I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

My story...

User
Posted 01 Apr 2018 at 19:11

Tips and advice for men who are due for the

Robotic Prostate Removal Operation.

Written by David Morris, a fit 71-year-old, in good health.

Operation: Date 2md January 2018

The following is my past experience and suggested practical preparation for the aftermath of surgery.

This is not a set of rules, but merely guidance for you, as we are all different, but I do hope you may find my experience useful in your preparation for surgery and your convalescence afterwards.

So! You are booked in and the countdown has begun and you may or may not have had major surgery before and do not know what to expect. Trust me, it is not all that bad, and may prolong or even save your life.

I will not go into the psychological side of things, as we are not all the same and we may react if different ways, but these few practical tips may just help your physical comfort, in the days which follow and even relieve certain anxieties, especially if you read of someone else who has experienced these issues and realise they are not unknown or abnormal.

“If you fail to plan, you plan to fail.” I’m sure you have heard that a million times, so let’s do some planning: -

Prior to the Operation: -

Exercises

Go on line, and/or ask your surgeon about Kegel exercises. These strengthen the pelvic floor muscles in preparation for the op and will need to be done afterwards the op, to help you regain continence, but do stick to the hospital guidance regarding exercise. I personally did press ups and sit ups every day, as well as Kegel exercises, for two months prior to my op.

Purchases:

Buy 1 or 2 sets of pyjamas, (if you wear them) as these are a very comfortable mode of dress for after the op, as you will be housebound for a few days. I bought mine made of stretch material which is most comfortable. They are also now known and “Lounge Wear” in M & S. Choose a bigger trouser size than usual, as you will need plenty of space and preferably ones with elasticated waist AND draw string waist ties. On my first try on, of my new pyjamas after the op, there was no way I could tolerate the elasticated waist, (even though they were big), so I just cut vertically down the front about 4” with scissors and then held them up at a reasonable tummy pressure with the draw strings.

A dressing gown is an essential garment, as this can be worn in bed, or if you get too hot, just drape it around the shoulders when you sit up in bed, as you may be cold, until you get the bedroom temperature to your liking. It is also useful to wear while sitting in a chair at your PC, or watching TV.

New personal wash cloths are good to have in stock, as these can be used once, then laundered in rotation, after every shower/bath/bidet washing/cleaning, of your person.

  1. Make sure you have lots of clean towels.

Pain killers are essential, but chemist/pharmacies will not sell them in a large quantity, so you will have to buy them over a period of time and/or from different stores to build up a stock, as you may not be able to go to the shops, as you will not be able to drive. I bought both Paracetamol and Ibuprofen. Take either as the instructions direct and make a note of the time. Take the same type of tablet/pain killer every 4 hours. I was told by the District Nurse, that I could alternate Paracetamol and Ibuprofen every 2 hours and this is safe. If you wake in the night, check the time you took the last ones, before you take any more. Keeping the pain away is vital for recovery and wellbeing.

It is counterproductive to take pain killers as you feel the pain, they need to be a regular regime, not a cure as it happens. If you cannot remember the last time you took your tablets, write the time on your hand as you take then, then look at this, before you take any more. You can then calculate the four hours, in your head, by looking at the time, written on your hand, note paper.

Bottled water is also essential and I preferred the 50cl (small) bottles, but these must be still, not sparkling water, (as the hospital will advise). Get enough in stock to last at least last two weeks, averaging 3-4 bottles a day, as they are heavy in a batch, which you should not lift after the op, so plan ahead.

Slippers are also a “must” so they can be worn without having to bend down to fasten them and you will need these for the hospital. Sheepskin ones are great for comfort and warmth.

An additional blanket for the bed is useful and I invested in a small electrical warm pad for my feet also. For some reason my feet were very cold in the day and in the night, which prevented me getting off the sleep, so warm feet are good for sleeping.

Pillows x 3 or even 4 and a big “V” shaped one is a bonus, to prop yourself up in bed to read, or watch TV.

You will be given some “Man Pads” from the hospital, but I found an alternative in very large, finely elasticated incontinence pants: a big bonus, as they are so comfy and add extra padding for the bum and scrotal area. So, buy enough of these for at least two weeks, using one/two per day/night.

New clean bucket.

To hold your night urine incontinence bag and other disposables.

n.b. A night bag holder is available FOC, on the NHS, but I found a plastic bucket more stable to hold my night catheter bag and useful to carry other used items to the wheelie bin.

Waterproof sheet for the bedroom floor. I found that a pic-nic blanket (Similar to the free one with National Trust membership) was suitable. I put the waterproof side up and the blanket side down on the bedroom carpet by my bed. However careful you think you are, or may be, there will be a leak at some time, when changing clothes and this carpet cover, will be wipeable and hygienic.

Waterproof under sheet for the mattress. The new ones on the market now are fantastic, no noise or crinkling effect and will save the mattress in case of leakage.

Prior to the operation

A day or so before, have a haircut, a manicure and a pedicure. Short hair and especially short nails promote good hygiene.

It is your choice to shave the pubic hair in the abdomen region, or not, but this will give the surgeon a clear work area.

A new nail brush and anti-bacterial hand wash is essential to have ready for your return home.

Food

Ensure you have a good stock of food available for your convalescence. Make batches for the freezer for your convenience after wards. Bolognaise sauce, meat and fish pies.

Eat regularly, three healthy meals or more a day, as this will help your recovery. Sensible eating and certain suitable recovery foods can be found on line.

I stayed off all fizzy drinks and alcohol entirely with no exceptions, for eight weeks. I drank decaffeinated tea with honey to sweeten it and still mineral water of course.

On the day of the OP

Follow the doctor’s instruction regarding food intake, I did not eat or drink after 12.00 midnight the night before, or whatever they request. Allow plenty of time to get to the hospital and take some loose change for the car park, if you are going by car.

Personal Effects.

There really is no need to take a lot of items to the hospital,

i.e. changes of clothes, shoes, dressing gowns, tissues, soap, etc. I do believe that the NHS is very good and they provide just about everything. A man could just walk in off the street and have the operation, without taking anything at all. More to the point, you will not be allowed to carry a big heavy bag after the operation anyway. The hospital is warm, the beds and pillows are very comfortable and you will be in just a surgical gown in bed anyway, but one pair of pyjamas and a pair of slippers will be good to have, in case you are in for more than one night. I arrived in a track suit and trainers and wore these to go home in afterwards. No one is “Dressed up for the Hunt Ball in hospital!

Physical issues.

After the op you will be fitted with a catheter in the theatre, under the aesthetic. This is inserted through your penis/urethra into your bladder. It is held in place by the design of the item, being double walled and inflated like a balloon at the end within the bladder. This is done with saline to prevent it from coming out. The tube continues from the bladder, outside the body towards the thigh and it joins another tube which leads to the leg bag. This is secured with two soft Velcro straps below the knee and is quite comfortable, as the reverse side is of it, is a soft felt type material. Ask for a thigh strap if one has not been fitted in theatre, as this holds the catheter to the top of the thigh, via a loop of soft rubber on Velcro. This makes the whole wearing of the item so much more comfortable, as the weight of the tube/bag/urine is not then on the penis. The tap at the bottom by your ankle, is well designed and most substantial and there is a short clear tube finisher at the end, by your ankle.

This is so handy to empty the bag in the toilet. Place your foot on the rim of the open toilet. Open the tap away from your foot/slipper and wipe the drips with toilet paper.

Do ensure that the tap does not trap the bottom of your pyjama leg or sock when you close it, as this will partially open the valve and it will leak. Likewise, be careful not to cross your legs in bed, (as this is bad for your circulation and if you catch the tap accidentally, it can open and leak). Nothing worse than a wet sock or slipper that smells of urine!

At night you will lose more urine than the leg bag will hold, so you will be provided with night bags with a 2lt capacity. Fitting these is easy, as explained in detail, when they are handed to you at the hospital.

So: -

To fit one: - Drain the leg bag and leave it on the leg. Take a night bag and remove the throw away plastic end protector

(which is at the other end to the tap of the night bag). This will reveal a tapered end fitting. Fit this into the small transparent tube on the leg bag tap. Open the leg bag tap. Urine will then flow into the night bag. I found it preferable to get into bed, holding the night bag, then lower it into the bucket at the side of the bed. In the morning, turn the tap off, then detach the night bag by holding the tap and pulling the night bag connector away. This is not an easy detachment, so twisting may be necessary. Take the night bag to the toilet and operate the tap at the bottom and drain into the toilet. The night bag is one use only, so then discard it, in an environmentally friendly way.

As a point of hygiene, I took my leg bag off each morning to shower. It is important to wash your hands before and after every procedure to prevent infection.

It is recommended that the leg bag is changed after 5 days, so to do this: Grasp the top of the leg bag tube (transparent) and pull & twist the actual catheter tube (which is a tan colour), gently off the leg bag tube and replace it with a new one.

Scars:

Your 6 port hole entry points in your abdomen will have adhesive covers one on each and these will be changed as necessary by the district nurse, who will visit you 5-7 days after the operation.

Expect:

Swelling of the abdomen, scrotum and penis, however the penis head retracts into the shaft somehow and is reduced to quarter of its normal length. The catheter seems to disappear into the overall swelling and the foreskin swells and may protrude too. The constant chaffing of the catheter at the end of the penis does make it sore, especially if a thigh band has not been fitted, as the leg bag gets full, so the weight is taken on the catheter. I used Savlon between the catheter and the foreskin to try to lubricate and prevent soreness.

After a shower, I used Vaseline between the scrotum and the top of the thighs, as I found talcum powder useless to prevent chaffing. I washed and changed it all every day. There will probably be leakage or seepage of blood mixed with another bodily fluids, between the catheter and the urethra at the end of the penis, this is why I wore and recommend incontinence pants from day one, for at least a week after the op.

The muscle section of my lower abdomen, over the pubic bone swelled and protruded to meet the swollen scrotum and this proved uncomfortable, but is not painful, as the Paracetamol and the Ibuprofen were working all the time, to keep pain at bay. Apparently, this does not come to everyone, but it did in my case.

I found that the swelling became more prolific as the day went on and especially in the evening, but I did not want to lay down all day, but keep to active, so as to help progress recovery, it is a bit of a balancing act.

Depression?

On the third/forth day I hit the “Brick Wall” emotionally and felt truly sorry for myself. I now understand that this could be a symptom of the aesthetic. To inspire my resolve, I just thought of the young soldiers returning from Afghanistan, wounded, limbs missing and shell shocked and my personal sorrows and circumstances seemed so insignificant, in comparison.

On the fifth day in, I was used to all the various emotions, and I bucked up and maintained my usual high spirits and kept busy.

Sleeping

I did have had the occasional 2-hour sleep in the day, but I tried to keep awake, as insomnia is awful. However, with a large swollen appendage between my legs, this prevented the usual “Turning Over” in bed, so sleeping on my back was the obvious position. Sleep did not come easy and I must admit I did take a few sleeping tablets occasionally.

Catheter Removal.

On the 14th day after the op, I returned to hospital and the catheter was expertly removed by a qualified nurse. There was no pain or soreness at all. After this and still on the ward, I was asked to wait for the next procedure, which was to prove urine being void of the bladder. This is a simple but an effective exercise. I was provided with a jug of still water and asked to drink a cup full every hour for three hours. When the feeling to urinate came, I went to the toilet and peed in a measuring jug and listed the amount on a record sheet, provided by the nurse. After the three sessions, I returned my record sheet to the nurse, who then tested my bladder with an ultrasound scanner to prove if the bladder was empty. Fortunately it was, so I received my departure letter and went home.

After the Removal of the Catheter.

There was a huge sense of relief when I was no longer attached to the catheter and that first warm shower afterwards, was just wonderful. I still used the Vaseline and the Savlon and the

following day, my scrotum and lower abdomen swelling had halved.

During the evening while sitting watching TV, I started the Kegel pelvic floor excesses and was able to go to the toilet and was able to “switch on” a stream of urine, on command, but there was a small leakage just prior, so I was pleased I was wearing incontinence pants, which I did throughout the night.

Not knowing if I may leak in my sleep, I placed a thick towel to sleep on in my bed and drifted off without sleeping any sleeping tablets. I woke 5 times for the toilet, clenching my pelvic muscles on the way to the loo and I had only leaked a little, but I could turn the stream on when sitting on the loo. It is advisable to sit on the loo, as the jet can point in any direction.

Loo paper, Savlon application, hand wash, then back to bed.

After 4-5 weeks from the operation, my continence become more manageable, but I made a point of going to the loo, after a period of a couple of hours, even if I did not have the urge.

I stood up from my chair, holding the Kegel exercise, so as to shut off and control the urge of the flow. I could not always get to the loo without a slight leakage, but this improved as time went on. When sitting on the loo, I tried to “hold” it for a second or two, as a way of gaining control, then just “let go” and the stream began. It is advised NOT to stop the flow in mid-stream, as stated in the hospital literature, as this could have an adverse effect on recovery.

When sneezing, coughing, laughing or just mentally relaxing, during say, a conversation, a short leak happened to me and this is usually felt with a short warm squirt of urine into the “Man Pad” I was able to control the major flow, when this had

happened and I braced myself in a Kegel exercise and walked to the loo.

I did without the pain killers after the first two weeks, as I became pain free, but certain discomfort continued.

After 5 weeks, I found myself saying “Brace” in my mind, as I stood up from a chair, as this is when my leaks used to be most active. I would adopt a Kegel brace to stop any urine flow and go to the loo, still holding this position, as I sat down to pee and releasing only when I “Gave the mental command” this being good training for a return to full continence.

After 6-7 weeks in from the op, I began to feel that my continence was not really progressing towards its former strength, so I took the Kegel exercises more seriously and I now do them at lease twice a day, laying on the floor with my knees bent. I do ten reputations of 5 second “Holds” and then ten quick, one second bursts and my ability to have longer time between pees is getting better, but the quantity, is still very small. There is a dull ache afterward the exercises, but I think this is proving that the muscles are responding.

It has now been 8 weeks since my op and my continence has improved to the point, that I now wear the very small black pads, with only the occasional “squirt” which is no more that a teaspoon full. This usually happens when I need the loo, or as my surgeon warned me, “Expect a leak when you get into a sports car”! Were his words. So stooping, or abdomen squeezing movements, or the sound of running water, may make you leak.

I just hope this resume’ of my own experience helps others to understand as to what they may expect and not to worry, but, as stated originally. “We are not all the same and we recover in different ways!” Do trust your surgeon, your doctor, your nurses and indeed all the NHS hospital staff. Put your life in their hands with confidence, as they do know what they are doing.

What they say and recommend, is in your best interests.

User
Posted 02 Apr 2018 at 00:27

This is a brilliant report - just worth noting that in most areas, there is no district nurse visting to change the dressings :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Apr 2018 at 13:16

Hello David
I'm glad to see things are starting to get back to normal. I had radical prostatectomy and had to wear a catheter from October to the following April It will take a while for your pelvic floor and bladder to get back to normal, after I had my catheter removed it took four or five months. I still wore pads for a short time but that for for my peace of mind. I wish I could say everything was fine now. But that is another story. Jerry Parker.

User
Posted 02 Apr 2018 at 17:14

Thank you David

User
Posted 02 Apr 2018 at 17:25

Thank you so much for taking the time to write this detailed post. We are expecting my husband to have this operation in a few weeks, and your post is so helpful to us.

Edited by member 02 Apr 2018 at 17:25  | Reason: Not specified

User
Posted 02 Apr 2018 at 21:21

A great report and will be very helpful for anyone preparing for 'the op'. My husband had his radical prostectomy on 26th January and I would say that his experience is very similar to yours. A couple of things I would add.

I think my husband would say that the catheter was the absolute worst part of the whole process and the relief when it was removed was immense. He suffered with a very sore penis and we bought some Instillagel from the pharmacy on the recommendation of other people on this forum. I wish we had bought a supply before the op instead we had to wait whilst it was ordered in. It provided instant relief, so I would add that to the shopping list.

Once the catheter was removed, initially my husband had absolutely no control, which was a huge blow and knocked his confidence. We had a system whereby we drew up a chart listing fluid intake, trips to the loo, volume passed and the weight of used pads. We kept this over a 4 week period and psychologically it was really helpful as we could see gradual improvement. We were told to expect a big change at 3 weeks and a further change at 3 months. 9 weeks after the operation he his pad free (just one of he small liners when we go out for the day/evening) and when we have little set backs the written record reminds us how far we have come.

Hope this helps as an addition to your excellent report.

User
Posted 03 Apr 2018 at 08:28
I had my catheter in for only 5 days, (thankfully as I hated it) when it was removed I had no control but did the kegels once daily and after 6-7 weeks full continence had returned

I’m still not sure if it was the kegels or my body “adjusting” to the new physiology. I noticed myself beginning to “automatically” clench when there was any sensation of drip or leak

Things just seemed to re-route

User
Posted 03 Apr 2018 at 12:52

I see there is a lot mentioned about catheters. I had a lot of trouble with mine. I was unable to sit for long on any chair hard or soft. As I said earlier I had my catheter for a few months, refitted 3 times due to it blocking. In April 2015 I was glad to see the back of those catheters as I thought!! I didn't realise I had an infection. Now and then I had blood showing in my urine. Went along to see my doctor who gave some antibiotics. Ok seem to clear up for a few months. In June of 2015 I had radiotherapy for 7 weeks, every day except weekends. Things seemed fine for a while. But I was having a problem with work. I was signed off during the therapy. But I still had a manager that kept ringing me and asking me to return to work. After the seven weeks were up I thought ok I will go back to work. But no I had to see there occupational health department. Being told by some school boy who had several St John Ambulance badges. He told me to come back to work for 3 days a week. That sound ok. But in the job I was doing it had a lot of stress involved. I won't say exactly what my job was, but a lot of people complain about the constant engineering work and the replacement bus services. Part of my job was arranging emergency road transport.
I went back to work for that week, luckily I didn't have much to do as I was lock out of my computers as I had been away from work from June 2014. By July 2015 things just got too much at work. What with the manager breathing down my neck all the time .Kept insisting on seeing me about a thing called management for attendance. The look on his face when I took the forms as he thought to sign them and I ripped them up and said I am retiring now. By this time I had started to get pains in my kidneys and groin area. Yes blood was back. So went off to A & E, waited for a while to be seen and was in a lot of pain by now. Saw a doctor who gave me pain killers a left me a while longer. Yeah 4pm until 2am. By the way no urine sample had been take. Ended up on a ward until lunch time the next day. Give more pain killers and sent home. This went on for over a year until January 2017. Several visits to the doctors and A&E, To my surprise one of the doctors said this maybe caused by the radiotherapy. Maybe at first but not nearly a year later. Anyway January 2017 a consultant came to see me and explained that I had a kidney infection. At last someone who is willing to do something. He tells me I may have been infected when I had the first catheter fitted and that maybe what caused the blocking. I was told that a stent was going to be fitted. So on Wednesday I was wheeled in to theatre. The next I knew it was Friday night. I woke up and felt a little uncomfortable in the groin area. There it was another catheter, but this time was different it also had a long yellow tube attached (turned out to be the stent) God was that painful, ok they kept putting antiseptic cream on the end of my penis with a local anesthetic, which seemed to burn more than help. I had to have another op about a week later to have the first stent removed and a new one put inside my left kidney through to my bladder and yet another catheter fitted. moved to a new ward still intensive care. another week in there. Ok doctors and nurses very friendly. Then the nurses with the red epaulettes came round. The doctors called the vampires I can see why the amount of blood they took several times a day. After another week moved to a new ward. Had a new problem this catheter and the next one seem to leak a lot. So went from pads to pants still needed changing 3 or 4 times a day. Two weeks there then went home. Normally would have been on my own as my wife had died. But my son had come home for a while from Spain and worked in Gibraltar. He was around for about 8 weeks. In April had to go for a trial without catheter. luckily was wearing incontinence pants, the drinking several 150 ml cups of water over three hours and the trips to the loo. Alas never made it, so new catheter fitted, more discomfort as unable to sit down. Told them and they just said that will pass (never did). Along came June and another trial without catheter. This time still leak a bit when stood up but made it to the loo and showed a bit in the jug. Told me after two hours I could go (no catheter ). I had heard about a gagic called kegels for men. Tried the exercises. But due to a serious back injury a few years ago. exercise of any kind is painful. Because of it was only allowed to use the pool at the local gym not allowed to use anything else. Brought a Kegel8 for men. It comes with four electric pads and an anal probe. Followed the instructions on how to use pads and used them for six weeks things seemed to improve until I went to my friends daughters wedding. Problem straight away stuck on a table no where near a door and quite away from the nearest loo. then the toasts started. those fateful words please be up standing not once but 3 or 4 times. Luckily I was staying at the hotel, admittedly on second floor. Had to make my excuses. My friend knew what had happened. By the time I had got showered and changed all the tables had been packed away and there now was a dance floor (no Chance). It is now April and I am still having problems. I can now make it to the loo but still have to wear incontinence pants. which I can't get from the NHS. Hope no one else has the same problems as I did. Jerry

User
Posted 03 Apr 2018 at 14:25

Thank you, David, for your thoroughly comprehensive report in all its gory detail.

I wonder if you were once a Boy Scout (be prepared!), or maybe in charge of logistics for recapturing the Falklands or some such other mammoth enterprise. There are certainly many useful tips there which I will take note of before I get get sexually abused by a robot.

Her Loveliness is similarly organised when we go on a cruise, with page after page of packing check-lists of “essentials”. I think the record is seven large suitcases for a two-week cruise out of Southampton!

I can manage two weeks round the Far East with only a carry-on bag. Might have to have a large suitcase full of Tena pads and fresh knickers next time - who knows? 😆😆😆

Good luck with your continuing recovery.

Edited by member 03 Apr 2018 at 14:28  | Reason: Not specified

 
Forum Jump  
©2024 Prostate Cancer UK