second urethrotomy tomorrow for obliterative bulbar stricture

Kidney and urinary tract
1

HEADS UP, if you don't want to read about how the urethrotomy is done, don't read further. As I have explained the procedure to my current knowledge.

Hello, hopefully this info will help anyone else in a similar situation ( after iv posted late tomorrow / Tuesday, will also update every so often)

I had a 12 o clock incision urethrotomy back in may 2014 for a severe bulbar stricture, i was down to 4ml a second, i did a full review of it a while back on here, may help too.

The last one was successful at first but gradually regrew, after 119 days it had grown back enough to shut off the urethra and made me go into acute urine retention ( very painful, i know what contractions feel like for women after that, I'd rather of been kicked in the balls every 30 Seconds instead of contractions every 30 secs ) and had as high as 1.4 litres stuck inside. Since then i have had both types of catheters.

The technique they will probably use tomorrow is called a "cut to the light" approach.

As this stricture is a full seal the surgeon will have a much harder job, because during a normal urethrotomy there is still a small hole left which they dilate and place a guide wire through into bladder so they can accurately cut and prevent mistakes, but with obliterative strictures they can't place a guidewire.

My stricture is also in very close proximity to the urinary sphincter, so hopefully they don't accidentally cut it, or the nerves that are very close, don't want to be losing continence or feeling haha.

Will update post op when i can of how it went and the prognosis.

 

2

Ignore the top paragraph, i deleted the description of the procedure, thought it was a bit much haha. Although if you are looking for details you can Google the procedure.

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All the best Ollie

4

i had my first urethrotomy in Feb 2014, the Doc said it was upto me to go with urethoplasty but I chose against it.

Nov 2014, I started notcing blood in the urine again so went back to Doc and in Dec 2014 Doc did cystoscopy and dilated the stricture which had scarred from the urethrotomy.

2 days after cystoscopy I noticed significant bleeding post urinating.

Went for a flow test and Doc said flow is good and that blood should heal.

I think the scar has torn as I've never bled this much even with the original stricture.

Got to wait 8weeks to see if it heals then I can elect for urethroplasty.

My doc has always maintained that urethrotomy is low risk but also low success rates and better to do urethoplasty.

Good luck with your urethotomy but dont be surprised if you are back under the knife getting urethoplasty done.

 

5

Got cancelled.....

Got there, nurses did the checks, chatted to anesthetist and urologist, i was second on the list.

Then I got told they hadn't been able to get a bed for me to have in the extended stay area or possibly overnight incase i had delayed bleeding like I did last time.

If I went ahead with it it would of been in, done, wake up, on my feet, out the door.

Last time I had delayed bleeding for a few hours post op and lost about a litre in recovery room, so it would of been ideal to have a bed so they could monitor me for bleeding. Didn't want to get home and find i was bleeding out and die haha.

Even though I said last week at the pre op assessment "I'll need a bed for a while post op" 

So i was given the choice of 3-4 weeks to get back in for urethrotomy, or change to urethroplasty which would be 8-12 weeks but a 80-90% permanent cure rate as opposed to urethrotomies 95% recurral rate. And also my stricture was more complex, he'd of had to pierce the middle and hope the blade didnt catch any nerves or the sphincter or go through the wall into the blood supply, then place a guidewire through that hole and carry on as a normal urethrotomy.

After all this mess up, i needed my suprapubic catheter changing as I only had 2 weeks left on its 12 week allowance, so we thought we'd replace it there instead while I was there, i asked if I could have a more comfortable latex one preferably with a hydrogel coating. They didn't have any, only the uncomfortable all silicone ones, so I asked them to arrange a district nurse to come out and change it.

Set off home, got in a taxi, was half way home, the hospital ringing, district nurses aren't allowed to do the first change, has to be in the hospital by the urologist... Turned the taxi around and went back, f***ing he'll i wish they'd of put me to sleep to do it, I'm a very pain tolerant person ( crushed a finger end between some dumbells at gym once and barely realised I'd done it)  but felt like I'd been stabbed every time it moved, was instantly in tears, man tears,  ,  if I was given a mandatory choice between having that SPC change pain again or being kicked in the testicles, id hands down choose the nutcracker. Did not expect a simple SPC change to be so painful, was shivering in pain as he was doing it. 

All this because they simply had no beds available, this is at york, although the over abundance of patients is happening in quite a few places.

i don't blame the nurses they do a great job, i blame the people higher up for not hiring enough staff and workforce and not being rush ready for winters illness. And not investing enough into equiptment and facilities, 2 of the machines that check blood prssure, heart rate, little thing on wheels they pull round to do those then push back, usually one in every bay, two of those broke on front of me. Took 3 machines to take my blood pressure.

Would really of liked to just have it all over and done with for at least 6 months ( possibly longer as this time they were going to put me on a self dilation regime to keep it open) but now I'm waiting a further 8-12 weeks. Yay.

6

Yeah I changed my mind to the plasty after today got cancelled, they offered the change, i was on a trial called the OPEN trial, 500 men with recurrent bulbar strictures, 250 randomly put into plasty, 250 into repeat urethrotomy, and see which is best value for money and best for health reasons, i was chosen as urethrotomy ( i originally opted for plasty back in September but was swayed when they mentioned the trial).

I don't like the possible side effects, yes the same side effects are present in urethrotomy but like 20x less chance statisticly. Apparently the chances of having something like severing of erectile tissue causing dysfunction is like 10%, shortening of penis for up to a year is very common, severing of cavernosa nerves causing loss of some or even all feeling is like 5-10%, at 23 and still looking for the right woman id rather not risk those, but the earlier i get this problem cured the longer time I'll be free of it rather than having to have repeat urethrotomies and self dilation for life.

Apparently aswell about 80% of people who get urethral cancer have a history of strictures. Get rid of the bad tissue and hopefully the chance of that ever happening.

7

Changed back to urethrotomy, also been rescheduled for a week on Monday after complaining. ( the fact that in may as a none urgent, time I waited for this op was 8 weeks, urgent status this time 10-12 weeks.... " Jackie chan wtf face&quot

I would prefer to be rid of the whole problem but frankly I don't feel ready to take the risks of the open plasty, with my stricture being so deep and pretty much a high chance of something being damaged due to the location.

Plus I will be losing 1.5 or nearly 2 grand in loss of wages if i waited the 8-16 weeks, as I'm now on statutory sick pay... Which is crap. And I'm cannot afford that. So I'm pretty much forced to choose the temporary urethrotomy for now, if it recurs again I'll go with the plasty.

Will update with how it goes when iv had the urethrotomy on the 19th, IF the bed issue doesn't happen again haha, if it does I'll just sit in the walk in centre for days until they see to me haha.

8

best of luck mate

9

Got it done, was looking like it was going to get cancelled again because they'd overlooked the reason it got cancelled last time, the haemophilia bleeding condition and need for monitoring, i was first on list but had to be put to last out of 3 as I needed a sedative to calm me and prevent panic attacks but they came to take me down 30 mins after taking them all they hadn't really taken full effect, was 1 big room with all the staff in there, i started to have a panic attack so they quickly gave me gas which knocked me out slowly after a minute, i tried fighting it without meaning to but it worked, then they will of given the actual anaesthetic after that.

Apparently was all good, re opened it, they used a flexi scope in through belly stoma for a second viewing angle with the stricture being a full seal, he made a small hole in it and placed a guidewire and did the standard 12 o clock incision. Apparently it had gotten a bit longer since last time, about 2 cm as apposed to 1 cm.

Left a 22f catheter in place which I'll have for a week. And get removed back here then a flow test.

Since I entered a trial they will check up on me every 3 months for results and things.

Gonna get some sleep now. Or at least try, got a loud snorer in next bay to me.

Will update again soon

10

From Ollie64 writings I am so glad that got Bupa and didn't attempt to sort the strictures on NHS. Would probably still be getting told that bleeding is due to me twins my belt too tightly around my belly. Yes that's what NHS told me for around a decade before I was able to get a camera cystoscope done.

Anyway Feb 2016, went in for urethroplasty and I am one week post op. Prior to Op I always wondered if I had done right thing opting for urethroctomy which clearly didn't work for me.

Having done urethroplasty, I am sure I made the right choice to go against my consultancy advise and try the urethroctomy first.

Was no way mentally prepared for this long recovery times of a urethroplasty couple of years back.

Urethroplasty was on Tuesday. Woke up with a Foley catheter. And the catheter is such a nuisance.

Day after the Op, Nurse emptied the bag, was trying to ignore the catheter all morning. One hour later, doc came to check and noticed the floor and bed were soaking. Catheter pipe had disconnected from join and I had wee'd all over the place.

Came home following day. Hadn't done poo and getting really bad tummy aches, and crazy urges to go for a pee. Must be full tummy pushing on catheter and bladder.

Been eating prunes before and after Op to try keep bowels moving.

The nuisance of the catheter and not having soft stools is really what causes me most problems.

Called Bards UK and requested a sample stat lock to hold the catheter in place better. But still end up taping it to my leg.

Trying to keep end which enters me clean, used some instillagel after a shower to reduce movement pain and lubrication. But woke up in the morning with burning sensation and lower abdomen pains. Symptomatic of UTI. Already on the meds for it so not a lot anyone can do.

Going toilet I end up pushing hard and bleeding from my meatus which was sliced so big catheter could fit.

Trying to keep the stitches clean but no real idea how to touch or clean them.

Bought Man Nappies to catch the drips of blood and urine from the catheter entering me.

So I guess most of my issues so far are catheter related. Accidents too like I went to do poo and accidentally knocked the valve and emptied the bag onto the floor.

Stil taking paracetamol to avoid any pain from stitches or scrotum area.

One week down, one more week and catheter will be out !

Keep you posted on how the recovery goes.

Got a 2wk Thailand holiday booked in 4 weeks to recover properly.