4 days post urethroplasty
Posted , 5 users are following.
firstly apologies for any spelling as have had some painkillers and am perched awkwardly
Hi,
im 4 days post op and thought id share my experience so far.
I was due to have a mucosal graft for a failed urethrotomy last year, the strictures were on the bulbal section.
I cam round from the op with a nosebleed from nasal intubation and can remember the dr and the team tellingme the op went well and they didnt have to graft from my face , a quick poke with my tongue round my mouth and i passed back out again,
Surgeon came to see me and said he was amazed I could pass urine and no wonder i had been having trouble as the stricture ,although only a mm or so was so tight and diseased (im 41) they could barely identify an opening, it was also right on the entrance to the bladder bits with a diseased segment,so they removed this segment 10mm or so and the diseased section and sewed me back together.
He was genuinely pleased with the outcome and said I would be too and explained about the effects etc and that they had had to 'dig deep' to remove it.... ermm....
anyway that was good news, i was pretty ropey through the after effects but had good pain relief. am due back in 4 weeks , district nurse popping out etc....i wont go into the hosp care but ipaid for the use of the in hosp private unit who have an nhs bed scheme where you can pay for a private room but have nhs treatment, it was superb.
So ....pain...yes , camehome yesterday and catheter is going to be a drag for the next feew weeks but manageable, managed a shower and with the useof a mirror checked my wound was okay, my testis and penis look like a couple of aubergines, imassured thhis willgo down but is very uncomfortable. Wound site is clean, dull ache and a bit sore so am sat/laid downmost of the time in between shuffling round the house like johnn wayne. My advice to anyone, tight pants essential, keep those plums contained!!
I feel washed out, a bit 'oh god what have i done' but trying to keep positive as its early days....
Bowels..... i cannot emphasise enough that they need to get moving and withouth straining and blowing the work the surgeons done and the wound apart... they gave me lactulose in the hosp which does soften the stools but with oramoprh and codeine onboard my bowels also needed a stimulant to get them moving, finally this morning and perched with one leg on the door of the bathroom and one cheek on the loo i had a moving experience which was impressive i almost thought it deserved a standing ovation, but settled for feeling a bit feint and sweaty , i know its early days but am so glaad its over, both me and my partner workin the nhs so the sensible infecton control , catheter cleanliness and wound care are all in hand.
Im scared about the swelling and its got me down again today, so am laid on the bed now bit hazy with my feet and bum propped up and the aubergines under a coldcompress.....
Any questions please ask and any help or advice welcome, ive read horror storys about wwonky willies andshortening so i shall be monitoring closely, i did ask the surgeon andd he said the area it was shouldnt affect anything long term.
chris
0 likes, 18 replies
ollie64 chris77947
Posted
I had first urethrotomy in may, A&E visit in September from urethra shutting off, chose plasty in the morning after I was kept over, visited GP a couple weeks later and saw on computer referral was sent, then in October I went in to have cath changed to suprapubic catheter, and was told plasty referral hadn't been sent as they were "still waiting on my decision"
So i entered a trial i was offered enrollment in called the OPEN trial, you may of been shown about it because you should have been a candidate for it, men with recurrent bulbar strictures which had had one previous op. They are randomising 250 into repeat urethrotomy and 250 into urethroplasty, to see which is more cost effective. Iv heard different things about sucess rates, some say plasty is a 80% permanent cure rate, some say it lasts about 5 years, some say urethrotomy lasts about 2 years but mine came back after 3 months when i wasn't doing self dilation. Will be doing in a week when i get this catheter out.
I only had a second urethrotomy Monday and iv got a 7.3mm cath in until next weeks Thursday, woken up every 30 mins during night from painful sleep erections haha, i bet you can relate to that. Would of thought they'd give something to stop them, or a libido suppressor.
I was due urethrotomy on 5th but it got cancelled an hour before due in theatre because there was no beds available for me post op to be monitored for delayed bleeding like I had last time I had this procedure.
Was going to be delayed 4 weeks but I got urologist to get me in on Monday, 10 weeks wait for something that I was told I was down as an urgent for, which i waited 8 weeks for last time as a none urgent haha.
After it got cancelled 2 weeks ago I changed my mind to plasty on an impulse but changed back, i don't think that the full open plasty would be good for me, i heard it's quite a bloody procedure and I lost enough post op from both urethrotomies ( got moderate haemophilia). I also didn't feel ready to take the possible side effects risks, i'm only 23 and dont really want to risk function or sensation loss from damaged nerves or incontinence yet, also was told that if i changed to plasty it'd be a 8-16 weeks wait longer, and with suprapubic catheter causing numerous problems including infections, bladder spasms and contractions which sometimes were bad enough to drop me to my knees and cause backflow to kidneys, and how id be losing about £2,000 because of the extra wait, i changed back to urethrotomy.
Got there Monday and they had forgotten the reason it was cancelled a couple weeks ago and we're hesitant about going ahead, they'd got me a bed but the haematologist didn't like the idea of going ahead without a plan to control bleeding. But they came to an agreement and still did it.
Was about 3:30pm when i went into theatre and 6pm when i woke up in recovery. Was a bit more complicated than a normal urethrotomy, required a flexi scope in belly stoma hole to come to other side of stricture and shine light through, and to use rigid scope to cut towards the light, was a full seal so no guidewire could be placed until a hole had been made, plus i didnt want him catching the sphincter with blind cutting and making me incontinent.
This time I will have to self dilate once a week, one of the downsides to urethrotomy,
i was told in urethroplasty strictures longer than 2cm they like to use a graft, as anything longer causes significant shortening of penis and how the other tissue would prevent re attachment of gaps longer than a few cm.
I hope yours went all ok, i may have to have it done if / when mine comes back, it's probably inevitable but the self dilation can keep it at bay for up to 5x longer than without it, or even more. I just don't feel ready yet to take the risks of the plasty.
Also read about how being in the lithotomy position for more than a couple hours can sometimes cause compartment syndrome and they have to do deep cuts into the thighs to releive the blood flow problems. With my bleeding condition id probably need transfusions even if the op went normally
which is another reason I'm hesitant about it.
I lost about a litre of blood post op after my first urethrotomy in may, felt drunk and like I was having a heart attack from more than a slow walk for a week, lost about 500ml Monday, although the tube they left in is stopping it from flowing too much.
I'm surprised they did yours with one stricture being so deep, mine is about 15mm before the sphincter, i think he said it's grown from 1cm long to 2cm long, wasnt very dense.
I hope you have a fast and good recovery and don't have any side effects, and that it doesn't recur. If you could update every few weeks or so it would be appreciated as I'm still trying to decide what I'd do if/when mine recurs, and if itd be worth me risking the open surgery, or just stick with the smaller less risky urethrotomy, sometimes strictures can stabilise after urethrotomy but very rarely.
I just can't make my mind up whether I should risk the plasty and hopefully get rid of the problem earlier and not have to go through several more urethrotomies before having plasty anyway in a decade or so.
Sorry if iv rambled a bit, still not able to think properly from hangover from anaesthetic, only been 48 hours now and it was a strong one. Monday was my 6th general anaesthetic.
I was scared about it and started to get a panic attack in the operating room before they knocked me out with some gas before the actual anaesthetic. I had a little bit of pain awareness in October during suprapubic catheter insertion.
chris77947 ollie64
Posted
Am 41 but still party hard and read the usual horror stories online about your penis being shorter/bending/falling off etc etc but a lot of the stuff online us grimm and is enough to put u off. Have a chat to the surgeon, they will have to take your haemophilia into account... as you said your'e 23.... i opted for the plasty as was sick of the sight of the hospital! i live in eastbourne so am normally the youngest in urology!! id post pics but it aint pretty! the surgeons left a neat scar though.
Sensation wise i did panic 3 days after where my entire knob and balls looked like a battered aubergine and melons! weird things are happening, had some discharge around catheter when sat awkwardly etc but nithing major, hate having a catheter in though!! did get a hardon last night during kip which woke me up with a start. was initially pleased i was still able to then the psin started looked down and saw a bruised and blue knob looking sorry for itself!
am sure itll all sort out, am back on 5th feb for urethrogram 😳 fingerd crossed..... chris
ollie64 chris77947
Posted
One of the district nurses that came to see me back in October day after the pubic tube was put in said her partner had the same problem as us and had a pubic tube for two years then decided on the urethroplasty, but for him she said they opened it up, and sort of scraped / shaved out the scar and re sealed it... I mentioned this technique to my urologist Monday and he seemed confused and said they wouldn't of done that as it's not a general technique.
I meant to ask my urologist if he would use some mitomycin C but forgot and on the op summary it isn't mentioned. He also stuck with the 12 o clock cut rather than a more complex one, so I tend to think I'll be back some point in the future
ollie64
Posted
Was the same last time, both said different things haha, last time one said I'd be taught to self dilate, but the urologist said otherwise. Either communication is not very good between them or they both try dictate what is to happen haha.
Another user of this site said there are some patents in place for a topical treatment of strictures with mitomycin C or botox. Mitomycin C i think is a sort of chemo injection and kills off the cells, if it kills the cells which would scar it would stop the scarring. So i may hold on in treatment choice and hope they advance more with endoscopic treatment. Maybe if they could do keyhole through the perineum rather than opening it up.
Although it may be worth just enduring what you are going through for a high chance of permanent releif. More pain more gain i suppose.
hunter1031 ollie64
Posted
james06284 ollie64
Posted
Just reading a previous post of yours and wondering have you come across any alternative to urethraplasty for bladder neck stricture.
Like you I've had two urethrotomy procedures, mine were within two months of each other. Uro recommends daily dilation for a year but was not very forthcoming about what happens after that. Five months on and daily dilation of the bladder neck stricture is working but Uti (Serratia Marcescens) is ongoing with back pain in the kidney area.
James
hunter1031 james06284
Posted
Is there any reason why your not doing the urethroplasty ? My surgeon warned of certain ED with all those dilations
james06284 hunter1031
Posted
My Uro does not recommend Urethraplasty due to the proximity of the bladder neck stricture to the Sphincter.
Sphincter damage seems to be an issue with Urethraplasty. I have not heard of dilation causing ED before.
It's only ten months since my RP so I'm not keen on having to redo the surgery.
James
hunter1031 james06284
Posted
hunter1031
Posted
james06284 hunter1031
Posted
It is a balloon dilation catheter that dilates to 8.7mm or 26Fr but costs €220. Uro says it's ok to reuse long term but I don't agree.
I am seeking a referral at d moment.
Thanks for clarifying about the specialist:-)
ollie64 chris77947
Posted
chris77947 ollie64
Posted
hows u
ollie64 chris77947
Posted
Yeah I'm the same with sleep, taking more painkillers at night time than in day haha, last night I actually got a whopping 5 hours sleep, between 9pm and 11 am though, iv found curling my legs up to my chest helps reduce discomfort from the sleep erection.
I asked the doc for something but there's nothing that does stop them Sadly, you'd of thought they'd develop something, a strong enough one could counter healing Or re start bleeding. My bleeding has only just settled down, good thing I have disposable pads otherwise would of gone through couple dozen pairs of underwear and several pairs of trousers already already :S.
Really want the dam thing out, i bet you do too, driving me mad, on even more nitrofurantoin for another infection which has made everything inflamed inside but nitrofurantoin is supposed to be the best UTI fighting one you can get from a local GP, it's made specifically for UTI'S. You'd probably be best getting a sample dropped off at docs and checked, you'll most Likley have an infection, catheters usually always cause them. Or get district nurse to dipstick check some wee and order you some.
I'm getting mine removed on 3rd Feb, they decided on 15 days, they don't normally leave them in longer than 7 days or even 3 days after urethrotomy, maybe they think it will allow other to heal wider Better, can't bloody wait. Tempted to cut the balloon port and take it out myself haha, but i know it'd be silly.
You'll probably find it uncomfortable to sit for several weeks or more after, i found it uncomfortable for couple months after last urethrotomy so yours may be longer since was a more drastic op.
Did you find out a name of the surgeon who did yours and how experienced he or she is? If or when i chose to get it done if want the most experienced available one, i know there's only a couple dozen or even less specialists that do them. I heard that there's a few in England who do a couple of them a week, so they'll be the best experienced i think.
ollie64
Posted
Iv been trying to design a new endoscope to remove a portion of the stricture from the inside, not all of it but enough to re open the tube wide enough for a good flow lol. Gonna try get the basic drawings and stuff done so I can show my urologist on 3rd when i get the tube out. My drawing skill is...... Well put it this way, i still use stick men haha.
If they like it and make it, it may become a new option to stricture treatment, the plasty would still be the statistical best option but as you probably found, it's an intimidating option, and has gruelling recovery and potential for function loss :S.