Day 16/17 – thumbs up!

I have not had any significant changes and everyday things just seem to get better and better apart from some bladder spasms today. These have been few and far between throughout my recovery and tolerable when they have happened. A couple of paracetamol and plenty of water seems to calm things quickly. I will talk about my experiences with connecting the night bag to my leg bag as I have experienced some issues with this.

Before going to bed empty your leg bag but leave about 100ml of urine in there. It is important you connect the night bag to the leg bag with the valve closed then open it when its all connected up. The contents of your leg bag will empty into the night bag creating a good vacuum between the bags. Run the tube between your legs and hang the night bag on the frame of your bed. Twist the valve connector of the night bag to ensure the leg bag valve doesn’t twist on itself. It just takes a bit of trial and error!

– My testicles are back to a normal size

– I have still not looked at the incision site but the stitches have started to come out as I am finding dry scabs on the surgistrip dressing. I will ask my partner to look tonight.

– Erections still prove to be an issue with the catheter.

– I can sit down for much longer periods of time and without any support.

– It is going to be very difficult to avoid sexual urges for another 3 weeks after the catheter is out.

Day 15 – Urethrogram and disapointment

I woke up very anxious. I was trying not to be too hopeful as I knew if there were signs of a leak then I would have to retain the catheter for another two weeks. The drive to Addenbrooke’s is about a 50 minute journey for me and I tolerated this well. I will describe the procedure to you here as there were differences between what I have read on the internet of other peoples insights and what I experienced.

I got changed into a gown and was taken into the room. I laid on a bed with the X-ray machine over the top of me. This could be moved electronically to all sorts of different positions. I had to lay slightly on my side with my left leg straight and my right leg bent at the knee. The radiologist explained to me that I would be having a retrograde urethrogram and she would not be removing the catheter at all or making me void. This is because they do not want to interrupt the surgical site. They need to make sure its all healed properly before they interfere with the catheter.

She introduced a very small (no thicker than a rice noodle!) feeding tube alongside the catheter. About 2cm was put inside the meatus of my penis. This did not hurt at all. The dye was then injected through the feeding tube and images were taken. This was the most uncomfortable part as the pressure of the liquid being forced up my urethra and around the catheter almost made it fell like my penis was going to burst! Relaxing and counting really helped me through this. If you have ever had a retrograde urethrogram before you will know they usually use a balloon on the end of the catheter to hold it in place while they inject the dye. As I already had a catheter in place, the radiologist had to hold the feeding tube quite hard. She done this by kind of pinching the tip of my penis closed. This was quite uncomfortable but only lasted 15/20 seconds.

They got the images they needed and I was told there was no leak but my consultant will need to confirm this first before catheter removal. I had a look at the X-ray and was pleased to see no narrowed section in 17 years! My surgeon was in theatre so it did take time for her to look at the images. Unfortunately there was a very small pocket of tissue that was poking out. Although no leak was evident, she wanted the catheter to remain in place for one more week just to err on the side of caution and make sure everything is fully healed over the catheter. I do not need another urethrogram. I will just go to clinic next Monday for catheter removal and trial without catheter. Yes I was devastated, but I have a very caring consultant who is very reassuring and explains everything in a very clear and easy to understand way. I am very grateful to be under the care of Miss Biers and Dr Thiruchelvam. They are an absolute asset to the NHS. As I got to speak to Miss Biers on the phone I made sure to ask her when I could resume sexual activity. Six weeks after surgery was the answer. If I get desperate, four weeks but it could be painful at first and my seaman may be blood stained. She emphasised to try myself first before with my partner. I think I will try to wait it out until the six week mark!

Day 13/14 – the weekend!

I am now walking about much more confidently with the catheter. I have been shopping with my partner and can tolerate sitting without the donut with my weight shifted back. I have started thinking about the urethrogram on Monday and am getting myself quite worked up about this. I believe they will have me do a voiding urethrogram where they fill up my bladder and have me pee while they take images. This worries me as the last thing I want is for the catheter to be put back in if things are not healed. I had some traumatic experiences when I was younger so I am somewhat nervous about the whole procedure.

Testicles are still swollen at the bottom but the pain has pretty much gone. The incision site is beginning to get a little bit itchy at times and I continue to use a pad inside my boxers to protect the area. I am showering once every two days but washing with a sponge daily.

Day 9/10/11/12

Things have settled down. It is certainly much easier to sit down little and often. The catheter is more of a nuisance than painful. Swelling in the testicles has started to reduce. Erections are painful in the morning and don’t seem to be letting up!

Thought I would share some tips that have made my recovery more comfortable

– get some loose trousers with non elasticated bottoms. This makes it easier to move the leg bag in and out for emptying.

– When changing to the night bag, hook it all up first then open the tap to empty the contents of the leg bag into the night bag. This helps create a vacuum which keeps everything flowing well throughout the night.

– tight boxers with longer legs. Don’t use y fronts or really tight and short boxers. I found this just tugs on the catheter making it uncomfortable and painful.

– get a 2 litre bottle and fill it up with water. Make it your daily mission to drink the whole lot! It keeps urine a healthy colour and I believe has helped avoid excess blood/muscus travelling through the catheter. I have only experienced a few mild bladder spasms and I do think drinking plenty of water has helped avoid these.

Day 8 – good day, bad evening

Again had a great nights sleep. Erections are now becoming regular at night. I hate to think if this has an effect on the repaired stricture site?
Had my first shower today. Was the best feeling I’ve had all week and made sure to pat dry the incision site and then put a surgistrip pad on it to dry out. Putting woman’s pads in underwear is so much more comfortable as they stick in place so cannot move about when you sit down. I’ve gone back to y fronts today as the swelling on my penis has reduced so the catheter sticks straight down instead of out to the side. Y fronts are giving me much more support. Swelling in my testicles is finally going down and it’s easier to sit down/get up today. I have ditched the donut cushion after a week and have gone to a soft pillow, still ensuring I am sitting with my weight shifted back. Now counting down the days until my urethrogram (7 days to go!) but I am trying not to get my hopes up as I know things may not be healed and I will have to continue wearing a catheter.
The evening was difficult. Sitting become harder and harder to the point I had to go and lay down in bed at 8:30pm. The catheter hurts around the meatus of my penis and I have suffered from abdominal aching through the evening. Maybe it was because I did not take any pain medication today? I have also had this weird vibrating sensation inside but can’t quite pin point where it is coming from. It is either from the bottom of my testicles or inside the perineum. Anyway after lying down I saw some blood in the catheter tube. This freaked me out a bit as all week I have had healthy coloured urine. I’m putting it down to a bladder spasm. Will now up my intake of fluids to try and flush it through. I have found that wearing y fronts has actually been more uncomfortable throughout the day.

Day 7 – Dressing off

Slept very well. The idea of connecting the night bag to the leg bag first then draining the leg bag to create a vacuum worked well. It empties perfectly with the pipes in a straight line down to the bottom of the bed. Erections were terrible throughout the night and quite painful but am glad things are still working down there.
The district nurse came in the morning to check my wound. It was nice and dry and I was given the ok to have a shower. Was also a relief to get rid of the big surgical pad and changed for a smaller more comfortable one, however it easily moved about and I soon ditched that and used one of the thick woman’s pads I brought before my surgery and stuck this in my boxer shorts. Perineum is now a constant ache.

Day 6 – pain management and cath problems

Not a great nights sleep. Still haven’t figured the best way to wear the night bag. It seems to have drainage problems when attached to the leg bag as the leg bag folds itself up and twists itself. It really quite a poor design to be honest and I got quite frustrated knowing I still have over a week left of this and ended up disconnecting the thing and sleeping with my leg out of the bed so it could drain properly. That lasted about half an hour before I decided to have another go with the night bag. Another failed attempt so went downstairs to watch tv. Think I need to create a vacuum with it by emptying the contents of my leg bag into the night bag for it all to flow smoothly. I will try that tonight.

Have tried sitting without the donut cushion today and just sitting with my weight shifted back onto a cushion. This was much more comfortable but pain comes easily. Despite what I have read online, my surgeon said it’s not necessary to sit on a donut cushion although the patient information sheets states it may help.

Testicles are still very swollen. Penis swelling has reduced and now the tip of the catheter is often irritating. Pain has been the worst today. My perinium is a constant ache and the catheter is becoming a nuisance on my bladder. Pain decreased as the day went on. Just keep taking them paracetamol as and when you need them.

Changed my leg bag this evening as urine kept getting stuck in the tube and not flowing into the bag as well as it did before. That was eventful. The end is pushed on really tight so you have to be firm but careful not to tug on the catheter. Removing it caused air bubbles to flow back up the catheter. This was a very weird and uncomfortable sensation but things are flowing well again now despite having a feeling of fullness in my bladder. More paracetamol and I hope this goes away overnight.

Day 5

I had a great nights sleep and only woke twice in the morning due to erections.

Ok so the pain in my perineum has definitely increased. It feels tight like the wound has dried out. I only really notice it when i sit down. I have found sitting on the donut ring exactly like you would in a pool or going down a water slide is the best way. Minimal discomfort from the catheter. I continue to take my paracetamol, ibuprofen and most importantly the 2 weeks of antibiotics prescribed. I walk around the village twice a day to get plenty of fresh air and be up and about.

I would say at this point that I have found recovery relatively straight forward and can only say to myself why did i not get this done five years ago when first referred to Addenbrookes from West Suffolk hospital after my first urethrotomy. It really is a ‘mind over matter’ scenario.

The district nurse is coming on Sunday for a wound check. Im really hoping she says its ok to have a shower!

Points to remember if you are getting this done.

-Plenty of tight underwear (boxers, not briefs)

-donut cushion

– increase fibre intake

– non elasticated legs on jogging bottoms for ease of access to catheter bag

– baby wipes (the non perfume kind for ease of wiping after bowel movements)

– antiseptic hand gel (for washing hands when draining catheter and cleaning ends of catheter pipes when changing)

 

Day 4

I had a bad nights sleep. Wasn’t in pain, just lay awake for a long time. This morning I feel exhausted. Pain is minimal, like yesterday just a dull ache in the perinium and some slight discomfort from the catheter. Swelling in my testicles seems to be going down and I am getting used to how to strap the catheter so it causes minimal discomfort. Sometimes I don’t even feel like it’s there. As the day went on my pain decreased to a point where I had no pain at all. I did carry on taking paracetamol and ibuprofen but in more spaced out doses (every 6 hours instead of 4). Bran flakes and fruit has pretty much been my diet throughout the day as I am very conscious that constipation would be a horrible thing to endure with a catheter. Must keep them stools soft!
Think I’ve been sitting down for too long this evening. The pain in my perinium has increased so I decided laying down on the bed would be better.

Day 3 – Pain in the perinium

Slept really well last night in my own bed. The morning was a challenge. My partner is at work so I have to be as independent as possible. I honestly thought I would be in much more pain and less mobile than I am. I am already doing light chores around the house, getting myself washed and dressed although it does take time. The dressing fell out today when I changed my underwear. I am still unclear as to whether this needs changing or removing. It’s not gruesome, just a small amount of dry blood from the wound area and I will be calling my consultants secretary for further clarification. There is a constant dull ache now on that area and my testicles are also quite achey. Can’t stress enough how important tight underwear is to keep everything supported. Boxers are much more comfortable than briefs as the catheter and penis can be moved about to where it’s comfortable.
Had first bowel movements today. That was interesting and will be upping my fibre intake to make sure I don’t get constipated. I think the stitches are close to the anus so wiping was quite difficult. Took a slow walk around the village but my wound hurts more. Maybe my body telling me to take it easy! Been resting on the donut cushion trying to shift my weight onto my tail bone.
Went to the nurse at my GP practice in the afternoon to have the dressing changed. She said it all looked fine down there. I am noticibly tired tonight, as is my partner. The last two days have been long and now I’m home I can begin my countdown to being catheter free (hopefully!) in two weeks.