Tag: surgery

Two-stage urethroplasty: stage 1, 1 day after surgery

I had a fairly disturbed night, waking up a lot. After I got some morphine I finally managed to get off to sleep properly but was woken up by the searing pain of an erection at about five. Like last time, it’s nice to know things are still working but I could do without the pain.

Cornflakes with yoghurt and a cup of coffee for breakfast, without any serious pain from my cheek. It’s really amazing how quickly that heals.

At rounds I was told I could get up a little bit, but shouldn’t walk about too much. My night-time drug prescription was changed too, so I’d get a morphine tablet to take if I woke up during the night. The dressing was looking fine, no blood seeping through.

The cannula in my left elbow had come quite loose, the dressing hadn’t stuck very well in the first place and was hanging off. I asked three nurses to fix it but they all forgot. Eventually I managed to get a nurse who could do that and bring me a bowl so that I could brush my teeth.

I got up in the afternoon to change from the surgical gown into a nightshirt. Not much of an improvement but at least it doesn’t expose my arse to all and sundry. I made it through to the bathroom in the evening to clean my teeth. Getting in and out of bed is pretty painful but standing was OK.

During the day the confused elderly guy in the next bed was discharged and a new old man appeared with his wife. At least they said hello and introduced themselves.

Two-stage urethroplasty: stage 1, surgery day

I barely slept due to a combination of nerves and my roommate repeatedly switching his light on and off (he’s elderly and apparently very senile). I was first on the surgery list, so the nurses popped up around 05:30 to remind me to shower and change into the fetching totally-open-up-the-back surgery gown.

Right on time, at 08:30, I was wheeled down but there was a queue in the pre-op area and it was 08:45 before someone came to fetch me and after 9 before I was taken into the operating theatre. I’m pretty familiar with the whole procedure, the staff were very pleasant and chatty, and before long I was out.

As usual my memories from recovery are a bit confused. I’d asked them to call my husband when I got out of surgery and I remember reminding them while I was still pretty out of it, but they never called him. Fortunately he’d guessed about the right time anyway, so he was waiting for me at the ward when I was wheeled up there a couple of hours later.

Compared to my previous urethroplasty I’d say I had a lot more pain on waking up this time. In recovery I needed some extra paracetamol for the aching in my groin and then as the local anaesthetic in my cheek wore off I needed a couple of doses of morphine.

Up at the ward the groin pain was OK, a constant dull ache, but I needed some local anaesthetic gel for my cheek to be able to eat the horrendously dry fish we got for dinner. As always I was hungry rather than nauseous after the general anaesthetic.

The surgeon came to see me in the afternoon and she seemed very happy with how things had gone. She said there were 5 cm of urethra that was completely scarred and unsalvageable but the rest looked healthy. That was a relief, I was worried they’d discover more scarring. The pain in my cheek was explained by them having to take a roughly 5 by 3 cm chunk of tissue to make the graft, much more than last time.

I’m not allowed to sit up fully today and I’m to stay in bed for five days altogether. I was glad to hear that I am allowed to get up to use the toilet, so I won’t have to poop in a bedpan. Small mercies! They left in my suprapubic catheter and I’ve (apparently) got a urethral catheter through the healthy urethra near the tip of my penis, looping out over the dressing covering the graft and then back in at the base of my penis and into the bladder.

So now I’m just relaxing in bed and trying to find ways to keep myself amused. It’s just as well I planned ahead and brought my laptop. I took a photo of the dressing, but it’s not especially interesting.

In my online medical records I can see the surgeon’s full narrative of the surgery, so here it is (translated from Swedish):

Patient in flat position, surgery area washed and dried sterile. Begin to apply gel in the meatus, insert a 14 Ch catheter circa 5 cm then dead stop. Incision in the skin over the urethra. Subsequently with scissors through the subcutaneous tissue. Place urethroplasty hooks. Open the urethra along the midline, where it is significantly fibrotic from the incision and circa 5 cm proximally, then opens up nicely. Decide that I must excise the whole fibrotic area. Measure a strip 5 cm long and barely 3 cm wide. Subsequently the graft is taken from the right hand side of the cheek, draw ut 5 x 3 cm after I marked out the opening for Stensen’s duct. Inject local anaesthetic under the tissue. I separate the graft when I reach 5 cm length. Control of haemostasis with diathermy. Place a compress with xylocaine-adrenaline in the cheek. Trim the transplant. Mesh [the graft]. Place the graft in position and fasten with a few stitches to the edges and also 3 rows of sutures to hold the graft down onto the corpora. Then stitch the skin edges to the graft and urethra, which I spatulated circa 6 mm at both proximal and distal ends. Lubricate the urethra. Lay a mepitel compress over the graft and a 14 Ch catheter in place. The penis is laid up towards the belly and pressure bandaged. Finally checking the wound in the cheek, finish with two single stitches since I don’t want to burn right by the opening of Stensen’s duct.

Still waiting for a surgery date

They weren’t kidding when they said I’m low priority, I’m still waiting on a surgery date. So it looks like it definitely won’t be happening in April. May is difficult because I’ve got to travel for a wedding in the middle of the month and the surgeon says I’ll need a couple of weeks after surgery before I’m fit to travel.

That pushes it into late May or early June and if they can’t manage to fit me in then it’s summer holiday season and there’s basically no chance of getting any non-urgent surgery done until late August.

This is starting to get really annoying. I’m kind of scared to plan anything just in case it clashes with surgery but the hospital are really bad at communicating and unwilling to plan more than about a month in advance.

In the meantime I had my suprapubic catheter replaced. I’d previously had a transparent silicone one but the nurse put in one of the brown rubbery ones instead. I don’t seem to get on well with those. It was irritating my skin, making the wound bleed and I was getting a lot more bladder spasms. So I popped up to the hospital the other day and got them to replace it with another transparent one and things seem better now. Of course the nurse did that thing of treating me as if I was making it all up.

I’ve also been using a flip-flow valve with my catheter for the last couple of weeks, to try to remind my bladder of how it feels to fill and empty. At the moment I’ve still got a leg bag attached to it, since when I need to go it’s usually been pretty urgent and I ended up with bladder spasms forcing urine out through my urethra. I’m hoping to eventually change over to not having the bag. One thing I’ve noticed is that it’s really very difficult, when I’m standing at the toilet with the valve open, not to relax my urinary sphincter and let urine out through my urethra. If I do that too often it gets very irritated and painful.

Waiting for the next surgery

So I had to drive two hours in each direction for a twenty minute meeting with a surgeon today. Overall it was probably worth it though.

After a quick review of what had already been tried she went over the planned two-stage urethroplasty and gave me some detailed information about the first stage, especially recovery. It seems I’m going to be kept in the hospital for about five days after the surgery, more or less confined to bed.

I’m already on the waiting list, it looks like the first stage surgery will be in April or March. On the other hand, since the stricture won’t actually kill me I’m pretty low priority.

Another failed urethrotomy attempt

So all of a sudden the surgeon who’d assisted with my urethroplasty back in May became interested in my case again. This time he wanted me to travel up to the hospital he worked at, a couple of hours north, so that he could do a cystoscopy under general anaesthetic and maybe attempt a urethrotomy.

We drove up, turned up at the ward at 09:00 like they asked and then there was the usual hanging around. I eventually got taken down to pre-op around 11:30 and then into surgery around 12:00.

By 14:00 I was back up at the ward. I still had a suprapubic catheter (although they’d replaced the one from two months ago) and no urethral catheter, so obviously they hadn’t succeeded with the urethrotomy.

When the surgeon came round he explained that as far as he could tell the whole grafted area was now blocked and they’d have to do another urethroplasty. This time he’s recommending a two-stage urethroplasty. That’s where they open up the urethra, do a buccal mucosal graft and then leave it open for six months to heal. After that they “tubularise” the graft by sewing the urethra closed again around a catheter. Success rates are apparently very good (I’ve seen figures as high as 98% but in this field there are a lot of not especially good studies) even with complex strictures of the penile urethra like mine.

There are two places in the country that can do this, both apparently equally good. So it’s a choice between two hours north (with a roughly three month waiting time) or three hours west (waiting time unknown). The next step is to pester my local urology department to contact both hospitals and give me a referral.

After the failed surgery

I got a really good night’s sleep back at home, apart from the usual thing of waking up every time I rolled over to make sure the catheter tube was OK.

Back at the hospital I had a short wait until the doctor came on rounds. He said he’d told the x-ray people to make me an appointment in a couple of weeks and discharged me. I returned home with a big bag of catheter and dressing supplies and went back to work after lunch.

The district nurse at my GP surgery called me at work during the afternoon to make an appointment to have my dressing changed. We can mostly handle that ourselves but it will a useful opportunity to get more supplies and maybe some advice on the best way to deal with the catheter.

One problem is showering. No matter how hard we try we can’t find a way of arranging the dressing so that water doesn’t run along the catheter tube and soak the inside of the dressing. That means I need to change it every time I shower and I end up only showering every other day.

The bladder spasms haven’t been as bad this time around, probably because I immediately asked for medication to prevent them. One positive sign has been that I’ve actually been able to pee a little bit, even though the suprapubic catheter isn’t letting pressure build up. That suggests that the inflammation in my urethra is going down already.

Disappointing surgery

I turned up at the hospital on Tuesday for what I’d expected to be an outpatient urethrotomy. The staff on the ward seemed to think that I’d be staying in overnight but bad communication is pretty standard for my local urology department.

After changing into the not especially flattering gown I waited for a couple of hours before eventually being taken down to pre-op. Then I waited for about another hour before I was taken to theatre.

Some time later I was coming round from the anaesthetic and I vaguely remember some discussion about a damaged and leaking suprapubic catheter. They decided to just tape it up to fix the leak.

Once I’d woken up a bit more I had a look and discovered that I had a suprapubic catheter in but no urethral catheter. When the surgeon passed by (very briefly) I asked him if they’d done the urethrotomy and he said they had but ran off before I could ask any more questions. I was still pretty woozy at this point anyway.

I was feeling quite OK otherwise, I don’t seem to get nausea from general anaesthetics. When the post-op nurse said I was ready to go up to the ward I told her I was starting to feel pain in my belly she said she’d tell the ward staff and she’d also ask them to change my urine-soaked bedding.

I had to wait about an hour until they finally came to take me up to the ward and had several more hours of sitting it my own urine before the bedding was changed and I got some painkillers. The nurses kept asking me if I was in pain but then forgetting to do anything about it.

Eventually it became obvious that I wasn’t going to get to see a doctor that day and I’d have to stay in overnight. One nurse mentioned something about them abandoning the urethrotomy but that they didn’t have any more information.

Dinner was a surprisingly decent meatloaf. Oxycontin and earplugs helped me get an OK night’s sleep despite all the snoring in the room.

Finally I got to see a doctor during morning rounds. He said that they’d discovered that my urethra was almost completely closed and they’d given up on the urethrotomy. In 2-3 weeks I’d have a urethrogram and then they’d work out what to do next. In the meantime I’d have to keep the suprapubic catheter.

I explained to him just how angry I was about the whole situation. How I’d written to the surgeon about how severe my symptoms had got, so it shouldn’t have been a surprise, and how it had only got so bad because they’d wasted so much time scheduling my operation. He said he’d arrange for me to meet with the surgeon to discuss it with him and that I should get to go home later that day.

The rest of Wednesday I mostly passed hanging around, waiting to meet the surgeon and to be discharged. When I eventually got to meet him the surgeon was very conciliatory and acknowledged that things had gone wrong but that they were just following procedures. He also explained that I need to wait a couple of weeks before the urethrogram to allow the inflammation to go down.

I then had to wait for the suprapubic catheter to be replaced. Although it wasn’t leaking I’d noticed that it was sucking in air bubbles and I wasn’t happy with the idea of going home with it already damaged when I’m going to have to live with it for weeks. On the other hand, after my last experience I wasn’t looking forward to the procedure.

This time the new catheter went in on the first attempt but the sensation of having my bladder filled to bursting point was just as horrible as before. They’d also not waited very long after injecting the local anaesthetic, so it was a bit more painful too.

Because of all the hanging around it was now too late to discharge me properly but the staff agreed I could go home on “leave” for the night.

So many delays, so much pain

I’ve been meaning to write an update for a while but never quite got round to it. Things have got much worse and I’ve been having a lot more hassle with the urology department.

It seems that their efforts to dilate the stricture have (maybe unsurprisingly) instead made it contract more. Over the months since my follow-up appointment it has got to the point where it’s now worse than before my urethroplasty. Peeing is agony and I’m now having problems with suddenly and urgently needing to pee, often at inconvenient times. Sex is just impossible because of the pain of ejaculation.

While this has been going on I’ve been keeping in touch with the urology department about getting an appointment for urethrotomy. At first I got a letter giving me a date to go in for a pre-operative examination but no operation date. Then they cancelled that.

It turns out that the senior urologist had decided (for reasons nobody I’ve spoken to can/will explain) that I should be referred off to the surgeon who’d come here to assist with my urethroplasty. Of course, they didn’t bother to phone or email him to get his opinion and they sent the referral off by post.

Weeks passed without anything useful happening. I emailed the surgeon I’d been referred to and he quickly replied saying that there was no need for him to be involved and that he’d referred me back to my local hospital.

I emailed the surgeon at my local hospital with this news, but apparently he couldn’t do anything about it until he received the referral back, by post. Another week passed and I emailed the local surgeon with a detailed description of my current situation. He forwarded me on to the nurse who schedules operations, asking her to find an appointment as soon as possible.

So I’ve now finally got an appointment for a urethrotomy next week. Of course, given that the stricture is now much worse I doubt that there’s much chance of long-term success. I fear there’s another urethroplasty in my future.

Added page with articles and studies

I’ve added a page with some references to articles and studies about urethral strictures and their treatment that I found useful while I was dealing with doctors who weren’t very familiar with the subject.

Knowing when they don’t know what they’re talking about is very useful. It also gave me some reassurance that I was making the right decisions about my treatment.

Operation day (Tuesday)

I got up at 05:30 for the 300 ml of pineapple juice that was all I was allowed to drink before the operation.

On arrival at the urology ward there was a bit of a wait because “my” bed was still occupied. The hospital is suffering from terrible bed shortages, so that wasn’t a huge surprise. I ended up in a room that had been “closed” and was partly used as an office for the final checks and to change into the stylish surgery clothes.

A very friendly nurse and two student nurses wheeled me down to the surgery department, where there was more waiting in the pre-operative room. I had my last pee for a few weeks and then one of the students nervously put a cannula in (and did a good job). Lying there in the almost empty room I felt surprisingly relaxed, although a bit shaky, which could have been due to the lack of food.

The anaesthetist was being held up by another patient, so the anaesthetist nurse wheeled me through to theatre and they got to work preparing me while they found another anaesthetist. The pre-med made me pleasantly woozy and I vaguely remember chatting with the staff then I was out like a light as soon as the anaesthetic went it.

Waking up was much less peaceful. I don’t remember much, apart from being convinced that my husband was there (which he wasn’t). The nurse told me I had been quite confused and difficult.

I stayed in post-op for quite a long time, at first quite disorientated but then just bored. I got to talk to my husband on the phone. They had me lying on my right side (they’d taken the graft from my left cheek) but the bed was too short so my legs got really stiff and painful and nobody seemed to pay attention when I complained about it. I wasn’t feeling any other pain though, they’d given me fentanyl.

A surgeon passed by and told me that the surgery had gone well but that the anaesthetists had had some trouble. They couldn’t get the breathing tube in through my nose, after attempting with both nostrils until they were bloody, so they gave up and put one in my mouth instead. A nurse appeared with hot towels and helped me get rid of some of the dried blood on my face.

A bit later my husband sneaked in, still in his scrubs from work. That seemed to remind them to get rid of me. They’d thought I was still tired from the anaesthetic but I think it was mostly just that I was napping because there was nothing else to do.

I had a quick look under the covers and things didn’t look too horrific. There was blood soaking through the dressing on my penis, which was taped pointing up towards my belly button, and a bit around the site of the suprapubic catheter. As expected there was also a catheter coming out of my penis. I was starting to get a bit of pain from the suprapubic catheter wound now, it felt a bit like muscle soreness from too much exercise. Click here for photos.

Once I’d been wheeled up to the urology ward I got a bed beside the window in a four-bed room. My clothes and valuables appeared along with some water and my husband came back just as dinner was being served.

Dinner was pancakes and pea soup. I let the soup go lukewarm and managed it OK but left the giant lump of cauliflower sitting in the bottom of the bowl. My cheek was a bit tender where they’d taken the graft but much less painful than I expected after reading other people’s experiences. Some aching in my groin too, my scrotum was looking pretty bruised and swollen.

I got some antibiotics, the nurse stabbed me in the leg with some blood-thinning drugs and I got a horrible nightgown to change into. I was even brought a little dish so that I could clean (half of) my teeth. At this point I realised that maybe bringing the toothbrush with the tongue scraper on the back hadn’t been such a good idea.

It was obviously time for bed so I settled down and tried to get some sleep, without much success. A little old lady arrived quite late in the night and was very noisy. Eventually she started continuously wailing and crying for help, as well as talking to someone who wasn’t there. When I called the nurse for her she said she was fine. After a couple of repetitions of this I called the nurse again and told her that I couldn’t sleep with all the noise, even with earplugs, and the little old lady was moved to another room.

I had trouble sleeping for more than short bursts because I could only lie on my back. My left side was out because of my cheek and if I lay on my right side my swollen scrotum was painful.

Urethrotomy

Summer holidays are a big thing here in Sweden. Most people take four weeks off in a block and that includes hospital staff. I had no chance of getting my urethrotomy done before the summer holiday period started and we’d already booked holidays for most of August.

So when I got back from vacation at the end of August there was a letter with an appointment for outpatient surgery in just over a week. Somewhat inconveniently it was going to be at a small hospital (that seems to exist largely for political reasons) about 60 km away, instead of the county’s main hospital that’s a 10 minute bus ride away.

I’d still had almost no information about the procedure, apart from some very generic instructions about not eating or drinking and washing with special disinfectant sponges before the operation.

On the day my husband drove me to the hospital and we sat and waited. I had a quick chat with the surgeon, a nurse and the anaesthetist and got changed into the lovely stockings and nightgown. Then I waited some more.

Eventually I was called into the operating theatre, got myself settled on the table, hooked up to various machines and drips and was discussing the Scottish independence referendum with the surgeon when the anaesthetic took effect.

I woke up in the recovery ward, feeling pretty OK but still a bit confused. My husband was allowed in and the surgeon came in to tell me that the operation had been a success. He said he’d had to cut away 5 cm of stricture, although it later turned out that he hadn’t bothered to record this anywhere.

Once I’d had a sandwich and some (horrible) coffee I was judged fit to go home. They’d put in a foley catheter during the surgery but I didn’t really get much in the way of instructions of supplies for looking after it. I was told to make an appointment with the nurse at my GP to have the catheter removed after a week.