Normal stuff after surgery?

User

Posted 27 Mar 2019 at 10:00

Hello all,

On the 21st I was in Guys Hospital having RARP with nerve sparing etc and frozen sampling (apparently provides a better clue on clear margins.

The operation itself was 'technically difficult' according to the Prof, as there was some scarring from the 40-odd needle biopsy I had had 6 weeks previously.

I had a spinal injection to deaden the lower half of my body (good for pain relief I was told) and then wheeled in. The spinal injection was, I have to say, more uncomfortable than I expected!

Out of theatre and awake I felt ok of course as there was a drip, pain meds and effect of the spinal all going on. By day two I was out of bed and had a shower, by day 3 walking around the corridors and ready to come home.

Once home (and as of today) I am feeling not so great. I am extremely tired all the time, have massive bruising around the operation sites (mostly on my right side), not enjoying the suprapubic catheter and just feeling generally yuck. I had a bad headache most of Tuesday so the Prof suggested I stop self-injecting the Clexane and just keep mobile and keep the stockings on. Tomorrow I will be clamping the catheter before hopeful removal Friday.

My question is that most people seem to have really good experiences with RARP whereas I am feeling very tired and worn out, not sure how far I should be walking (On Monday I did two miles - apparently too much) anxious about blood clots (as not injecting the Clexane) and, I think, as it was private - generally not supported well post surgery (they kind of turf you out). Maybe I am being dramatic and need to understand it was major surgery but I am not joking when I say I feel worse than I did two days ago and the pain is tolerable but still quite intense in the abdomen (no chance of putting socks on or shoes myself!).

Anyone else out there had a similar experience or can relate to what I have written? Don't get me wrong, I understand there has to be pain before gain, but maybe my anxiety is being fed by feeling so rough!

Any advice really appreciated and I hope you are keeping well!

Mark

User

Posted 27 Mar 2019 at 11:19

I had a s*** time post op nearly dead with organ failure etc etc due to sepsis. I was in hospital for 3 weeks.
2 miles is way to far to be walking at this stage.
If the pain persists or you start to feel unwell CALL THE DOCTOR.

Forgot to say I had been home for a few days and was doing a lot of walking - take it easy!!

Edited by member 27 Mar 2019 at 11:21 | Reason: Not specified

User

Posted 27 Mar 2019 at 13:13

Jeez, Sepsis? that must have been extremely frightening. did they tell you where it originated from?

User

Posted 27 Mar 2019 at 15:23

After abdominal surgery, they say your body uses 5000 calories a day just healing, and you won't be consuming anywhere near that so you are bound to be fatigued and out of sorts.

Definitely overdid the walking ... 2 miles!

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

User

Posted 27 Mar 2019 at 15:56

Thanks Lyn, I guess it doesn't seem far but clearly is if I am burning that amount of calories too!

The physio's in the hospital put the fear of god into me about 'mobilisation' and walking as much as possible. I can walk easily but they should provide a better guide. Seems to vary between 'don't do 20 miles' and 'potter about the house and garden'...

Anyone devised a successful graduated exercise plan??

User

Posted 27 Mar 2019 at 19:38

I pottered about the garden as instructed, unfortunately we have 113 acres so the mile down to my neighbor s was to far.

The surgeon believes the sepsis originated from a leaking urethral join but I remember him clearly saying that 1% will get it for no particular reason than bad luck. Interestingly the strain I had was antibiotic resistant so probably came from the hospital somewhere.

User

Posted 27 Mar 2019 at 20:23

Sounds a total nightmare! my brother in law had a heel operation and nearly ended up with an amputation due to something he got from the hospital! its a risky business for sure. the headaches are what bother me but maybe i just need to zone out a bit more and not be Mr Active!

User

Posted 27 Mar 2019 at 23:11

I was wondering why you had a headache. Are you taking enough liquids. A good flush of warm water might be useful.

User

Posted 28 Mar 2019 at 07:58

Rapidly realising that too much walking is not good but I still maintain that there is no decent guide. I have been told "walk as much as you can tolerate", well at 51 I can walk miles before I feel tired but clearly 'miles' is not the right answer. If they said "200 metres day 3, 300 metres day 4, 500 metres day 5 etc.

That is the bit I am not happy with - the physio in the hospital made it sound almost like a marathon contest - walk, walk, walk was all I heard...

Yesterday I did less than a mile and had a bag full of blood when I got back - called the nurse "oh, that can be normal", so again I have no idea if I have 'overdone it'...

I would say private versus NHS aftercare are poles apart. NHS will provide a district nurse etc whereas private you have to make the calls and usually not locally...feels quite isolating!

User

Posted 28 Mar 2019 at 07:59

I think more down to stress and feeling tethered, perhaps the injections not helping as I have been better since I stopped those! Perhaps a bit of warmth around my neck could help!

User

Posted 28 Mar 2019 at 08:45

Everyone is different but John was slightly younger than you and just as fit if not more so; 10 days post op (the day he had his catheter out) he was walking down to the bottom of our street and back. Granted, he had open surgery so bigger external wounds but the internal damage isn't massively different between the operations.

Many don't realise that opting for private RP means very little aftercare and, in some areas, difficulty getting referred back into NHS services if needed. However, it isn't true that men having RP on the NHS get support from district nurses - like everything else, it varies dramatically from region to region.

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

User

Posted 28 Mar 2019 at 08:49

Thanks Lyn, yes I think I was maybe generalising about the NHS...ok to the bottom of my street and back will be the goal today, mainly because today is 'clamping off' day and I don't want to be too far from my house as I have no idea what will happen!!

Cheers,

Mark

User

Posted 28 Mar 2019 at 09:09

Good morning

After you had a major operation you walked miles ....I'm not in the good situation to judge you but it was / is radical to me.on other hands...that mean you are not getting pains as much as I did.OK that's fine it's your body if your happy to walk miles than it's up to you.

But I thought resting is the best way to heal your body ....and when you walk your catheter doesn't irritate your certain organs?

That's why the blood appears in catheter.

I watched the RP surgery operation on you tube than I realised why I'm still in pains 3 months after I had the surgery!

Still inside of my tummy stitches healing.

As Lynn says everybody is different I think your the lucky one..I'm the pussy cat one.

Good luck

User

Posted 28 Mar 2019 at 10:17

Thanks darkrainbow - I am not sure I want to watch a video but yes, I do have pain mainly when 'moving' my middle like getting up and down out of a chair. Walking doesnt seem to cause pain but I do get some catheter irritation I think. Will slow down for a week I think and let my body do its thing without bowing to too much physio pressure!

Mark

User

Posted 28 Mar 2019 at 10:25

After a few days, I walked out the back of the house to admire the real outdoors. That was enough! Next stage was down the alleyway to the road outside my house to admire real life. That was good too. Next day, to the near end of the road. Day after was to the far end of the road. It was a few days from there before a walk round the block. And so it increased...

Two months on, I was rock climbing in the Peak District. In hindsight, that was perhaps a little too much too soon! The adhesions took forever to sort themselves out, and I still struggle slightly with them, two years on from RP. It gets better each month though.

Like many of us, I used up whatever my body was able to do on a daily basis. It seems to be a case of listen to your body, and really don't push too hard. It'll all come in time.

I'm now fully back to hard rock climbing, endurance events, scuba diving, long distance walking and building. Just takes time!

User

Posted 28 Mar 2019 at 11:29

Thanks Graham - that is a really good indicator of what I should be doing too! Sounds like you are in a good place of recovery now at least!

User

Posted 29 Mar 2019 at 11:28

Hi Mark,

These are my musings regarding my surgery by Professor Whocannotbenamedhere, who I guess was your surgeon as well.

I could hardly be more pleased with my operation, except that somewhere we lost 2” and I have total ED.

No cancer though (for now), so happy days.

Cheers, John.

https://community.prostatecanceruk.org/posts/t16224-Retzius-Sparing-Laparoscopic-Radical-Prostatectomy

User

Posted 29 Mar 2019 at 11:42

Thanks John - really interesting post and I can see some parallels although I didnt leave hospital with any medication outside the clexane injections (which dont seem to like me much but I will persevere a few more days). Had the same issues with the overnight bag. always seemed to be a kink or block in the road to bag heaven! I actually found the extensive bruising and catheter the most painful part!

I actually turned off the catheter on day 7 and had it out today. We were told to expect 4-5 hours there and were out within the hour! Turns out a suprapubic catheter doesnt need any monitoring post removal. Was pretty easy, just a deep breath and whipped out...phew.

Like you I am using the lightest Tena pad as my nerves were spared, but I have found on day 8 that an impending fart could spell a few drops...need to train that bit, although I suspect still a lot of stuff inside reducing in inflammation and filling in the gaps!

Interested to know how the prof described your surgery. He said mine went well but was 'technically difficult' probably due to the scarring from the 40 core biopsy 6 weeks before - did he find any issue with you on that side? He did say 40 cores was a lot, you had 42!!

Feeling knackered by lunchtime but overall, after 8 days, it seems each day does get better, pain subsides and it is nice to have no plumbing left in my body at this point!

Cheers,

Mark

User

Posted 30 Mar 2019 at 17:56

Hi Mark,

Do bear in mind that the nerves Professor Whocannotbenamedhere saved, control erectile function in the hope that you will achieve erections at some point in the future.

They are nothing to do with your urethral sphincters which control urine flow.

Keep recuperating!

Cheers, John.

User

Posted 31 Mar 2019 at 10:10

Thanks John...will keep that in mind! Recovery seems to be improving daily now which is great...less discomfort and having the catheter out seems to make a huge difference in all honesty!

Cheers,

Mark

User

Posted 31 Mar 2019 at 12:14

Bowels have been a bit crampy for a few days now - not constipated, if anything the opposite (but not watery). I am guessing this is a reaction to the surgery, drugs and antibiotics...any tips? I drink about 2 litres a day and I am looking at a fairly bland diet, almost no sugar, while this heals..

User

Posted 10 Apr 2019 at 22:26

One more ‘is it normal’ question. Now the swelling and pain has settled right down I have noticed a small amount of blood each time I pee, usually right at the end of ‘the session’. I am guessing it is normal and will settle and I am even wondering if the Clexane I have to inject myself with every day prevents quick healing in an area that is frequently disturbed by Kegel exercises or bowel movements! Will call the nurses if it doesn’t improve but good to know if this kind of thing is normal or others have had the same?

Cheers

User

Posted 10 Apr 2019 at 23:50

If it's a tiny amount ok. If you are concerned call the medics

User

Posted 11 Apr 2019 at 00:17

If it is dark, or little bits of dried or clotted blood, it is part of the healing process. If it is fresh blood, probably still normal but you could give your nurse specialist a call (if you were allocated one) or the GP - they might advise you to stop the clexane.

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

User

Posted 11 Apr 2019 at 08:14

Hi Mark,

Your experience sounds rather like mine, done in the same place by the same man. Also described as technically difficult due to large (60cc) prostate. This was the Retzius sparing technique presumably?

While I don’t have any quarrel with the man himself I was and remain unimpressed with the care at PC Guys, where my reports of bleeding were persistently dismissed as normal, (drink more, dilute the evidence!).

I was kicked out on schedule but ended up in my local NHS hospital that evening when blood clots blocked the catheter....... Stayed in 3 nights, had a blood transfusion, and a couple of scans. Yeovil Hospital care standards rather better! The clexane was halted immediately btw!

I have no idea how you can be walking miles already. My world was down to a few metres for weeks. It was probably 3 months before I could walk any distance.

Do bug the follow-up contacts if you have worries. I didn’t have much to do with them as the man himself was involved.

There is a full thread on all this on here but not clever enough to link to it on an iPad!

My advice would be to take it steady and that new blood at this stage is NOT normal, though there could still be old blood washing out of clots.

The better news is that bladder control was excellent from the outset, erectile function is fair and still improving and so far cancer control seems good.

Best wishes for a quick and full recovery!

Nick

User

Posted 12 Apr 2019 at 14:30

Also meant to say that your bruising is probably not bruising as such but a “blood shadow”. That is blood that leaked during the op and was not captured by suction. This spreads and diffuses and comes out looking like a massive bruise. My left side was completely black from hip to armpit and right side also discoloured. Painless - I had it pointed out to me by a nurse at the second hospital who never seen one like it.

This loss goes unrecorded as they only count what gets sucked up. My official losses were low yet I started with Hb of >150 pre-op, was 106 the morning after (a big hit) and had fallen still further to just 80 by the evening of the following day.

Suspect you also had significant blood loss - but I’ll bet it won’t be shown on your discharge notes.

I recommend steak, spinach and dark chocolate. Iron tablets have unwanted effects on the inner man.......

Nick

User

Posted 29 Apr 2019 at 11:58

Panicking a bit as 5 weeks post op I appear to have a wound infection. Very red and sore around belly button with a hot redness that spreads out about a palms width. Went to A&E and they did a urine sample and blood tests which seem fairly normal, then prescribed cipro (which always makes me feel a bit crap). It came on quickly yesterday hence the panic! Sent the surgeon a pic who also suggested an infection and cipro. No raised temperature but feeling tired and a headache!

dr google proved a disaster zone with sepsis, cellulitis etc all in the mix. Not sure I could do any more than go to a hospital to get checked. Redness and heat the same now, doesn’t seem to have spread, but worrying nonetheless...

It was all going so well and I think I have overdone my travelling and physical effort (stripping a floor 4 weeks post surgery also not the best idea). Hoping the antibiotics kick in but if anyone has had a similar experience please let me know (with a positive outcome, I have read all that bad stuff already on google :-()

thanks...

User

Posted 29 Apr 2019 at 12:14

I had an infection where the drain pipe was in. Red soreness spread wide. Luckily I was still in hospital so intravenous anti B. I’m sure you will be sorted. Please look after yourself for a while. Be a patient patient:-)

User

Posted 30 Apr 2019 at 01:06

Originally Posted by: Online Community Member

thanks...

Nearly 6 months post operation (RP)

I get sutures coming out of my tummy just above where my belly Button is.until Chris J and Cheshire Chris mentioned about sutures I didnot know about sutures at all!

You had operation only couple of weeks ago but still panicking I was like you I must admit that but please be patient try not to lift anything so heavy and dont be horney as well.

May I suggest you to Take Chris J....s last message very seriously please but do not drinks his lemonade!

D.R

Edited by member 30 Apr 2019 at 01:09 | Reason: Correction

User

Posted 30 Apr 2019 at 04:20

I had the same problem with ‘dissolvable’ sutures which did not. Three courses of antibiotics and three visits to the nurse later, they were eventually all removed and I could start healing normally.

The navel incision is the biggest, as that’s where they extract the prostate inside a plastic bag.

My friend says dissolvable sutures never do in her body, and they always have to be removed manually. The thread is so fine, you can hardly see it to remove it.

Get well soon.

Cheers, John.

User

Posted 01 May 2019 at 10:33

Thanks John, well it is still rumbling on. I had cellulitis under that wound and antibiotics are slowly resolving it but I also now have a Lymphocele which I had never heard of and is pressing on my bladder. They sometimes resolve on their own apparently and other times need draining which I am hoping to avoid! If anyone else on the forum has experience of symptomatic Lymphocele it would be good to hear what they did as I am not sure what to do (4 days in a row to hospital I want to avoid). I have the number to call but I just don’t know if it is a normal response to something that will clear or if they need to do something - a bit like choosing treatment options, Lymphocele treatment seems to also have options!

User

Posted 01 May 2019 at 11:03

This might help reassure you

https://eurjmedres.biomedcentral.com/articles/10.1186/2047-783X-16-6-280

User

Posted 01 May 2019 at 11:18

Thanks Jonathan, just when it was all improving I had a double-whammy of cellulitis and Lymphocele! Feel like I learn something new every day - not necessarily in a nice way!

That article seems to show it is more common than thought and certainly something never mentioned to me as any kind of risk. Maybe there are so many potential risks they can’t list them all! I am hoping the elephant antibiotics and rest will sort it but the pressure on the bladder is pretty relentless and uncomfortable! CT scan after an ultrasound also seems like using a hammer to crack a nut but I am glad they at least have the images to refer to if needed!

User

Posted 05 May 2019 at 08:50

So after Celullitis sorted I have a ton of other symptoms after the antibiotics! Not sure if any of you have had Ciprofloxacin and an adverse reaction - but I took it for 5 days and feel dreadful! Weird feelings, muscle pain, skin sensations, painful joints etc...anyone else suffered with this stuff?

User

Posted 05 May 2019 at 09:04

Have had Capri on a couple of occasions, once for a whole month. Don’t recall any particular side effects and it did have the desired effect. Everyone is different though.......

Should go quickly once the course is completed.

Nick

User

Posted 05 May 2019 at 10:12

The prophylactic antibiotic often used for TRUS is Ciprofloxacin, so chances are most people here will have had a 4 or 5 day course, and maybe you did in the past too.

Antibiotics always wipe out some of the gut bacteria, disturbing the balance, and everyone has a different mix/balance of gut bacteria, so this impacts people differently, and also depends on your recent diet. Disturbance to gut bacteria and thus food absorption can have side effects all over the body, but should fix itself soon after coming off the antibiotic. Some people think the live bacteria yogurts can help get gut bacteria settled down again after the course antibiotics are finished (no point whilst you are still taking them, and note to avoid diary for some hours before and after taking Ciprofloxacin, as diary absorbs Ciprofloxacin and stops it working).

User

Posted 06 May 2019 at 04:10

I understand faeces transplants are becoming in vogue for the benefit of the bowel biome.

I would be happy to donate as many people tell me I am full of s***! 😉

Cheers, John.

https://www.hopkinsmedicine.org/gastroenterology_hepatology/clinical_services/advanced_endoscopy/fecal_transplantation.html

Edited by member 06 May 2019 at 05:59 | Reason: Not specified

User

Posted 07 May 2019 at 15:22

Hi mark.

Cipro gave me all the side effects you describe. Felt like my skin was on fire and blurred vision. Still have pain in my tendons - both knees and ankles. I believe it's called being floxed.

My tendons are slowly improving after nearly a year. Still get neuropathic pain in my legs when exerting myself.

Hope things improve for you.

User

Posted 07 May 2019 at 19:29

Amazon7 0 Even worse this week - it is definitely the Cipro as I had a week's worth 4 weeks ago and felt a bit 'odd' but just ignored as it was only 5 days and didn't feel too bad once stopped. This time it has hit me big time and I can't believe I am dealing with this as well as PCa. It seems unfair but I try not to thing of it that way.

Seems it can accumulate in your body and actually bind to certain areas without leaving. Now it appears to have killed off some mitochondria and removed all the Magnesium in my body....feeling very rough.

I can deal with fatigue and even pain, what I am struggling with is the nerves side - peripheral pain and also the effect on my mood (another well known effect)

Not the right forum for this of course, but if you are offered an antibiotic and it is a Fluoroquinolone, think twice as I think there are many people out there suffering as a result...

How did you get any relief if you don't mind me asking?

User

Posted 11 May 2019 at 21:30

Relief has come over time. Haven't taken any meds to counteract the cipro' side effects. Did report the issue on the governments yellow card scheme.

https://yellowcard.mhra.gov.uk

Very frustrating to be prescribed ciprofloxacin with no signs of any infection. At least my PSA is undetectable and I am thankful for that.

Hope things improve for you.

Edited by member 11 May 2019 at 21:38 | Reason: Not specified

User

Posted 12 May 2019 at 11:30

Many thanks. Yes I feel unhappy that my main health worry right now has been caused by a pretty nasty drug. If I had known it was originally intended for chemo I would have asked for something different for sure! I am taking magnesium and MitoQ to try and eradicate it as I understand it can lodge itself at the cellular level and even affect DNA. Amazing it is still freely prescribed often as a first line antibiotic.

If I find anything that really makes a big difference I will let you know in case you have any lingering symptoms (muscles and tendons appear to be the longer term problem for most).

Thanks for replying and wish you good health too!

Mark

User

Posted 12 May 2019 at 14:01

Ciprofloxacin is a broad-spectrum antibiotic. There are many others including amoxicillin, so ask for a different one.

I am allergic to erythromycin, which makes me nauseous.

Cheers, John.

User

Posted 12 May 2019 at 19:01

It really doesn't strike me as amazing that it's still prescribed, Mark. It's an extremely effective antibiotic, particularly for urinary tract infections, and the overwhelming majority of people have no problems with it. I've been prescribed it many times myself and it's always worked well for me.

Now that you know you're allergic to it you can ask for an alternative, but it would be a case of throwing the baby out with the bath water to stop prescribing such an effective drug because of a small number of allergies.

Cheers,

Chris

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