method – latest run was 9k, and my fastest 5k time since I’ve had the catheter, en route. You mentioned UTIs, and also showed your use of a home, dipstick test kit. This was news to me, and I now have myself the same one, but yet again, I was never really told anything by the hospital or doctors about UTIs, urine test kits, or really anything much about using and living with a catheter – which seems something of a general issue!! Like you, I have *another* UTI, though my symptoms differ, in that for me it’s cloudy/discoloured urine, which smells, some pain/discomfort around my ribs/waist/hips, but definitely no feeling cold or particular fatigued (other than normal running tiredness). [NB: My wife had those two symptoms, on and off since January, and we even wonder if it could be “long Covid”?] So, sent off my specimen to the surgery and await them prescribing antibiotic, which will be the 4th course in 4 months, although the first two were largely ineffective (and I have no ‘spare’ supply to use). Meanwhile, my hospital appointment with the Consultant is not until 4th February (arranged pre Tier 4, so hoping it does not get put back any more, as that’ll be almost 6 months with a catheter, and who knows long after that), still with no definitive prognosis until then, I guess!! Not even had the same doctor/consultant twice, so far !!
However, despite all that, doing ok, the running is improving, hopefully the antibiotic will kill off the UTI, and going to make the best of Christmas in Tier 4 – including seeing the grandchildren via video call, instead of in person. Hope all are managing ok, too, and wishing all a happy Christmas and a better New Year. 🙂
Hi I’ve recently had a catheter I’ve always been active, Army, marathons and now wild camping. Not sure how long I have the catheter for but I’m desperate to go wild camping this winter. I don’t normally walk far but often camp in the woods under a tarp with bivvy bag or sometimes in a tent. Would this be possible with a catheter?
Hi Kevin
Thanks for your comment and finding my blog.
As others have said below, the main concern in terms of looking after your catheter is hygiene. That must become tricky if you’re wild camping, although you don’t say what country you’re in.
The last thing you want is a Urinary Tract Infection (UTI) and these can often occur with a catheter.
Make sure you know what the symptoms of a UTI are!
Having some antibiotics in advance might be helpful but I’m not sure how every Doctor would react to such a request. Some might only want to prescribe antibiotics when they know you have an infection and also what kind it is – different infections / bacteria require different antibiotics.
You can help avoid infections by keeping good hygiene standards, not sure how easy this will be for you. Also to make sure you drink plenty of water, to keep your urinary tract well flushed through.
As Marty has said below, you can do most things with a catheter. You will know your capabilities. There will be some risks, depending on how remote you will be and for how long. Myself, I’d been very, very cautious.
Hope this helps.
Hi Kevin,
It may be that Doug has other comments to make, but *in general*, I don’t think there is really much that is NOT possible, just because you have a catheter fitted. If you are comfortable enough with the catheter, then I can’t really see why you shouldn’t be able to go ‘wild camping’. Of course, it does also assume that it is permissable to do so, given any conditions of covid lockdown where you are, so you may have to wait on that account? You may wish to consider what you’d need to take with you, to keep the catheter (and flip flo valve, if it has one fitted) clean and sterilised, but not really any different to what you’d do at home! In my case, I’ve had my catheter for 5 months, and unsure how much longer (have a review next month), and now fairly regularly go running, up to an hour at a time, but never run on an empty bladder, otherwise I get blood in my urine after I run.
Hi,
Like many on here I didn’t really get much help on living with a catheter from those that put it in. To be fair they have other concerns.
I kept quite active when I had it in, but didn’t want to run with it, long walks yes.
The main issue there I found was keeping the catheter from chaffing where it goes into you (that’s a fairly sensitive part!) I think others are more tolerant than me. I did buy some undersized swimming trunks that held it all as firm as possible to reduce movement.
The other concern I would have in your case would be keeping all that area clean. Infections can find there way in along the tube which was sealed off before when you didn’t have it (outside surface and inside surface of tube). A good shower is essential each day (as normal but here it is even more clinically important).
I hope you don’t have it for long, but take care of it. Stay active but try maybe not so intensely until you get it out. I’m happy to help with any other tips.
Danny
thanks for this wonderful blogpost. Also kudos on such a nice blog. It is difficult to come across helpful info on this topic. Thanks for taking the time to be so straightforward and honest in your post. You have come a long way on your journey. Congratulations and keep up the good work.
Hi again, further update from me (Marty).
Catheter now in for almost 6 months (due to acute urine retention), with flip-flow valve. I’m able to run comfortably (it took quite a while, but guess the body slowly ‘gets used’ to it)! Runs of up to an hour+ are ok, though I never run with an empty bladder, otherwise I get some blood on my post-run pee. Even managed my first catheter era 10k under 50 mins.
Seen my urologist, following camera & urodynamic tests, and options he gave me were :-
1. Continue with catheter!
2. Have a TURP operation to release prostate pressure on the urethra. No HOLEP in my area, apparently! 🙁 Probable wait of 3 months+ ? Success rate around 80% in no longer needing the catheter post-op recovery?
Opting for the TURP, given HOLEP not used locally. Anyone have experience of a TURP operation, and whether using a general anaesthesia or a more local anaesthetic?
Otherwise, my main issue is repeated and/or recurring UTI. Very frustrating. No severe symptoms such as fever or headache, but an almost constant feeling of discomfort round the hips, but worst in the morning. Had 3 or 4 courses of antibiotics, which briefly clear it, but it soon returns as shown on dipstick tests (lycocytes & nitrites), but doctors are really NOT keen to prescribe, unless I have more severe symptoms!!
Hi Marty
Many thanks for the update. It sounds as if you’ve adapted very well in terms of living with a catheter, so well done.
Well done also for staying so active; I’m impressed! All I could manage was a 30 minute run before it became too uncomfortable but you seem to have it sorted well – running with some urine in your bladder sounds as if it has helped.
I hope everything goes to plan with your TURP operation. It does seem similar to the HOLEP operation I had.
As for infections, well I think this goes with the territory and has to be accepted to some degree. Have you tried drinking cranberry juice at all? From what I gather there isn’t much clear evidence around that it works and yet lots of people believe it helps. I think it helps keep infections at bay, but I can’t prove it. At least it provides some vitamin C and some antioxidants, not too many calories either.
I completely agree about avoiding too many antibiotics. As you know I need to use intermittent catheters and I am also prone to infections – cloudy urine, some discomfort etc. Generally these symptoms clear on their own in a few days, providing I increase my fluids.
Please keep in touch Marty – as before, I’m impressed with your running and seem to be taking the ordeal in your stride very well.
Hi,
Wow, I am so happy to find this blog relating to catheters and exercise, and to find this thread is still active. Thank you so much for putting it up.
It’s wonderfully consoling to hear from others who are struggling through this prostate/catheter thing –especially during this time when Covid has everyone so isolated.
I was feeling so stressed that I need to endure the catheter for three months waiting for HOLEP, and here you had to wait for seven!
I’m 68 and thankfully I’ve always been really active, alternating ‘resistance training’ with cardio, including mountain biking, swimming laps and mountain hiking –fortunately year round here in Arizona. I especially appreciate your advice to forget about biking, since I’d been considering trying it.
For me at least the first problem with the cath was the constant discomfort and frequent pain both in my bladder and my urethra – it took some time to mentally differentiate the two. I got a prescription for a drug called ‘Myrbetric’ that helps alleviate bladder pain by preventing involuntary muscle spasms caused by the internal irritation of the catheter tube. It’s worth looking into if you’re experiencing bladder pain like I have been.
I still get urethra pain and bleeding at the insertion point, though, which I find really disconcerting . When I contacted a Dr who was on call he replied ‘”As long as the catheter is draining OK it’s not a problem.” (Pain and bleeding is not a problem? Hello?) I spent four hours hiking yesterday and would have gone longer but halfway in I discovered I was bleeding badly again so I had to cut it short.
I wonder how others have dealt with this?
Thanks again!
Hi Ken
Many thanks for your comment in outlining your situation, and of course, for finding my blog.
It goes without saying that keeping up that active lifestyle is positive, in fact it sounds really good where you are! However, you mention bleeding, pain and a Doctor being indifferent.
If it were me, I would be concerned. If the bleeding is from the friction created by the catheter tube, that is something to avoid. I’m not a Doctor but I imagine that could potentially lead to all kinds of problems. You’ll see in an earlier comment (it might have been Marty) who mentioned how he exercised with his bladder being half full, this then stopped the tipped of the catheter rubbing on the inside of the bladder wall and causing some bleeding. I doubt if this is happening to you, unless you were “leaking” some urine as well?
To sum up, I think I’d be cautious, that’s my view but I also think it might be worth persisting with getting your Doctor’s advice. Please keep in touch, you’re having the HoLEP operation, just like I did – they said it was the most effective treatment and not available everywhere here in the UK, so I feel very fortunate.
Oh and before I forget, yes, I did have to wait 7 months. It would be even longer in these COVID times. Part of the delay was the suspicion of cancer, which needed to be investigated as that would have taken me onto a different treatment pathway. Thankfully I didn’t have cancer but it was tricky getting back onto the HoLEP waiting list. All okay in the end.
Hope all of this helps and thanks again for getting in touch.
Hi Doug,
Nice to hear back from you and thank you for the quick response.
It’s rather lonely not knowing anyone else in my situation, so it’s really wonderful meeting you and finding your blog
I noticed in one of your posts that you weren’t aware of the catheter 99% of the time, which is amazing! I wonder how many others have that experience? It’s almost the reverse with me –on the rare occasions I’m not painfully aware of it, I’m pleasantly surprised. Unfortunately every time I’ve brought up pain and bleeding, like I mentioned, I’m always told it’s ‘normal’. I’m scheduled to meet with the Urologist Thursday but if I’m still bleeding Monday I’ll give them a call.
By the way, in terms of exercise here’s something I’ve just learned that may be helpful to others:
They say to never allow the bag to go above your bladder in order to prevent infection by keeping what’s in the bag from flowing back into your bladder, because it may have picked up bacteria there.
I alternate leg bags, rinsing out the unused one with 2 parts white vinegar and 3 water and letting it hang to dry overnight. So when that bag is first installed after arising, I do back rolls and similar routines that require moving the bag above my bladder momentarily. The bag has little to no urine in it at that point and it’s been sterilized by the vinegar solution, so I’m assuming it’s safe –or at least at its safest point of the day.
Take care, and thanks again.
Ken – You mentioned about getting pain and bleeding, where the catheter enters the body, and that your doctor suggested it’s ‘normal’. I tend to agree with Doug, that it does *not* seem that normal, though you mentioned some fairly strenuous exercise and not sure how long you’ve had the catheter in? I’ve gone running ok w/o any bleeding as you describe, although as Doug recalled, if I run with an emptyish bladder, I get some blood in my urine afterwards – which I suspect may be the catheter scraping inside the bladder, but not at the tip. It’s got better with time, too, as I guess the body gets used to it, to some extent. That said, you also mention that you use leg bags! I can’t claim to not really notice the catheter, but it’s minimal at times, *however* I only used a leg bag for about 2 days after having the catheter put in (6 months ago), at which point I switched to using a *flip-flow valve*. This is much, much easier to live with, although I still had some soreness at the tip for the first few weeks, but found it helped massively to curl the catheter tube inside my underwear (rather than strapping to my leg), as it reduced most of the rubbing.
So, I’d ask your Doctor if you need to have the bladder continually emptying by it draining into the bag, OR whether you could use a flip-flow valve (easily obtainable on the internet, if you can’t get them prescribed), *rather* than a leg bag!!?
Not sure if your diagnosis is the same, as I’m due to get a TURP operation, effectively the same as HoLEP, but have no date as yet (maybe 2-3 months??) for my urine retention issue, as my local area in the UK apparently does not offer HoLEP, which Doug had, and you say you’re due to have. They seem to be effectively the same procedure, but with HoLEP having fewer side effects and a much shorter recovery time! I’m a bit disappointed about that, as I am not really not all that far from Doug (I’m in Milton Keynes)! Anyway .. hope some of what I’ve mention is of help.
Ken – Marty is right – it is not normal to be passing blood from a catheter. Please talk to your Doctor, or preferably a specialist in urology. Where is the bleeding coming from? What is causing it? Is there something wrong with the catheter, or perhaps something you are doing? Is there some other problem? Keep us posted.
Also, re urine collection bags. When I had a catheter, I had two types. There was a night time bag which I connected up at bedtime and it had a one-way valve, so once urine had entered the bag, it wouldn’t flow back. It held up to 2 litres and was for single use only (I would drink loads of water at bed time, fill up the bag while I slept through the night. Neat.) Secondly the leg bags. These also had a one-way valve. They were used for 4 days and then replaced, never re-used as you describe. Is it possible to get a supply of urine bags, so you don’t need to worry about re-using them? Also ask whether it is possible for you to use a flip-flow valve, as Marty and I have done – it helps with leading an active lifestyle but please discuss with your Doctor or Urologist.
Again, please keep us posted Ken!
Hi Marty and Doug,
Hey, thank you both for the input. Definitely will ask for a flip-valve when talking to the Urologist Thursday. I would never have known about it without this blog!
The bleeding thing has been a constant ordeal since a catheter first went in the day after Christmas –the bag itself doesn’t bother me at all by comparison. Using the 2-liter night bag is really helpful too. It always fills! No wonder I used to P five times a night!
A few days ago I discovered to my horror that my underpants were totally soaked with blood (with a catheter, you don’t often need to look there!) The bleeding is at the ‘insertion point’, which I’ve always kept cocooned in bandages to spare my underwear any bloodstains, but it soaked right through. I’d had a lot of blood in the urine during the day, and a lot of pain (both “normal”), but didn’t realize I was bleeding so much until the end of the day, when the bandage is changed. But it seems to have finally cleared up over the last two days.
Most crazy-making is having no idea what causes it. I’d spent almost the entire day before working at the computer, and got almost no exercise at all, which is unusual, so I assume it wasn’t movement.
Hopefully the Urologist will explain it all Thursday! I’ll let you know what he says.
I have no idea about tossing bags –I just happened to end up with a few extras and found instructions for sterilizing them with vinegar online! But it seems better than using them with some of yesterday’s pee still in them. So that’s another one on my “Ask the Urologist” list.
And thank you Doug for posting your progress through the surgery. While I was having the catheter removed (for the third time) I was able to overhear a nurse talk to what must have been a recent surgery-recipient in an adjacent room, which I’ll never forget: “The next two weeks should be pretty miserable,” she said. That night I was in the ER at 1AM not able to urinate again, for the fourth time. I suddenly realized that was where I was headed, so I appreciate any account of what to expect.
Thanks again!
Ken – I don’t believe you shouldn’t be getting any bleeding as you describe, there doesn’t seem anything ‘normal’ about that. I never experienced anything like that at all. If it were me, I’d be seeking advice as soon as possible.
Marty – Milton Keynes! You’re right, you are not far away, probably neighbouring health authority areas. It is curious that they do not offer the same kind of treatment and I dare say there’s a complicated explanation to that. I recall the Urology staff mentioning HoLEP was a relatively new treatment which was gradually being rolled out and not every hospital would have staff equipped to carry out such a treatment. I don’t know if it requires different equipment or not. Having said that, it goes without saying we must be grateful for any treatment, especially during these terrible COVID times. Hopefully things will fall into place for you to have your operation before too long Marty.
Ken – I guess you have read these posts but just to be sure, here they are:
https://maturingwell.co.uk/index.php/2018/11/05/my-pre-operative-assessment/
https://maturingwell.co.uk/index.php/2018/11/15/post-holep-operation-how-am-i-doing/
https://maturingwell.co.uk/index.php/2018/11/07/my-holmium-laser-enucleation-of-the-prostate-holep-experience/
Yeah, thank you! I just recently wended my way through them all.
It’s very helpful that you posted them.
Hello again Doug et al!
OK, on Doug’s advice I called the Urology office Monday since I was bleeding again, as I often do, where the catheter inserts into my penis (to put it politely). They said I could come in and talk to a nurse 9AM the following morning, so I went in this morning.
I was dreading another pullout and re-insertion but fortunately this time I got a super-nice, patient nurse (as opposed to a cranky, impatient doctor) who only wanted to helpfully answer questions.
Like before I was told that pain and bleeding are normal (!), at least for some if not most people (you were one of the lucky ones, Doug!) and the only alternative is having a hole drilled in the lower abdomen and through the bladder and the catheter run in that way, which sounds nightmarishly freaky to me. She said “People who get it say they’re glad they don’t have to deal with the bleeding and pain there any more.”
The other alternative is to just not move around, which takes us back to exercise. She said walking and moving around makes it worse because of the catheter irritating the urethra at the insertion point, like I had suspected.
I’d read KY Jelly helps, but I was worried it might be a cause infection if it isn’t antiseptic. After digging around a lot I found that although it doesn’t claim sterility it does contain chlorhexidine, an antiseptic. But the bottle that I got is big and fat and dispenses big blobs of the stuff. So I found a similar product that boasts it’s antiseptic called Surgilube, which also comes with a much smaller opening so I’ve been using that. BUT I still get bleeding.
The nurse recommended ‘Aquaphor Healing ointment’ and said it wasn’t important that it doesn’t claim to be antiseptic. I already had giant containers of that (for skin cracks) so I bought a small tube and I’ll try it instead.
She recommended twice a day only, saying that it was important to let the area dry out.
Also, by the way, there’s bladder pain as well, which my future surgeon told me is also ‘normal’, from an involuntary muscle spasm reaction of the bladder to the catheter. He said it’s actually a good thing (I should put that in quotes) because it means the bladder is contracting normally. He prescribed Myrbetriq, which I’ve mentioned before, that has helped. It’s a once a day pill, and what seems to happen is that once it has calmed down (or conked out) my bladder I can stop the drug for a day or so before it gets annoyed again.
Another Dr, the one who told me “Pain and bleeding aren’t a problem as long as the catheter is draining normally” (as if I were a lab rat) recommended an over-the-counter ‘urethral pain killer’ called AZO, which also helped but turns your urine a neon orange color than will stain anything it touches. It’s not cheap either but fortunately the drug store had a ‘generic’ version at less than half the cost.
Hopefully this is helpful for anyone who has to deal with pain and bleeding from a catheter and still wants to get up and move around. It’s been so bad sometimes it’s really made me crazy and I learned from having third degree burns over 14% of my body 10 years ago that I can handle a LOT of pain and bleeding –though, I now know, only if I know it’s part of recovering. Waiting on hold for weeks until the Dr can fit me in for surgery turns out to be another thing altogether.
Glad you got chance to ask questions and get responses, KEN. Did you get around to asking whether you could have a FLIP-FLOW VALVE for your catheter, as well as the leg bags?? I really think that unless you are required to have the bladder *constantly* emptying, that the flip-flow valve could *really* help you a lot (including maybe use the valve during the day, and switch to the leg bag overnight) !?
Regarding the bleeding as you describe, it still does NOT sound normal to me, and not heard of anyone else who has that much bleeding? It sounds as if you’ve developed a cut or tear near the end of the urethra – presumably due to all the irritation and rubbing of the catheter tube, especially when you try to be more active! In that scenario, even after a quiet day, a smallish movement or pull could open up the wound again? If the tube is quite tight, e.g. attached to your leg bag, or to your leg via a leg strap, and keeps on rubbing, it may just keep opening up the cut – never allowing it to heal. Again, if you were able to use a flip-flow valve, you could curl the tube & valve up inside your underwear, which really minimises the movement / rubbing. Maybe that, with a period of relative inactivity to allow the cut(s) to heal, might do the job??
For me, I have never had *any* bleeding from the urethra, at all; just had a small amount of blood coming out through the catheter in my urine, and only if I’ve been very active on an empty bladder – which I therefore feel has to be the inside part of the catheter rubbing either on the bladder wall and/or at the inside end of the urethra? Otherwise, surely any blood would seep out around the catheter!!?
Hi Marty,
Thank you for the suggestions and concern.
I finally got to talk to my Urologist today -as soon as he walked in the room he asked “Why am I meeting with you? You’ve scheduled surgery for April 8.”
The appt with him had been set up two months ago, by him, and I was only able to get surgery scheduled by emailing the office and asking, after having had a new catheter put in for the fourth time at 2AM in the hospital emergency room six weeks ago, “Would someone PLEASE tell me what’s going on?” Welcome to medical care this side of the pond.
I asked about a “flip flow valve” which the Urologist seemed to have never heard of. Instead he gave me a simple plug and told me in my case it’s fine to go an hour or so with the plug in place.
But as for exercise, I’m doing less and less despite myself because of the bleeding and pain. When I went over all that with the Urologist it was again shrugged off as typical. Even my dramatic account of completely blood-soaked underpants last week didn’t affect him at all. He did say he’d try to get my surgery date moved up, which is at least something.
The Urologist on call two weeks ago suggested slathering the insertion point with ‘KY Jelly’, which I immediately tried, though I eventually replaced that with hopefully more antiseptic ‘Surgilube’. Then the nurse a couple days ago said Aquaphor was better, so today the Dr suggested Bacitracin. Which kind of takes me back to my first catheter installation at Christmas, when I started using Neosporin, which the ER doctor later said I shouldn’t use.
I did hike, not hard, for a couple hours today, so we’ll see if I’m bloody tomorrow. Meanwhile the catheter hurts constantly, sitting or hiking or whatever though being convinced it’s ‘normal’ does take some of the stress out of it.
By the way I should mention that the bleeding is at the urethra where the tube enters the penis. The leg bag doesn’t bother me at all –it’s only a problem if I do any kind of exercise that requires moving the leg bag above my bladder, which is verboten.
Hi Ken
Sorry not to have replied sooner; I’ve been busy with my mother visiting and also (drum roll) getting used to my new computer.
Sorry also to repeat what was said earlier, by Marty and myself – the bleeding you describe cannot be “normal”. I have no idea what can be causing the problem but if it was happening to me, I’d be worried it could develop into something else. Most surprising the Urologist didn’t know of a flip-flow valve. A simple plug seems a bit basic but it’ll do the job.
As a matter of interest, I believe catheters come in different sizes and I wonder what you have? I think the standard size is 14ch, which I don’t know what that means other than being 4.7mm. I wondered if it was too narrow, could that be cutting into you somehow? Apologies, I know that’s a bit gruesome.
Otherwise, at least 9th April isn’t too far away. So if you stop exercising until then, it’s probably not the end of the world, although you might think you are better off in continuing to exercise.
Also I remember while I was waiting for my HOLEP operation, I had an appointment beforehand. This was to measure the volume of the prostate, to inform the operating staff more of what they were dealing with. When I had this examination, they suspected cancer which triggered urgent investigations (MRI and CT scans, plus biopsies) but thankfully no cancer was discovered. Have you been checked out at all?
Hi Doug,
Nice to hear from you! Thank you for responding and no worries about any delay. I’ve been a happily tied up with work myself lately.
Unfortunately, unless I’m the victim of an insane Facebook-like conspiracy, the bleeding thing is fairly normal. It’s what the Urologists and the nurses tell me, and here’s an example from a website:
“You may see some blood or urine around where the catheter enters your body, especially when walking or having a bowel movement (pooping). This is normal, as long as there’s urine draining into the drainage bag. If there’s not, call your healthcare provider.”
https://www.mskcc.org/cancer-care/patient-education/caring-your-urinary-foley-catheter
So you were fortunate despite having to wear the catheter for so many months that you didn’t have pain and bleeding. Thankfully I haven’t had any bleeding for the past few days, and I’m trying to understand what triggers it.
Which brings us back to the subject of exercise. Doing floor workouts like back rolls and abs may be triggering it –at least since I’ve quit doing such things every morning I’ve not had any bleeding. Walking/hiking doesn’t seem to be the problem since I’ve been doing that the last several days with no bleeding resulting.
The urologist pointed out that my prostate –which was measured at 150cc –is growing into my bladder, which, he told me, cramps the end of the catheter against the inside of the bladder (which instigates the bladder pain), and, if I recall rightly, that also irritates the urethra where it goes through the prostate, and that’s the source of most of the bleeding. So doing a lot of moving of the wrong kind may be the problem.
I’m really thankful as well that they’ve never felt that cancer was involved.
In terms of exercise also, by the way, the urology office gave me a few of their ‘leg bags’, which attach directly to the catheter and are strapped to the thigh. The ones I’ve been using came from the Emergency Room and attach lower down via a fairly long tube.
When I tried walking with the thigh-bag I immediately had a problem with the catheter pulling at the insertion point, which is a bit painful, like little stabs. So I went home and swapped it immediately for the ER bag, which was much better.
The thigh bag puts me off as well because my “sports” car has low seats, and since I’m about 2 meters tall it means my knees are above my waist while sitting in it. I know the catheter is not supposed to allow back flow, but if the bag is at my calf, like the ER bag, it’s below my bladder even in the car. So I prefer it for that reason as well.
Hi Ken
Glad you have a good dialogue with the medical staff. It is certainly worth experimenting with different types of bags if you have the opportunity – I received a number of different samples which was helpful. Having said that, I’m not sure how your health system works and what you would have access to over there.
I had a quick look at our NHS website. It is always written in a very easy, user friendly way. Here’s the link which says blood in your urine is common but nothing about bleeding from elsewhere.
https://www.nhs.uk/conditions/urinary-catheters/risks/
Really hope you can keep in touch as you approach your operation and you find the right balance in taking care of yourself in this difficult season.
Hi Doug,
Thank you for responding, especially so quickly!
I meant to ask you, since you had so few problems with your catheter, was your leg bag attached to your thigh or did it have a tube that required it to be attached lower?
I was hiking in the Superstition Mountains yesterday (a truly beautiful place, if you ever visit Arizona) and as sometimes happens, needed to pull a few cactus spines out of my leg after I went off trail for a while. It occurred to me that if I’d had a thigh bag, it would have been punctured! Though I could just as easily had spines in my calf, where the catheter was. So now I’m thinking of buying a couple extra and carrying one with me, along with extra alcohol wipes.
Again in relation to exercise, I also wanted to mention the ‘flip flow valve’, which my Dr had never heard of. He gave me a simple plug instead but now I’m wondering, ‘How would this work?’ If I had the plug in for an hour or so while doing whatever and pulled the plug I’d immediately get maybe 200ml of urine pouring out the catheter, where it’s attached against my leg with a ‘Statlock’ pad. I could simply open that lock and pull out the catheter, then pull the plug over the toilet and drain my bladder, but pulling on the catheter directly makes me a bit nervous. (I have to confess that even after two months I still find wearing a catheter to be unnerving.)
Is that how you used the flip flow valve? Did it have an extension that meant you could leave the catheter tubing in the lock?
Thanks again.
Hi Ken
No problem. I don’t normally respond as quickly to messages but I happened to be online when your last message came in. So here’s a few thoughts in the order you ask:
The bottom or tap of the leg bag was just above my knee, held on by velcro straps. I did experiment with a long tube so the bag could be nearer my ankle (useful when hiking and needing to discreetly drain it!).
No, never been to Arizona but I have a flight booked to California in May, pending COVID. I think I might need to move it back, owing to current UK COVID travel restrictions.
Re Flip-flo valve. A plug is a bit basic but I guess it would do. Even Amazon here in the UK sell the flip-flop valves, maybe they do in the US? See the link for what’s on offer here:
https://www.amazon.co.uk/s?k=flip+flo+catheter+valve&crid=2YR8NQQ0J12LH&sprefix=flip+flo+%2Caps%2C147&ref=nb_sb_ss_ts-doa-p_2_9
The valve simply plugs into the catheter, where you would normally have a bag plugged in. Make sense?
Hope this helps?
Hello Doug,
Thank you for the information and I hope you’re doing well.
My HOLEP is scheduled for Mar 30 and, after an online talk with the surgeon, they want me to come in tomorrow to switch from the catheter to self-catheterization. Like you’re doing, aren’t you? He was saying it would just make it easier for me, which makes me wonder why it wasn’t suggested weeks ago –a couple urologists other than mine had suggested the same thing previously.
From using a ‘night bag’ I’ve learned I normally urinate 2 liters per night, sometimes a bit more, so I’m concerned about having to get up at night to self-catheterize. The Dr said I should just not drink so much, which I don’t think will work. Actually I think it’s not unusual for 68, due in part to water retention during the day, plus the experts all tell me drinking 3 litres per day is optimal.
How do you handle it? Do you produce that much urine per night? I confess I’m a ‘big person’ at 2 meters, though I’m not fat, so perhaps it’s also a matter of scale.
In the meantime I looked at a new procedure called PAE, “prostate artery embolization” but the PAE surgeon said a couple of things that put me off it. First, chances are it will need to be redone in ‘4-6 years’. (I really really don’t want to have to go through all these catheterization and urination problems again.) Second, I’d need to stay in the catheter for weeks after surgery until the prostate shrank enough. The good part is that it didn’t involve real ‘surgery’ like HOLEP, which hacks away at things, and only required a catheter, to block arteries.
In terms of exercise, for what it’s worth, I’ve finally found the best position for the leg bag when hiking, after two months of wrestling with this thing: it needs to be well in the side of your leg, and the bag is better if the top part is pulled to just above the knee. That will keep the tube bent forward, toward the knee, rather than allowing it to bend back, which caused the thing to twist in my urethra, which was really painful.
Hi Ken
I’m replying separately to your comments since you’ve raised quite a few points.
Glad you can switch to self cathing as it’s much easier and avoids all the extra plumbing and hassle. My guess is that the surgeon has wanted to keep your bladder empty to enable it to recover it’s normal size – but I’m only guessing as an ordinary person who happens to have gone through a similar experience.
Re HoLEP – this was explained to me as being the most suitable treatment for me at the time. My local hospital had the facilities and, at the time, were amongst only a handful of hospitals able to offer the procedure. The HoLEP procedure was done under general anesthetic and therefore I was totally out-of-it. I was told it took almost 90 minutes from start to finish and almost all of my prostate was removed. As I recall, recovery is pretty good and I’d go along with that, based on my own experience.
Regarding fluid intake, no more, no less than normal amounts to remain healthy. Having said that, when I did have an indwelling catheter I did have a large drink of water at bedtime and this would naturally pass through at night, filling the 2L bag by the morning. Nowadays, I sometimes need to have a pee towards the end of the night but this is no big deal since I instantly fall back to sleep!
Hope this helps Ken and naturally I (and I’m sure many others) will be interested in your HoLEP experience – you could do a guest blog post?
Hi Doug,
Thank you for the info –I’m glad to hear from someone else who does 2L per night! Now I see why I used to go 3-4 times per night independent of my enlarged prostate. For my weight I’m reading 2.8 liters/day is optimum, which has to be about what I do.
Consequently it looks like I’ll be doing the self-cath exclusively between going to bed and getting up, since that’s the only time I’ve had difficulty urinating, though I have no idea why.
For Doug or anyone else looking at self-cathing, in my case I was told be sure to do it before bed and on arising. So the first night I did it, for the first time on my own, just before bed and got only 50ml.
Three hours later I woke up having to go badly and, unlike during the previous day but typical for me at night, I couldn’t urinate at all. So I self-cathed and got 500ml. (And blood in the catheter as I was pulling it out.) Three hours later, same thing, and about 450ml. And three hours later, when I got up, another 450.
After that I was fine all day and didn’t bother self-cathing before bed since I was still urinating OK. So, same routine last night, only with about half the amount each time, though I have no idea why. Fortunately, no blood at all, so I assume that was left over from the ‘indwelling’ catheter I had previously, maybe caused by having been removed.
And sure, I’d be happy to do a ‘guest’ blog, though I apologize that I don’t know how.
Ken – I’m emailing you.
Ken – Doug may well add more about self-catheterisation (which I’d also be interested to hear, as I might still end up down that route), though it’s never been mentioned to me as I near 7 months with my indwelling catheter, and still awaiting a date for TURP (essentially the same as HoLEP, but older method with a blade instead of a laser – given HoLEP is unfortunately not offered in my locality). Meanwhile, glad you have finally found a good position for your leg bag for hiking, and also that your operation date is now very soon! I know you asked about it before (without much success, and it’s probably moot, now), but *for me* having a flip-flow valve on the catheter meant I have effectively been able to avoid almost *any* movement of the tube inside, or even at the end of my urethra, in turn meaning zero bleeding there, and indeed, very little irritation and the end of the penis (after the first couple of weeks), so much so, that I can now run effectively normally up to half marathon – albeit a bit slower due to loss of training and repeated UTIs!! For me, the only precaution I take is *not* to fully empty my bladder before a run, as, if I run on an empty bladder, I get a little bit of blood in my urine through the catheter – which I guess must be from where the balloon rubs inside my bladder! I guess things will all change again for me once I have my TURP !?!
Hi Marty
Re self cath’ing – following enlarged prostate issues, the need depends on how stretched a bladder had become, how long and the extent it returns to normal, how much urine remains in the bladder having had a pee etc. I remember hearing that if a bladder was holding 2 litres or more, it won’t go back to normal. However as you have been waiting for 7 months, that will have helped your bladder to some extent, certainly wouldn’t have done any harm other than needing to practice those pelvic floor muscles!
Glad the plumbing is working okay otherwise; those UTIs go with the territory I’m afraid.
Quick thought Marty – you are welcome to do a ‘guest blog post’ on your TURP experience if you’d like to. Lots of people read this page and it might be helpful for others. Food for thought?
Hi Marty, I’m sorry but I actually meant to address my Mar 18 post re the ‘flip flow’ to you rather than to Doug.
Hi Doug, thank you for the information.
It’s great you can keep moving with the flip-flow valve!
I actually bought 2 since they’re not expensive and I had been planning on trying it since I still had two weeks left, but they’ve scheduled me for the self-catheterization starting tomorrow so it looks like I won’t need it after all. But it looks like a great idea.
One thing that bothered me is that it has an open end, which would allow for infection since it wouldn’t be ‘closed’ but the Dr had given me a plug, which I decided I’d use in the flip-flow to keep it sealed. Is that what you’re doing?
I don’t do running but I like to hike and thankfully I got in a mountain hike today for a couple of hours. I always end up emptying the bag while on the trail and all I need to do is unzip the boot zip on the bottom of my hiking pants in order to discretely drain the bag. Having the flip flow on my thigh would mean pulling down my pants entirely, which can be awkward on public trails.
Hi Ken
Self Cath is much easier all round and that’s been my situation for over 2 years now. However you are right, the system needs to be ‘closed’ to remain UTI free as far as possible. The flip flow valve was always considered good enough, no need for a plug.
Glad to know you’re heading in the right direction.
Hi Doug,
Yeah, self-cathing is certainly better than the almost constant pain, at least in my case, of the ‘indwelling’ kind. But hats off to you for putting up with it so well –it’s not easy!
The ‘flip flow’ valves that I got had an open tube at the end, which concerned me. I was thinking things could move into the tube itself so it would be better kept plugged and hopefully sterile, though maybe it doesn’t matter.
By the way have you talked with your Urologist about it? Mine says to expect the prostate to be reduced by about 80%, which would take mine right down to ‘normal’ size.
My Uro told me that the bleeding was mostly due to the catheter tube irritating the overtightened urethra inside my oversized prostate. The pain, he said, was from the end of the tube hitting inside my bladder, which they say causes ‘bladder spasm’ as in ‘YOW, THAT HURTS!! WHAT IS GOING ON?? WHY IS THIS THING IN HERE???’, which, unfortunately, is what my bladder has been telling my brain for hours every day for months now.
Hi Doug and Marty and hopefully someone else who finds this useful,
I thought it might be helpful to report in on doing self-catheter in my experience –I know Doug has mentioned his earlier.
It’s pretty freaky and scary! At least at first, and it was painful and a bit bloody as well, BUT in my case wearing the ‘indwelling’ catheter was painful and bloody almost the entire three months I was in one, so self-cathetering was still an improvement.
The best part is that it has gotten less painful each time. At first it not only really hurt the entire time pushing it in and pulling it out, it hurt badly for over an hour after. I realize now that my urethra was really a wreck -maybe just from having the ‘indwelling’ cath pulled out, but I suspect, from all the pain it gave me, that it was more than just that.
It may also be less painful now that I’ve had practice and, if anyone is looking at doing the same, my advice, as well as everyone else’s, apparently, is to TAKE IT SLOW! I mean be prepared to let it take several minutes to slide in and then out on its own rather than push it. The ‘hydrophylic coating’ in the tube is pretty miraculous (you have to pop a water package inside the packet holding the catheter prior to use –which is kind of odd) but it makes me grateful I don’t have to try to slather it with something myself.
My routine is to wake up, feeling like I need to go, two or three times a night, and do it then (since I pretty much can’t myself at night anyway), which has the advantage that I’m half-dozing, so I’m not impatient about taking my time with it. Otherwise I don’t seem to need it during the day, fortunately.
After three months of not being able to sit, or especially bend at the hip, without that catheter-sticking-the-inside-of-my-bladder pain, self-cath is definitely an improvement on the indwelling one and I’ve been biking a few times since.
I hope this is helpful!
By the way, here’s a helpful video I’ve found showing how to slide and intermittent catheter in:
https://www.youtube.com/watch?v=XR9VEE4taG8&t=148s
I’m doing it a bit differently, though.
I follow the initial steps in the video of holding the ‘slider’ with my right hand (being right-handed) initially and my ‘male member’ with my left, with, like in the video, a few inches of the tube showing and sliding it in to start that way. Unlike the video, when the slider reaches the tip of my penis, I move the bottom two fingers of my right hand down to hold it up keeping my thumb and fore fingers around the slider. I don’t move the slider up and grab the tube that way, I keep it against the tip and keep the tube straight with my thumb and two forefingers. That way I don’t risk touching the tube at all, and to me at least, it feels more comfortable.
Great blog, so many helpful comments. Am on indwelling catheter for almost 3 months with enlarged prostate, and after the urodynamic test, am presented with a future of self-catheterizing with a bladder that stopped working after being over-stressed with retention. Am active 67-year old, and every time I have been inserted with a catheter for testing, etc, it is extremely painful and I can’t imagine doing it on my own. Not sure if a turp is in my future or not, doctors are not particularly communicative, and seems every time they do talk it’s a lot of doctor-speak at the end of a session where I’m pretty distressed and not clearly thinking. Am scheduled to meet with another urologist in the system, so maybe can get a better idea of what this path forward may be, whether the pain is caused by prostate sensitivity or some other scar or damage from insertions. Otherwise, not particularly painful except for a few hours after being catheterized. Three UTI’s so far, but am taking D-Mannos and being a little more careful with sterilization.
Hi Stu
Thank you for leaving your comment and for your kind words about my blog.
First thought that springs to mind…. have your kidneys been checked? I asked because urine backing up into the kidneys can cause problems, as I have experienced the hard way.
Unfortunate that your Doctors don’t seem to be communicating with you very well. I always have a list of things I want to discuss and sometimes I’ll make notes of the discussion, asking questions as I go along. This helps as it focuses both of our minds and seems to work.
Here’s sending you best wishes in the run up to your TURP operation. Is that the only option for your treatment?
I am ambivalent about mannos for prevention of UTIs but cranberry juice seems to have something going for it. Have you tried that at all?
One kidney was damaged but still functions, they don’t seem to be concerned about them now that I’m draining, unless of course, an obstruction appears. Making a list and taking notes for doctor visits is a great idea, thanks! I’ll be asking the second opinion doctor about options in a couple of weeks, and will let you know what he thinks. D-Mannose has shown to be effective for me, I take a capsule that combines with cranberry, and sometimes drink cranberry concentrate with water. Are you still taking any prostate medication, or is it functioning at all? Going to be asking for a flip-flow valve so I can resume the casual jogging I took up last spring to help with cardio and lung function. Am finding that I miss the 2-3 mile runs!
Hi Stu
I’m glad you have had your kidneys checked out, although you don’t say the extent of the damage, which is fair enough.
From my perspective as a mere patient, I understand the thing to keep in mind is the knock-on effect as kidneys have a role to play in regulating your blood pressure and it’s important to keep that under control. The kidneys carry out numerous other functions, as I have discovered, and can’t help but be amazed at how finely tuned and balanced our body’s normally are.
To answer your question about my prostate, I have never needed any medication for it. Things came to a head very quickly, almost exactly 3 years ago. Since then I have had a HoLEP operation which reduces the volume of the prostate. So to answer your question, there’s not much of it left to function.
Doug, had no idea that kidneys related to blood pressure regulation, that helps to understand things better. Wish my doctor had mentioned that! Am seeing an accupuncturist tomorrow which might help re-set some of the balance.
That sounds positive Stuart. I don’t think there’s anything wrong in asking lots of questions – taking an interest in one’s own health has to be good thing to do.
Keep in touch with your progress!
Hi again, Doug et al,
I’m now up to 8 months since my (first) indwelling catheter was inserted (for urine retention), and this one (third) has been in since early December! I don’t really get much discomfort, and am in training for a Half Marathon in June ; whilst awaiting a TURP operation (no HoLEP in my area) to shave away some of the prostate, after a urodynamic study suggested my bladder, although pretty enlarged, is still working well. Operation date likely not before July, given the waiting lists! Like many, my main continual issue is UTIs. I was pretty good for the first couple of months, and then antibiotics soon sorted out a couple of instances, but, I’ve now pretty much had an *ongoing* UTI since around New Year!! Until about two weeks ago, symptoms were restricted to aching around my ribs and waist, and whilst I’d had two or three antibiotic courses during January to March, the UTI never really went away; merely decreased whilst taking the antibiotics (as tested out using a home dipstick urine test kit). The symptoms intensified a couple of weeks ago, with aching all over and a headache lasting almost a week. Finally got another course of a different antibiotic, and that has eased all the symptoms, and it reduced the lycocyte & nitrite levels to low whilst I was taking it, but the levels once again seem to be back up again after finishing the tablets. Local GP surgery have taken urine samples, so will see what they say when they test the latest (post antibiotic) sample!! Luckily, so far, the physical symptoms have gone away again (for now), but having the same catheter for four and a half months cannot be good, and the bacteria has likely colonised inside it!! I’m doing all the things that are recommended in terms of hygiene (well, mostly!) and changing the flip-flow valve, and stopped drinking coffee or eating anything spicy, and I drink cranberry juice and eat the berries, too – though unsure if any of that is making much difference, given I seem to have this ongoing low-ish level of UTI !!?
Marty
Like Stu, I’ve been a bit underwhelmed by the advice and ability to ask questions on the few occasions when I’ve seen a urologist (never the same one twice), but hopefully the GP (my doctor) will keep the UTI under control and symptoms will stay minimised, until I reach the top of the waiting list, hopefully in early summer time.
As for exercise, I’m still doing pretty well on that front, with lots of walking, running (albeit it bit less whilst I was feeling a bit more poorly, but better now) and I may try cycling, despite it not working ot for Doug, as I feel like it would be fine for me? I’ll let you know how that goes!!
Hi Marty
Good to hear from you again, I had wondered how you were getting on.
Very sorry to hear of the UTIs and you have my complete sympathy. If you have read my recent posts (April 2021) you’ll see I have been troubled by a couple of UTIs and at the time of writing I have a couple of days left on antibiotics. Fortunately I respond fairly well to them and, like you, I will be providing a sample for testing to make sure it is all clear.
I think you have done incredibly well in running so much. The most I could do at the time with the indwelling catheter was 30 minutes before it became too uncomfortable. My half marathon time was typically around 1:40 to 1:50 and I would hate to try that time with a catheter. So I take my hat off to you Marty.
Also it’ll be interesting to see how you get on with cycling. While you have picked up that I couldn’t cycle on account of the pain, perhaps you might? You might have seen a recent comment from (?)Janice to Janet concerning her elderly father-in-law who faces having to give up cycling. If you scroll up and find her comment, you might be able to add to it with your experience.
Here’s hoping your operation won’t be too far off now, tricky during these COVID times. Keep in touch Marty!
Doug.
Hi Doug (& others) – Update from Marty!
Quite some time has gone by since the last comments on this subject!!
A fair amount has happened over the last 3+ months, but I’ll try to summarise (?) :-
o Still awaiting my TURP operation – last update was at the end of June*, where they advised I was on
the urgent list, but it might not be until August-ish, partly due to staff shortages! Well, it’s August
already and still no operation date, so I will be chasing for an update next week. The anniversary of
getting catheter number 1 will arrive at the end of August, so I’m hoping the operation cab be soon!
o I did try a little cycle, and it seemed to be ok – though I did not go all that far or fast – but no pain.
o Had something of an emergency at the end of June*. My catheter (number 3) had been in for almost
*7 months*, and I noticed it was draining more and more slowly .. cue it finally blocking completely
and I had to go to A&E at 2am in the morning, after being unable to empty my bladder for about 16
hours. Ended up waiting for about 4 hours, getting *extremely* uncomfortable (more so as time
went by), awaiting the doctor, before they finally took the old catheter out. Cue another hour before
they put a new catheter in (first doctor failed, and had to get a urology doctor to do it), & my bladder
could finally start to empty – mostly blood, after all the attempts to remove the old / insert the new
catheter – but finally some relief!! Imagine being desperate to go, but unable to, and this lasting for
several hours, including catheter removal and insertion! Blockage was apparently due to crystals
forming, blocking the drainage holes on the inside end of the catheter!! My ribs and torso were
*incredibly* sore for several days afterwards!!
o In slightly less dramatic news, my running *had* been going well – culminating in completing a
Half Marathon (1 hr 43m) in mid/late June {a few days before the emergency, but the blockage had,
in retrospect, been slowly getting worse *before* that, so appears not directly related.}
o Since the new catheter (number 4) has gone in (apparently this is a ‘curved’ catheter, this time), I
have had increased issues with blood in the bladder when I run. Previously, I could keep the bladder
about half full and run without issue, but with the new catheter, that technique has mostly failed!!
As such, I am scaling down my running for now, as it cannot be good to get a bladder full of blood
most times I go for a run – it might be causing some damage – though I will try the odd parkrun.
Anyway .. onwards and upwards. 🙂
Moral – If your catheter starts to drain *much* more slowly, get *straight* on to your doctor or your
District Nurse (or equivalent), to get it changed *before* it blocks 100%!! I will be on to my doctor if
this catheter is in for nearing 3 months, even if it seems to be ok! It will also help with clearing UTIs,
as the one good side-effect of getting the new catheter has been no recurrence of a UTI for 6 weeks,
so far – longest ever without! Failing to get a slow draining catheter changed before it blocks could
result in a very, very painful and stressful time in A&E, and I would not wish that night on anyone!
Marty
You have my complete sympathy for going through full retention all that time at the clinic and not getting relief when you needed it. My blood pressure would be setting off alarms. After being on an indwelling catheter for 4 months, and getting it changed out a few of times (included are the camera procedure and bladder test) I finally was able to tolerate self-cathing where it had been excruciating. With no self-voiding happening, this is my routine for the present and future, apparently surgery open the urethra won’t help much if any. Marty, may you find a way to keep doing the activities that help you thrive, and may that TURP date bring you relief. That is our goal, to bring some semblance of quality of life to life.
Marty – thank you so much for the update. Goes without saying I’m so sorry to hear you are still having to wait for your operation. Having said that, I guess the delay is down to COVID which although it must be frustrating you, it must surely be understandable? You are certainly being tested.
Like Stu writes, you have my every sympathy. I can remember the blocked catheter experience from 2018, when I had the same indwelling catheter for a few months. Although unpleasant and increasingly uncomfortable, I did find the District Nurse service was always very responsive, they regarded it as an emergency and call at our home to change it over.
Hey congratulations on that half marathon time – that’s great. From memory, I used to achieve about the same time but it’s going back 5 or 6 years. Extra kudos to you for running with a catheter. Please remind me, you had a flip-flow valve?
All the best to you Marty, and you too Stu. Please stay in touch!
Doug
Hi Doug & Stu (et al),
Many thanks for the responses (and sympathies!) – very much appreciated.
Stu – sorry that an operation was not a viable option for you, but glad the self-catherisation became
‘bearable’ (I may 20% end up in the same boat)? Yes, catheter changes aren’t pleasant, and I too had
changes to 2) camera, then to 3) urodynamic study, but then the long gap of 7 months (undoubtedly
mainly due to the covid impact) before catheter 3 blocked completely, and emergency visit to A&E!!
Getting a tad worried that flow from catheter 4 is *already* slowing, after just 6 weeks, so trying to be
proactive (not always my strong point!) before another emergency!!
Doug – yes, I use a flip-flow valve; I doubt running, as I have been, would’ve been possible with a leg
bag. I was pretty pleased with my time – considering!! I was 3rd O60, despite slowing in the last 3
miles, when I’d been on track for about 1:41-ish. Frustrating that my new catheter is not being as
tolerant as the previous three (maybe as it is a ‘curved’ one???), but hoping number 5 is better, &/or
the TURP operation comes along soon. Last year (pre-catheter) I was in shape to run sub 1:40, when
I got diagnosed, so also a bit frustrating, but will hopefully get back on track after the TURP. 🙂 Glad
you are enjoying your running, and good luck with everything. See you at a parkrun some day?? 🙂
Marty
Marty – yes it would be nice to meet at a Parkrun. Any suggestions?
Hi Marty
I will reply more fully but for now I have a suggestion regarding your catheter situation. When I was in the same position I had a rant at the District Nurse who simply asked if I’d like to try a “bladder wash”.
I had never heard of this before and it’s something a Doctor has to prescribe. In essence it is a small sachet of clear fluid (saline with a dash of acetic acid?). It took several phone calls between the Doctor and the District Nurse to get this organised as the Doctor had no idea about this and needed guidance on what was needed. Once the prescription was supplied, I had only one sachet, instead of a box of them. You squirt it into an empty bladder through the catheter, allow a few minutes and then drain off in the usual way. This can be effective in stopping the gunge accumulation which can cause a blockage.
Hope this might help?
Hi yet again,
Another *interesting* day!! Ultimately successful, but a tad frustrating and I’m feeling rather sore!
As it happens, I had called my local Doctor’s Surgery, and asked about changing the catheter, and
mentioning the possibility of the District Nurse. They called back, and seemed surprised I was not
in contact with the District Nurse service, already, yet they were the ones who were supposed to
have advised me about it, after the Hospital informed them I had an indwelling catheter!? Anyway,
they arranged for a District Nurse to come to my house to change the increasingly blocking catheter
number 4 (only been in for 6 weeks) – great. Nurse arrived and the old catheter came out without issue. Unfortunately, she had no joy after 2-3 minutes trying to put in the new catheter – one with
a straight tip, not curved, but she seemed to dismiss any real difference? She was very efficient, and
clearly had many calls to make, but left me without a catheter, and told me I’d need to go to Hospital
Emergency (A&E) for them to put in catheter number 5, as she was worried she might cause more
damage if she persisted trying. So, off to A&E, and it was apparently a 7 hour wait to see a doctor!
Fortunately, during Triage, discovering my history, they fast-tracked me (just 3 hours) to get the
new catheter inserted. A very confident nurse did the job, finding a curved tip catheter, & she also
showed a trainee doctor through the procedure. Job done, but quite a lot of blood from the urethra
from all the failed/successful catheter insertions, and I’m very sore, but good to go with catheter
number 5 successfully draining well. Phew, it’s exhausting! Next need to chase up on my operation
date, as they were unable to tell me at the Hospital, as the people who would know had finished for
the day (it was about 6:30pm by now, having gone in at about 2:30pm).
Thanks so much for all the information, and I’m somewhat frustrated that I never got told half of
what I ought to have known, at the start (although I guess in ‘normal’ times, there would not have
been such long delays, and so 12 weekly catheter changes and catheter blocking would not have been
such significant matters). That said the District Nurse said my Doctor’s Surgery should’ve arranged
for regular catheter changes via their service!!
I have considered going ‘private’ on this, for a HoLEP or TURP operation, but the problems (apart
from a cost of maybe £15,000+) is that they have to start the whole process of testing (camera, then
urodynamic study, etc) all over again, so it might not be any earlier than waiting on the NHS, and
would involve a lot more, always uncomfortable – if not painful, catheter changes!!
As ever, huge thanks to Doug for his insights and experience, and for setting up this thread, as well
as to any others my ramblings might assist. 🙂
So .. catheter number 5 in and draining well – hopefully gives me less worry, and I now know the
process for getting it changed via the District Nurse (or Hospital A&E, if need be). Hoping that the
operation date intervenes before it becomes necessary again – especially when I summarise things
and that the delays have meant two Hospital A&E visits, already!! I guess that once I’ve recovered
from the soreness, I can also see how this catheter / my bladder copes with some gentle running!? 🙂
Marty
It seems it’s incumbent upon us to be very proactive in getting through the medical care system. Communication breakdowns as you have described have resulted in a lot of unnecessary trauma. My experience has been much less challenging with my providers, but they too can be limited in their availability for help and knowledge. When I asked them about getting a flip-flow valve for daytime use, (after 3 months on bags) they refused to help me, possibly afraid that I would forget to regularly empty may bladder. But I got one anyway, and learned a lot about it from this forum, and it gave me such freedom. Most nurses and docs in my experience with catheters are not especially patient or sympathetic, but one nurse who did have these qualities helped me immensely.
My urologist at first visit gave me the saline solution and hypo and instructed me how to use it if an obstruction occurred. I’m not sure I could have done it, but maybe with my wife’s help….They kept tabs on how long the catheter was in for, and it was never over 2 months. By the way, there are curved-tipped intermittent catheters vs straight-tip, and I found that the FR 16 size curved-tip made by Coloplast works best for my situation and sensitivity. The straight-tip ones I initially sampled were painful and made me bleed. All the best to you, Marty.
Re: Exercising with a catheter
I had a temporary catheter fitted 2 weeks ago. I asked the doctor who saw me on the ward before I was discharged if it was ok to do run for short distances while wearing the catheter. He said it should be ok.
I have done two running/walking sessions, i.e. running for about 5 minutes, walking for about 2 minutes for a total of 30 minutes. On both occasions I have felt the need to urinate and have passed blood for a short period of time. Has anyone else experienced this? I have a Trial Without Catheter appointment – known as TWOC – on Thursday 26th August but thought I’d mention my experience.
I wanted to get back to running (as well as swimming and cycling) ASAP as I am competing in a triathlon on 19th September.
regards
Tony Dooley
Re: my previous post … I meant to add …
The catheter I have is the Flip Flo type catheter so I do not have a drainage bag attached during the day. It is kept in place with a Simpla Coloplast strapped around my thigh. I also wear underwear under my running shorts to try and keep the catheter tube from moving too much at the end of the urethra but it still feels uncomfortable.
Re: Exercising with a catheter.
I had a temporary catheter fitted 2 weeks ago. I asked the doctor who saw me on the ward before I was discharged if it was ok to do run for short distances while wearing the catheter. He said it should be ok.
I have done two running/walking sessions, i.e. running for about 5 minutes, walking for about 2 minutes for a total of 30 minutes. On both occasions I have felt the need to urinate and have passed blood for a short period of time. Has anyone else experienced this? I have a Trial Without Catheter appointment – known as TWOC – on Thursday 26th August but thought I’d mention my experience.
I wanted to get back to running (as well as swimming and cycling) ASAP as I am competing in a triathlon on 19th September.
regards
Tony Dooley
Hi Tony
Many thanks for finding my blog and for leaving your two comments!
Remember I’m not a Doctor or anything like that. Having said that, based on my own experience and that of others have said in the comments above, you shouldn’t be passing any blood. It could be that the tip of the catheter tube is rubbing on the bladder wall causing some irritation and a small wound which then bleeds a little. I think someone suggested found having a half full bladder would prevent the catheter from rubbing inside the bladder and this might help ease the problem.
Either way, my advice is to talk to your Doctor, your Urologist or the hospital, just to be on the safe side.
Good luck with the training!
Hi Tony,
I can’t say I’ve had exactly that experience, whilst I think I was still too uncomfortable in the first two weeks of having the catheter to do any running (so well done, you!), although I do sometimes feel quite an urge to urinate during the run – although I try *not* to run on an empty bladder. On those occasions (usually further into a longer run), I’ve noticed a small amount of blood a couple of times, but not much, but do sometimes get blood from the bladder after the run – but much more noticably if I had a fairly empty bladder before going out .. hence trying *not* to have an empty bladder before a run! My belief is that the catheter moves around in the bladder during running, causing some bleeding, but if I leave the bladder half full, this decreases the amount of movement / friction! The other thing worth mentioning is that I also have a flip-flo valve, but I leave it “loose” inside my underwear, rather than attached to my leg in any way, sort of curved around and upwards, as I find this *significantly* reduces the discomfort. The discomfort does reduce after a while, but I hope that you don’t get to that stage, and that you pass your TWOC. 🙂
In my own news, I will hit my one year anniversary (coincidentally on 26th August!) of having a catheter, and catheter number 5 is settling in moderately, but running with this one, even with a half full bladder, does still seem to result in a small amount of blood! As such, I’ve decided I needed to cut down my running, for now, although after 3.5 weeks of no runs, I could not resist going to parkrun last Saturday at Houghton Hall, and was surprised how well I did, although I had forgotten how hard it is! (NB: My ribs ached quite a bit, afterwards.)
Anyway, the other news is that I *finally* have a date for my TURP, after I chased again, and it is due on 17th September!! So, hopefully, the end is in sight, although I daresay there’s still a period of recovery and then going through a TWOC test, to see if I can finally say goodbye to the catheters!?
Hey Marty! You have a date, that’s brilliant news, so let’s hope nothing throws that off course.
We were both at the same Parkrun, what a coincidence. Just emailed you…..
Hello again,
I may not be back running, *yet*, but the great news is that I’ve had my TURP operation (last Friday), and I passed the T-WOC test on Monday, so I am back home *without* a catheter!! Maybe I’m not allowed to post on this thread any more!! 🙂 Won’t go into details for now (Doug maybe might suggest a better thread for that?), but it all went well – a very pleasant 2 days stay in a nice hospital ward, a pain-free operation, and back home with no tubes left in me – first time in 13 months!! Feeling a bit tired, and still a bit of recovering to do, but probably about the best result possible. They apparently removed around 40g of prostate, plus some bladder stones (apparently that’s normal after having a catheter in for an extended period), so it’s all systems go. Gentle path back to activity, but I feel pretty good so far, so maybe start some gentle running and other activities around early October.
Great to hear, happy for your outcome. You sure put in the work for it! All the best to you.
That’s great news Marty, brilliant to hear that. Mind you, I was kicked out of hospital within a couple of hours following my HoLEP operation, much too soon, so I’m glad you were able to recover properly.
So here’s my very best wishes as you recuperate and I’ll hopefully look forward to seeing you at a Parkrun some time!
All the best
Doug
PS I’ll include a suitable link for any of your follow up news, unless you’d like to do a guest post?
Cycling with a foley catheter. You need a Poisis Duette Foley catheter. A belly bag for the urine, a fanny pack to put it in. You wear the fanny pack in front. You do have to cit the fanny pack to put the tube in. I wear the foley connected directly to the belly bag. Nothing shows. You just have to play around with it.
I use anAdamo split saddle to tale pressure off the sensitive spots. I have done several rides over an hour with no issues.
Hi Doug,
I have a TURP procedure scheduled in 2 weeks. The Urologist says there’s a 50/50 chance it will help with my urinary retention as the bladder appears to have significant damage from years of retaining large volume. I am 60 and have been active all my life. I run, hike and exercise regularly. Needless to say, I am having a lot of anxiety over my upcoming procedure and the prospect of having to use a catheter the rest of my life if the procedure doesn’t help. I guess I don’t really have a question for you, just am very glad to find this forum exists and I’m sure I will be visiting it frequently. Thank you for putting this together.
Hello Roland
Many thanks for leaving your comment and for finding my blog.
First of all I wish you well with your operation, which has some similarities to the HoLEP operation I had myself, just over three years ago. Hopefully things will go to plan and your Christmas is fine.
Based on my own experience, if your bladder does not regain its original shape and strength, you may not be able to completely empty your bladder and some form of a catheter will be needed. It might depend on how much residual urine is left after having a normal pee. Intermittent catheters are no big deal. You might find you only need to visit the toilet 3x a day.
Hope all the pre-op goes well and the operation itself! Please keep in touch and I’ll look forward to hearing how you get on..
With best wishes
Doug
Thanks Doug,
I appreciate the well wishes and the insight on your own experience. I will be sure to check in after my procedure.
Hi Roland,
I had a TURP operation back in September, this year. This resulted after being diagnosed with ‘chronic’ urinary retention 13 months earlier, and so I lived with an indwelling catheter (well, six, counting all the changes when they did various tests or after one had been in for 7 months and ‘blocked up’)! I suspect the retention problem had been *gradually* developing over a few years!
I was told I had maybe an 80% chance of no longer needing a catheter, and that in my area, a TURP operation could be done, but not a HoLEP (which I’d read had fewer & shorter lasting side-effects).
In the event, the operation went very well ; an injection in the back (spine) to numb me waist down, so I was awake for the operation, and I genuinely felt virtually nothing for the 90 minute operation! Post op was slightly strange whilst the anaesthetic wore off – it took about 4 hours before my legs started to respond to my brain’s attempt to move them! I stayed in the hospital, with the large catheter they’d inserted at the end of the operation, plus a saline drip (to help drain blood & ‘bits’ from the operation), until the next morning, when they removed the saline drip. I stayed with the catheter in until the next morning, and it came out virtually painlessly – something I’d worried about! I was able able to “go” without a catheter, for the first time in almost 13 months!! Ok, it stung a bit from the operation site still healing, but (excusing the pun) was a great relief, and the flow was good!! I was provided with plenty of water and 4 specimen bottle to ‘fill’, which I duly did. Cutting a longer story shorter, they tested the results and it meant I passed my T-WOC (test without catheter), and they let me home that afternoon, with NO catheter. All been fine in that respect, since! The couple of other things that did come as a slight surprise (maybe not enough research) were firstly that as well as clearing some of the prostate, they found and cleared several bladder stones, which apparently is not uncommon in people who’ve had a catheter long-term, and secondly, there is a very common side effect of the operation known as retroactive ejaculation, which I do experience (look it up online) – which is not ideal, but I guess it’s better than having the catheter and/or having kidney issues?
Anyway, after the operation, I had a little bit of bleeding for maybe 4-5 days, but felt fine after a week, though did delay any strenuous activity for about 4 weeks, restarting some sport, and then restarting running after 6 weeks, with no issues. Three months down the line, I’m fine and active – walking and playing sport (though not run for a bit, as had a bad cold that won’t shift)!!
I hope things go well for you, and hope you’ll come back and keep us updated. 🙂
Marty
Hi Marty,
Thanks for sharing your experience and glad your outcome turned out fine. That’s encouraging for me although my chances appear to be basically a coin toss. I will keep my fingers crossed and return here with a hopefully positive update.
Hello Roland,
Have a neurogenic bladder and was on an indwelling catheter for 3-4 months last winter/spring. Urologist indicated a TURP would not help me, at 67 years age. Was terrified at the prospect of using disposable catheters since each time they had to test me or change bags it was incredibly painful. Finally a nurse was patient and empathetic and got me over the hump and I was able to start doing it myself. It can be done, as of now probably over 900 times of self-cathing and it’s not a huge or painful deal, 4-5 times per 24 hours. So if your outcome is similar, just an encouraging word that an active and satisfying life is still in the picture.
Hi Stu,
The Urologist mentioned the same thing to me. He said if I ended up having to self-cath, I would easily get used to it. He said the worst might be the occasional infection. Thanks for your encouraging words.
Had my TURP procedure done today. Doctor says it went well and I was sent home after about an hour of recovery at the Surgery Center. The catheter is quite uncomfortable but I am getting used to it. I had a bit of a scare when I was getting something to eat out of the pantry and the hose got caught in front of the cabinet door without me realizing it. I closed the cabinet door and it gave the catheter a good yank. All appears to be well though (I hope). This is probably one of the reasons a Hospital stay is sometimes recommended.
I go back next week for a voiding test and hopefully no longer need the catheter. Wish me luck…
Catheters are a strange appendage for the first few days, sleeping and cleaning can be sometimes bothersome, but at least you get to lie in bed all night! Glad the surgery went well, and yes, all the best to you for the voiding test. Let us know how you’re doing.
Hi Roland,
Glad to read your positive news and I do hope your TWOC is successful so you can put all of this behind you. Even if you need to self-cath afterwards, that’s no big deal.
Forgive me for using the jargon, TWOC, which is Trial Without Catheter. Mind you, I had come across that earlier in my career, when I worked in criminal justice. In that setting referred to Taking Without Consent. In other words it was about stealing someone’s car and that equalled 6 months imprisonment.
Anyway, I hope that you continue to recover from the operation. When I had my Holep operation 3 years ago, it took a few days for the anaesthetic to be completely cleared and of course I was a bit sore.
Here’s wishing you a nice Christmas and hope things settle down for you.
Before I forget, every day many people read this blog post, so any experiences you can post will be very helpful for other men, so please keep adding comments!
Best wishes,
Doug.
Thanks Doug. A Merry Christmas to you and all who are reading this post.
Ditto on the Merry Christmas, and Happy New Year to those perusing this blog!!
Roland – I also had a TURP operation (this September), but sounds like things were done slightly differently for you than in my case? I’d had a catheter in for almost 13 months pre-operation, so that aspect was fine for me, but firstly, the anaesthetic (in my spine) took maybe 3-4 hours before I could even stand, never mind be let home!! The operation itself took a little longer than expected (it took about 90 minutes), as they found a few bladder stones, which they also cleared – apparently a common side-effect of having an indwelling catheter for a long period. I stayed in for2 nights, and for the first night had a drip, to help flush out all the blood from the operation. The second morning they removed the catheter that had gone in at the end of the operation (thankfully virtually painlessly), and I started my voiding test (or T-WOC) in effect, so had to drink lots of fluid, and fill four large sample bottles! I achieved this without too much issue, so I went home withOUT a catheter (first time in 13 months)!! 🙂 Peeing stung a tiny bit for maybe a couple of days, and still a little blood coming through at the start of peeing for about 5-6 days, but ever since then, all has been fine. 🙂 Hope your voiding works, soon.
A quick thought about when you have a catheter, which for me *massively* improved being able to do things almost like normal, including running (up to Half Marathon), and that was replacing the bag with a *flip flow valve*. It may not be possible for all, as some people may need to have the bladder *continually* emptying, but in my case, the flip flow valve meant I didn’t need a bag, meant a *huge* reduction in discomfort, meant no catching the hose on anything (ouch!!), meant being able to do all the activities I wanted to, and, instead of emptying / cleaning a bag, meant I could just “go” whenever I wanted/needed to by just opening the valve (& remembering to close it again, afterwards).
Whatever happens in your instance, I hope it works out ok for you.
Marty
Searching the web & found your blog. Lots of great information. I’m 67 and 2 years ago had urinary retention due to BPH. Urologist did a uro-lift procedure which worked ok until now when I had retention again. Doc says adding more uro-lift will solve the problem. Next appointment in a couple weeks. Meantime I have a Foley catheter, am using thigh bag during day & night bag at night. I walk and work out every day with little discomfort unless I bend over too much. Went xc skiing with no problem, except a little blood due to all the back & forth leg motion. Plan to go downhill skiing next week which I’m hoping won’t be a problem since its (generally) a smoother activity. We’ll see. Good to read all the stories and know I’m not the only one with these issues.
Found your blog, when I was researching “exercising with a catheter”. In a nutshell….enlarged prostate, couldn’t pee, high PSA count (6.97) just to name a few of my issues. Had HoLep procedure, was peeing like a twelve year old again, at least for a week or two. Suddenly my flow started slowing down, soon almost down to a drip, penis would start ballooning when I tried to urinate, went to Uro, it was determined through testing that I had a stricture in my urethra, scaring caused by previous catheter usage that was blocking my urine flow. So another surgery to clear the stricture….catheter for a week afterwards, removed and could pee again, week later problem returned….surgery failed. It was determined that I would have to have uroplasty (reconstruction of my urethra, using skin grafts from the inside of my cheeks (gum). I now have a supra pubic catheter below my belly button. I will have this for the next three months while my urethra heals from the previous surgery, so they can successfully do the uroplasty. Actually the supra pubic catheter is less cumbersome than the urethra catheter, and far less painful. As usual hygiene is a plus, stay hydrated, keep the bladder flushed. Some exercise is possible. No problems as of yet, still early. Each person is different on their limitations. I use a leg bag during the day, not to cumbersome. My Uro told me that a lot of people who are told they have prostate issues actually have strictures that are the cause of their retention issues. A stricture in your urethra is like squeezing a water hose and interrupting the flow of the water coming out. Improper placing of a catheter, thus scraping the urethra, leaves a scar resulting in interrupting the flow of urine…spraying , split stream, dribbling are just a few signs of a urethral stricture. Oh well, that’s my story. Great blog…feels good to know, I’m not alone. Good luck to all.
Hello,
USA dweller here, 76 y/o but recently able to hike 20 miles with 1500m elevation gain in a day, going through what most have described here. I am so thankful for your efforts with this blog, feeling for the first time since diagnosis/catheter insertion that I am not alone with this affliction. My bladder has been stretched so badly and for so long that the urologist is certain I will need to self-catheterize after any surgery I might need.
Consistent with others’ experiences, my urologist has scant guidance for a physically active patient but eventually provided a simple plug, indicating that I could use it for an hour or two at a time while hiking. I am awaiting a urodynamics test next month. Any insights would be welcome regarding:
-The use of the flip valve. I was surprised the first time I removed the plug after exercise that outflow was minimal, a few drops, although I fill a half litre leg bag in a few hours. How is the use of the valve different from the plug? Are users able to drain from it while taking a break from the exercise and waiting some time for it to drain retained urine?
-How difficult is the urodynamics procedure? I know I’ll get through it but am a big baby with such things.
-I have an indwelling catheter (protocol here is for monthly changeouts) and its replacements have been unpleasant, to say the least. How long has it taken people to become comfortable with inserting the intermittent catheter? And is having to get up several times at night the norm?
Thanks again for your discussion and I wish all of you with this condition the very best. I practically needed smelling salts as I began reading the posts but knowing is better than having one’s head in the sand. I’ll happily share my ongoing experience to help others and hope this blog is still active Either way, thank you.
Rick
Good to find your blog, and the helpful comments in it.
UK based, age 65, catherised two weeks ago after total retention blockage. On the list for ‘urgent’ TURP was last I heard.
I was a five days a week gym goer – bikes, weights with long walks too.
I’m going back to gym for first session tomorrow with flow tap on catheter; I’m trying it out this evening instead of the bag.
Interesting to see that someone mentioned ‘no swimming’. Bear in mind that most well managed pools contain chlorinated water and should contain little or no bacteria, so that should be as good as dipping your pipe in Milton; I would not hesitate.
I guess one of the drawbacks of the bags is that your bladder and surrounding muscle gets lazy not having to squeeze and maybe the use of the tap can keep it ‘squeezing’.
Alan,
Your path sounds similar to mine, six months removed. I’ll share what I’ve learned and my outcome (so far):
If your doctor approves of it, the flip valve is the way to go. You’ll just need to be vigilant that you’re not retaining too much between drainings. In addition to encouraging the use of those muscles, its far less cumbersome when exercising (or, actually, anytime). Extended exercising with it will eventually result in chafing from movement of the catheter in the urethra but, in my case, it allowed me to double my hiking range (mountains of NH, USA). And, overall, it bestows a sense of normalcy vs. the plumbing lashed down your leg and the bag itself. I, too, was advised not to enter a pool but never asked why since it wasn’t an option anyway.
I was catheterized in early August, 2022, after a finding of complete obstruction (from BPH). I had almost two liters backed up and it took a while for my kidneys to recover. I lived with the catheter(s) for several months, exercising as frequently and strenuously as the catheter (eventually with flip valve) would allow while I was monitored and, after a urodynamics procedure, I was advised to have Green Light laser surgery (the laser equivalent of TURP) with the hope that I might require only 2x/day self-catheterization after recovery. The Green Light procedure was painless and I recovered in a couple of weeks. When the catheter was removed (by me, as directed), I had enough functionality to need no self-catheterization, retaining only 2ml. So far, so good. Everything works.
My takeaways:
-Push the urologists for solutions to discomfort/disfunction encountered while exercising. Using Surgilube is an example. At least here in the NE US, urology patients are apparently assumed to be sedentary. I was fortunate that the urologist who performed the urodynamics procedure (at a larger, highly respected hospital near Boston) was an athlete and he clarified my options and advised my local urologist accordingly.
-At the gym, ab work caused the most discomfort and I had to abandon it.
-It may not be an option for you but, if possible, get the Green Light or a similar laser procedure. My recovery time was a fraction of that needed by others I know who have had TURP surgery for BPH.
-While the longer term specter of months of an indwelling catheter, surgery and ultimately self-catheterization seemed bleak at the onset of all this, I found that I was ready for whatever it took once I get my head around it. I’m sure you will, too.
I wish you well!
Rick
First session back in the gym, two weeks after catheter fitted and after binning the ‘day bag’ in favour of a drain valve!
Some lighter than usual weights which were fine, and some Kettlebell deadlifts, also fine.
Such a fantastic, supportive gym I go to as well, so many folk came over to see how I was doing; the gym had shared my hospital trip on its social media.
As ever, part of the key is plenty of hydration and don’t be afraid to nip out to pull the plug mid session.
Overdid it on a long walk, bear in mind a catheter causes a bit of internal friction where there shouldn’t be!
So a little bit of blood, but ceased fairly fast.
Exercise is good, but don’t overdo it. I stick to my normal weights in the gym, and shorter walks outside.
So free after getting rid of those awful leg bags!
Hi Doug
I noted the guys were talking about bleeding after runs well I bleed after a cathata change from one of the local clinics my cath bag was starting to fill with blood not urine it was discovered when I went to the A and E a false entry way was created and the specialist urologist was called to fix me it was very eye watering needless to say I said just do what you can please and don’t take it personal if I swear he flushed me out several times as I had blood clotts that dried on my inside due to triage not booking me in a mistake of the nurse who gave me a urine bottle I said what’s this for I told him I got this fixed to me he must have been at the end of his 12 hr shift, the regstrar uroglist got my urine flowing again but I bleed for nine days I joking said to one nurse I know how woman feel on there periods
Ouch.
I certainly didn’t run, but I was doing big sets of kettlebell swings and lifting weights right up to the day before my re-bore!
Cross trainer in gym was ok, also avoided cycling, stationary or not.
Been a while since I posted on here, but wanted to wholeheartedly recommend going with the flip-flow valve (aka drain valve) on an indwelling catheter, and ditch the leg bags unless very, very strongly advised you *need* that option. Do drain the bladder frequently, as this can helps restore bladder function / elasticity quicker, and also reduces chances of UTIs, although getting UTIs does seem to be almost inevitable. Remember that indwelling caths need to be changed every 3-4 months or so. I learned the hard way, as was not told this & had a cath completely block on me after about 7 months, meaning I ended up having to go to emergency hospital treatment to remove it (and even that took several hours, as emergency dept. ended having to call in a urology guy, as the cath did not want to come out easily! The most painful 6-8 hours of my life, hopping from one foot to the other due to being unbearably full, yet no way to relieve myself. Strong aversion to indwelling cath for all those reasons, plus the discomfort, the invonvenience, the painful removals/insertions and UTIs.
Whilst I had the cath, I slowly returned to running, and although a little chafing/discomfort at first (much less w/o the leg bags), soon got back into the swing of it – though found it better not to *fully* empty the bladder before running, as it felt a bit weird/uncomfortable with a fully empty bladder!! Within a couple of months I was running almost regularly, and back to pre cath levels and times within 3 months, doing distances up to half marathon w/o any issues (except the blocked cat)!!
All that said, I eventually ditched the indwelling cath after 13 months when I had TURP operation. I would say I was almost fully recovered after just about 5 days (bleeding for only about 2 days), and returned to running again along similar lines to above.
Cue 2 years on, and unfortunately still retaining more than the urologist deems good (although no kidney issues or prostate issue detected to date) – for ongoing helath, they wanted to put me back on an indwelling cath, but I declined! However, I have decided to agree to go with the self-cath option. I’m just two weeks in, and so far it’s gone pretty well, and after the first few goes being pretty uncomfortable (though not really painful), it had become ok. Last couple of days, though, the self-cath does seem to want to go past the sphincter (even with coughing, etc), and it feels worrying to try to push quite so hard with the self-cath not going through. I persevered last time but one, and with a quite a bit of effort, the self-cath did finally seem to “pop” through. No blood or discomfort resulting, so I’m a tad unsure whether to keep pushing the self-cath or not? I think I’ll try once a day for a day or two, and if still an issue, get back to the hospital for advise!! It may resolve itself (fingers crossed). 🙂
All that said, assuming the latest issue is just temporary, my personal view is that the self-cath route is much preferable to the indwelling route, *especially* if you want to remain active, although still *very* doable with the flip-flow/drain valve on an indwelling cath. Just take it gently, and the initial discomfort does reduce, and there’s no real reason you cannot return to being active.
Marty
Marty, good to hear the progressions from a fellow cather who is trying to stay active. In my case, I was indwelling 24/7 for 3 months before I heard about the valve from this forum. My urologist never mentioned the option, and then when I told him I wanted to try it, he was not agreeable, but I did it (carefully) anyway, which helped me get stronger while getting the nerve to self-cath. Insertions while changing out the indwelling tube had been excrutiating, but I finally was able to tolerate intermittent catheters after being patiently helped by a nurse. My bladder is pretty blown out so I have to cath 4 times a day. Breathing and relaxing sphincters and the pelvic area helps a lot, and most times it’s not uncomfortable. The prostrate at the last 7-8″ of the tube going in is where it gets difficult, but breathing and relaxing helps alot. Of course sensitivity is much reduced also which is fine, but then it requires more stimulating for sex. I’m forever grateful for that nurse. Urologist said that TURP would not help me, but he did say that some bladder function might return. Very glad to be jogging, going to the gym, working, and traveling.
Also, it occurred to me that having a coudre-tip size 16FR (one of the thickest) that comes packaged hydrophyllic-already lubed- might be useful where the thinner and pointier tubes can be more painful. Might be good to try out a few types.
So does the flip flop valve connect to the main cathatar I must have been confused when I tried to work it out I thought it connected to the cathata bag. In saying that my cathta,does not seem to drain at night if very little is there anybody here have that problem since the bed is lower then the stand the night bag sits on drains during the day but that seems to be slowing down ok depends how much u drink water.coffee tea etc.
I hope your problems get better over for you must admit it’s like a rollacoaster not knowing what gonna happen next
Flip flow valve goes on instead of a leg bag – in fact, I just pulled the drain valve off the leg bags and used them.
I continued with the night bags as usual in bed.
Probably a good idea to have the night bag lower than the bed for good drainage.
Ah yes
Edit
Night bag on the floor frame, while I was in bed.
It’s good that you created this blogg site probably the next step would be a chat site. I certainly need more positive thought as it’s impacted me in a very negative light let’s face its not natural to have a cathata in side you I can understand doug went for intermittent cathta draining and the operation it’s self, I’m almost a nervous wreck apart from this problem I’m also illergic to a lot of modern day meds been older and a lot less able to cope eg I was given tomulosin I started breaking out in blisters pus like on the back of my arms and continual pins and needles I’m sorry it may not sound positive but there must be others that feel and think that way and exercise is also part of keeping healthy I agree I used to cycle and a few miles most days all that been put on the back burner.
May I also address the medical people equip you for any of this you have to ask for equipment you have to ask and most of them say ask. Your local gp surgery when you ask for supplies they say your not down for it then you show them your leg bag you still get turned away and have to make phone calls to try to get things moving then are little things like spare cathta straps also they don’t tell you how you can shower with a cathata bag one side covered in a cotton like fabric,I’m sorry it probably sounds like a rant it probably is but if it’s not said others are not going to get help, so if I’ve said anything to offend I apologise
Brian
I am so sorry to read about the problems you are having. I hope things improve soon.
Dealing with the NHS is so difficult these days. Getting GP appointments is so much more tricky these days. It’s also easy to get fobbed off by receptionists who are a mixed bunch, just like any other group of people.
The main thing in my view is be persistent, ultra polite. Be firm and determinedly persistent. Don’t be afraid of asking about the complaint process and using this if you’re being badly treated by anyone, they will be keen to resolve any complaints at the lowest level possible.
You can buy flip flow valves over the counter in pharmacies, although they will probably have to order it for you. I can’t suggest to go against your Doctor’s advice but having a good conversation about the pros and cons of different approaches might help. For myself when I had an indwelling catheter for 7 months I hated it. I talked to the pharmacist about it and they came up with the valve, which I went for and then told the hospital about afterwards. They were a bit ambivalent but didn’t object.
For myself, I always have to believe there is a solution and I will get through difficult times. It’s the way I’m wired, half full, not half empty. Did you see my other comment today? Have you considered going to a private hospital? You might get better treatment there.
Hi Brian, Sorry to hear you’ve had a rough experience to get you where you are with your Catheter. It could be that a valve might be a solution? If you’re with the UK NHS they don’t immediately offer that. You can order them yourself if NHS don’t offer it. The NHS system seems to be geared towards bedridden or wheelchair bound catheter users and don’t realise much that there are a lot of active 50+ guys. When I had the indwelling catheter I wore some tight fitting swimming trunks (with a valve not a bag) which held it all close to stop chaffing at the exit point.
Also, note there are many readers from US or other places which have health services that give different services, your comments about the health service refer to UK NHS I think.
I’m happy to give any other non expert advice!
Alan, Stu, Marty, Brian
My apologies for not responding earlier but it has been good to read through the flurry of comments over Christmas. I wish you all well and it seems, for most of us, the plumbing is working.
For myself things are okay. I still need to use self caths and will always need to do this. It doesn’t bother me too much, it has become part of normal life, a bit like having to wear my glasses to do anything on the computer.
Naturally UTIs are potentially never far away. Last winter it seemed I was going from one infection to another with plenty of antibiotics along the way. I knew that this was not a good situation to be in; we all know antibiotics are a wonderful thing but there is such a thing as having to many. I didn’t want to cause problems for the future.
My solution has been very simple. I make sure my bladder is reasonably full before having a pee. I empty myself normally, by having a pee before using the self cath. This means my clean, sterile urine rinses out my urethra as I suspected the cath was simply dragging an infection into my bladder. By pushing myself to do this, more of my bladder function has returned.
Overall it seems to have worked. The last time I had antibiotics was in early April, some eight months ago. I buy some of the urine dip sticks from Amazon so I can test my urine myself if I suspect an infection is brewing. Then, if there is a positive test, I drink loads of water over a 24 hour period and this seems to clear the infection.
Having been let down by my previous Doctor over all of this, combined with the current pressures of the NHS, I have taken a different approach these days:
1. Take more of an interest in my/your health, be more aware of what’s happening. Understand more of how your body works and how various medications work.
2. Be prepared to challenge, query or disagree with the approach taken by the Doctor. They now seem to respect me for this, they acknowledge they’re not always right and sure we can all make mistakes. Often there can be different options, all with their advantages and disadvantages – exploring these can be very positive.
3. Never ‘go it alone’ and always try to maintain a good rapport and relationship with your Doctor, nurse, hospital etc.
4. For us in the UK, be prepared to go down the private route. It is a different world. Not as expensive as we might sometimes expect and the attitude of the staff is very different. Aside from the prompt appointments offered and the generous time you have in each appointment, there is a sense of the patient being a customer who should be treated with the utmost care and respect. On and off, I have had a mixture of NHS and private healthcare for over twenty years. In all fairness most has been NHS but I look to the private hospital far more these days.
Hopefully this will bring regular commentators up to date. Brian, I will reply separately to you. My very best wishes to you all.