Good news. Hope the shoulders feel less sore today (take as many painkillers as you need, there are no prizes for being brave as they say). The one thing I wish I'd known is that the catheter really hurts if it's sitting too low on your leg (should have asked TechGuy for advice, clearly!) The thought of the bag pulling the tube downwards still makes my blood run cold. Use Instillagel or equivalent if you need it, as I surely did. On the bright side, having the catheter tube taken out was no more painful than walking across the room, and lasted nowhere near as long :-)
I think I was given 20 TENA pads and used them, then after that had one in the night for "just in case" briefly (gave it up when I had put the same dry one back in my shorts 3 nights running). You'll probably still discover things which make you leak a tiny bit six months or even a year later - leaning sideways to reach for the salt while sitting, or whatever.
Whatever you're offered to speed up erectile recovery, take it - a vacuum pump keeps the blood flowing and stretches it out to reduce "shortening" of the schlong, and you should get tablets to help gets things moving... There's a lot of good advice available here about all aspects of the recovery. Keep us posted when you get the good news about clear margins.
Sounds like you've got the right attitude to this, and I hope you'll be able to go from one day to the next without thinking about prostate cancer two or three years from now
Edited by member 04 Jul 2021 at 12:59
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RP 07.03.20, PSA 4.1, Gleason 3+4=7 |
User
Great to see you are making good progress. Won’t be long until the catheter is out! Makes you appreciate not having one full time as always amazed me how quick they fill up. I was almost tempted to plug is an expansion tank on my lower leg but was advised against this. The urology nurses earned their wages with an engineer suggesting things at the end of the phone :-)
I wasn’t one of the patients totally continent from day one after TWOC. Initially I was continent and tested it en route home as the toilet on the train was out of order 🥶 The minor leaks and dribbles stopped week 5. I still have the occasional drip if I have a full bladder and sneeze or lean over the kitchen sink without tensing my pelvic floor. But 99% of the time it’s perfect and no issues at the gym or walking etc i don’t really think about it at all as significantly exceeds expectations. Same with erectile function as assumed that would be ‘game over’ post op but very much in working order…. some of the time I need ~2.5mg tadalafil to give it a boost.
Please shout if you have an questions during your journey.
Edited by member 04 Jul 2021 at 14:12
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User
Thanks a lot everybody.
I must say part of me will miss the catheter! Its amazing how quickly you can get used to it and its wonderful being able to sleep all the way through the night instead of waking several times as was the case before. The urine is now clear having been rose for a few days. I do find after a long walk or climbing stairs it will go rose again for a while. Apparently this is normal
I am dreading the first few days after its taken out in case I am leaking constantly. Ive purchased all the gear and pads and nappies etc so will manage somehow. The day after Catheter removal Im Planning to travel back to South of France in a car taking 3 days to do it as the wife will drive. Is that very unwise or doable do you think. I just want to get home after a month in a hotel.
Surgeon did say he managed to do nerve sparing on both sides which was encouraging. regarding ED unless I am mistaken I did feel a morning glory the last 2 days. That surprised me a lot. It seems to have shrunk a lot though (and I could ill afford that anyway !) but the hardon must be a good sign I believe that the nerves have been preserved. Anyway time will tell.
Im thinking of getting a pump. Any recommendations gratefully received on models and methods of use!
thanks for all the support
User
Yes, rose is perfectly normal as the retaining balloon in the bladder moves around and irritates the bladder lining. Soon settles as you have seen.
two days after surgery I got a 90min train ride home. Was walking several Km’s per day and driving after 3 weeks. Only think you might want to consider is padding out rear of the car with some pillows and sleeping bag maybe so you can relax. I found sitting upright could get sore for a while (mainly home office execu chair) so a reclined position may be more comfortable on a long drive.
Have a good trip down and I bet you are looking forward to the utilising local analgesic* once again (*wine)
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Originally Posted by: Online Community MemberI must say part of me will miss the catheter! Its amazing how quickly you can get used to it and its wonderful being able to sleep all the way through the night instead of waking several times as was the case before
Yes I liked that, and going down the pub and drinking a few jars of ale and just checking the leg bag every so often then emptying it very quickly and easily before starting the next few jars of ale.
I did not have surgery so my catheter experience may not be comparable to yours. The day it comes out is called Trial Without Catheter (TWOC) if you can't pee they put another one in. It would not be beyond the realms of possibility that things would be fine for a day or two and then you could find yourself back in A and E to have another one fitted if things started going wrong (blood clot blocking urethra). I too would be keen to get home, as long as you have a healthcare system in place in France should you have problems, then go for it. If you could postpone your departure for a week it would probably be safer but it might just mean another week of sitting in a Hotel, so on balance I would take the risk.
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Jeremys
I have had around 12 trial without catheter and never failed, I always made sure I was well hydrated before getting to the hospital. Far better to leak after removal than not be able to pass urine and need a catheter refitting. At the hospital I was told to drink slow and steady and not to gulp the water down. If the weather is warm some extra fluid may help.
I was almost dry four days after catheter removal and from memory I would not have fancied a three day car journey. You sound like you have prepared for the journey. I did not get much notice from getting the urge signal to the flow starting. I soon got into the habit of squeezing those pelvic muscles and slowly standing up. Even if a pad can absorb say 150 ml it may not absorb that amount in one go. I got kitted up in the shower and tested how much the pad would absorb before running down my leg.
Trying to pee in a proper urine bottle whilst sitting in a car seat is not easy. Sitting in s wet pad is neither advisable or comfortable, perhaps some wipes for a quick freshen up may help and elasticated waist trousers are a must. Make sure you have some towels some for under you and some to cover your modesty when stuck on the motorway next to a coach full of people.
Due to work I frequently stopped in hotels a few weeks after my op. I would wear a pad in my underwear with some incontinence pants over them and sleep on a towel with a small water proof pad on the bed. At that point I was 99 percent dry.
Don't be surprised to see more blood and debris over the next few weeks.
Hope all goes well.
Thanks Chris
User
Bit of a drama this afternoon just as things seemed to be going so well.
Walking down Sloane Street I was horrified to find my catheter leaking at the point where it is held in place on the inner thigh. The rubber hose had split for some reason. Wet trousers, busy street, rather embarrassing to say the least.
After calling LBH in a panic I made my way to there to see the nurses who had never come across this problem before. It seemed they could not deflate the balloon as there was no suction because of the leak. Rather worrying time as they worked out what to do. My urologist told the lovely irish nurse on the phone that he thought the balloon was probably already deflated and go give it a tug and see if it came out. As you can imagine the idea of that made me very nervous ! In fact he was right and she managed to pull out the catheter a week before it was due to come out! …..and then replaced it with another one there and then despite my protestations that a general anaesthetic was surely required to do that. And then she sent me on my way.
I can feel the new catheters balloon internally and its quite painful when i walk. seems to be rubbing against something which causes pain. I was assured it was in the right place and properly inflated. Hopefully this will settle down and in the meantime Im staying in bed with painkillers!
not a great end to day 7!
hopefully tomorrow will be better
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Forgot to add and more importantly that the histology report was very good apparently. Still Gleason 3+4. Negative margins everywhere and no sign of the cancer having spread beyond the gland although the tumour did take up 30% of the prostate. I think ive been very lucky despite my difficult afternoon.
User
I'm glad histology is good. Catheters are general good but they do sometimes have problems. You don't want general anaesthetic just for a catheter change it might not be comfortable but it's not that bad.
I am surprised you say you can feel the balloon inside you, seems a bit odd. I could never feel mine.
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Wow that was a whirlwind event. That rubber tube is pretty sturdy so I guess one of those things. Hopefully you will have a easier time up until TWOC and things settle. The Irish nurse is very good. They all had the patience of saints when I was the patient 🤣
For your journey back a travel John from amazon might be a good idea. It’s a gel bag designed for getting caught short or camping. I buy a few of them. Didn’t use them in the end but useful back up. Came in very handy when camping as saved a freezing walk up to the loo block at 4am in 2C. Bit odd to use initially but pretty drip proof and the gel soaks everything up and sets very rapidly with no smell.
Edited by member 06 Jul 2021 at 22:01
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User
I could not feel the old balloon either. I think its the balloon Im feeling but cant be sure. Its just not comfortable walking around and a bit painful. Hope it's not an infection. How would I know if its an infection?
User
Great news on the histology. If it feels swollen of uncomfortable in the morning give the LBH urology nurse a quick call. I suspect they will call you anyway as I got a call Monday/Wed/Friday until removal.
it’s probably very sore. Keep taking the pain killers and see if things settle. So long as you can pee and the pain isn’t bad that’s a positive.
Edited by member 06 Jul 2021 at 21:58
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I met three different Irish doctors/nurses while I was in LBH and they were all absolutely lovely. All No nonsense but with great senses of humor and she certainly needed that with me today!
i will look up the Travel John and get some.. thanks for the advice.
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Jeremys
Catheters are normally quite robust, as a permanent Catheter user I belong to a catheter site ,not a common occurrence but as you found it happens. Have you got the fastening strap around the wider part of the catheter not the balloon port spout. Most internet images are not the best way of securing a catheter.
You may have had slightly less water in the previous balloon or more likely it is a slightly different position to the other one.
Good news on the histology, hope all goes well for the twoc and road trip.
Thanks Chris
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Thats interesting Chris about the less water or it being in a different position. It certainly feels different and much less comfortable. I just hope its not an infection.
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I did get an infection, but it wasn't painful. Despite the nurse's assurance if it's still painful today I would make a fuss.
I had a problem with a blockage and ended up in A&E. Lesson learned - if you feel wrong don't just grin and bear it.
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Thank you. Thats good advice. It still does not feel right
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New Catheter has settled down thankfully but cant wait to have it removed on Monday. I understand that I will have had the catheter in for slightly longer than normal as a bladder neck reconstruction was needed in my case. Whilst my urine is straw coloured I do still have some watery blood that squirts out the end of my penis when I do a poo or stand up from the loo. This worries me a bit but nurses say its not unusual. I suppose this must mean the bladder neck reconstruction is not yet fully healed so perhaps they will decide to keep the catheter in for longer of it still has not healed by monday.
I've been feeling quite tired following the catheter change over which definitely knocked me a bit. Also if Im not mistaken I've had one or two hot flushes that did not last long but which I had never experienced before and was not expecting.
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Yeah had similar for 14days after bladder neck reconstruction. Think it’s cautious approach when margins wider. Ninja surgeons are key for this.
I had intermittent blood in urine until removal. Nothing to worry about unless you have significant pain.
mainly it’s the balloon moving around in the bladder. The bladder material is sponge like and doesn’t like anything inside. Just normal inflammation that with settle within hours after removal.
you’ve had major surgery although it doesn’t feel like it. So will feel tired and all over the shop for a few weeks. Quite a astounding when you think about it as when I had tonsils removed I was in hospital for a week. When mates popes over day 5 after surgery they were amazed I was standing and looked normal…..think they expected me to open the door in a wheelchair and speech synthesiser 🤷🏼♂️😵💫🤔😄
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Jeremys
I do dislike the use of Normal and not unusual. I did bypass frequently when passing a motion, this is where blood and urine come out the end of the penis, it can be quite uncomfortable.
I was told that if urine leaks through the new joint into the abdominal cavity you would know about and be quite ill, I think we have had a couple of guys who had leaking joints.
As always if in doubt get medical advice. Nurses and doctors can sometimes be quite dismissive of symptoms and don't always recognise the unusual.
Has the extended catheter changed your road trip plans ?
Thanks Chris