The blog about losing a bladder and having my first wee in seven years!

In life, there are a number of things we can all accept being lost or replaced. Most of us replace our phones every two years, we might update our technology, buy a new chair, perhaps a new car. Those are things that are easy to process and accept. As someone who has a complicated medical history, its not completely surprising when I have been told, ‘We have to remove a tumour, we are going to cut this out.’ It makes sense, whilst I don’t expect a shiny new replacement  I know my body will be a better place without it. However when I learned I was going to have my bladder not only removed but also replaced, well that did leave me slightly flummoxed.

I will rewind my story a little bit. Seven years ago, hours after finishing my final exam at university I became increasingly unwell. This culminated in a trip to hospital and many more trips followed all relating to urinary tract infections. By the end of the summer of 2012, I was left unable to urinate naturally at all. This in itself was a rather challenging thing aged 22 but there was nothing that could be done and I then had to learn how to self-catheterise, an unpleasant but necessary process, which soon became second nature and had been the case up until now.

When you have problems with your manhood, there are number of things urologists need to do. Unfortunately for me, the patient, most of those involve putting a camera up your penis to see what on earth is going on. I had been given lots of different medical terms but I learnt I had something called “keratinising squamous metaplasia” In short, I would be constantly monitored to see how things went. In December 2017, I had a scan and a few weeks later in my follow-up heard the news for the first time: at some point in the future, we may need to remove your bladder. It felt so alien, how is that even possible? Where would it all go? How would it work? Despite it being so broken and causing issues, the idea of losing my bladder felt very strange, invasive and personal. I was reassured it would not be for while, over the next 30 years I would have scans and at some point, when the time was right, it would be time to part ways.

The moment my girlfriend and I left the hospital, I did feel a bit of despair. Despite it being so far in the future, it felt so strange. We began Googling things, realising it was perhaps not as uncommon as first thought but mostly was related to bladder cancer patients. Whilst it was a long way in the future, it suddenly felt very real.

Time went by and one year later I had another cystoscopy (the unpleasant camera thing). I went back for a follow-up, Having no reason to think it would be anything other than a catch up and see you again in 12 months time when we can talk about it again.  However that was not the case.  It was suddenly apparent that my keratinising squamous metaplasia had become worse, using the term extensive, effectively making my bladder a ticking clock into becoming bladder cancer. One thing I learned quickly was it was in no rush to go off. This was a slow burner, but inevitably one day it would change. So I was left with a choice, something that was not forced upon me, about when should my bladder be removed.  “You could continue as you are now but effectively one day it will change and it’s up to you what to do.” I was suddenly in a position to voluntarily give up my bladder, something months before I had become quite precious over, despite our rocky relationship. I didn’t have to do anything, life could just carry on as normal - well as normal as it could be – and did I really need to put myself through something like that?

I had to look into what removing it would actually entail. I soon learned that because of my age (28) and relative state of health, I would be in a position to have something called a Neo-Bladder. They would remove my current bladder, but create a new one from my bowel. It felt very futuristic, especially when they mentioned a robot could perform the operation! There was no need to rush to a decision, there are a vast amount of issues that could come with it, and so it needed to be deliberated.

Except for me it didn’t feel like it did at all. I did not want to wait. I have enough medical problems, as it is, why risk it? Why leave something potentially harmful that could cause cancer?  I made the decision almost instantly and that was to say goodbye to my old bladder.

I still needed to get my head around that they were going to remove something, cut another part of me and mould that into a new thing? I still to this day am amazed by it. That alone is a story worth sharing, a story of how amazing the human body can really be.

This is not an operation they quickly just throw you into and job done. It needed good preparation and I am lucky the team at Guy’s Hospital in London did just that. They had an introduction day, when you meet surgeons, dieticians, nurses, and physios to discuss the road ahead. It was incredibly helpful, it really offers a chance to ask the strange questions about how it all works, from nurses who have been there and seen it before. As someone so young, it is easy to feel a bit alienated by it all but it’s in these moments you can feel safe and assured.

The strangest part for me is how they replace the bladder with the bowel. The obvious questions

arise, such as “It’s a bowel, how can it suddenly be a bladder”? Unfortunately I cannot give an in-depth analysis on that, I just know its possible. The thing that stood out for me, as a patient was how in the initial stages post-op, it would do the job of a bladder and a bowel. It would still create mucous, which would end up in my urine. It felt a little disgusting, would I suddenly have to urinate poo? It was another aspect of the operation that did leave me feeling uncomfortable. Half of me remained fascinated the other half was a bit disgusted. Nonetheless it could happen and the medical team all seemed very confident in the procedure. What it would mean is post surgery, I would need to flush out my catheter to ensure there was not a build up of mucous.

It was then time for the goodbye party. Would this mean the end of having UTIs? What state would I be in afterwards? Due to my age, the talk was mostly positive of everything going back to normal. There were natural niggling thoughts in my head, what if my penis doesn’t work anymore??? Fortunately those fears were put aside ahead of the mammoth operation.

The operation took place in January 2019; it took nine hours and was not performed by a robot but a number of top urologists. In fact, in the subsequent weeks post-surgery I began to wonder quite how many actually took part? I knew it was a rare operation but it seemed like everyone in the urology department must have had an invite to the hottest ticket in town. I kept on meeting people who were there, who watched or were part of the procedure, I had become a urology celebrity. I wish I could tell you more about it but as I was in a vast and deep state of sleep I cannot dissect any more details.

What made the next phase so useful was the help given in the introduction day. I was taken onto a critical care ward then subsequently a urology ward a few days later. The intermittent tests and investigations in-between that time had all been explained. There was nothing that fazed me luckily, which goes to show the importance of being informed and the pre-operation care.

Overall I was in hospital eleven days. On reflection, it seems a distant memory but for anyone who has had long stays in hospital they can be rather tiresome. I had a number of tubes, here, there any everywhere. Different people would float to your bedside everyday, wanting to know different thing. My wellbeing always felt top priority though and it was only eleven days later that I was able to leave, with only my catheter attached, as my new bladder settled in.

Two weeks later I returned to the hospital for the moment of truth. The moment my catheter would finally be removed and I would see if, after seven years, I could pee naturally again. The catheter was removed for the first time in over a month leaving me free of any tubes and attachments. I was aware thing were suddenly not going to go back to how they were before, I would not get a sensation like most people, it would be a decision when to go. I would have to sit down, tense my muscles and almost have to push it out. My days of using a disposable catheter not being completely over, as I would still not to use one to make sure nothing remained.  The moment of truth arrived and …. nothing happened.  Whilst this had been explained as a possibility it was a bit of a let down. The doctor told me to go home, keep on self-catheterising and monitor the situation. It was only later that evening that the moment of elation came.

I don’t believe anyone has ever celebrated a wee as much as I did that evening. I was sat down, tensing, hoping for something when it started flowing. My first natural wee in seven years! It felt like witchcraft, how was this possible? There were cheers and possibly a few tears as well. I truly never believed this day would come.

The operation only happened two months ago but things will soon return to normal, in no time at all. A problem which has been on going for so long has now been resolved and I am in awe of the innovative and smart thinking of modern medicine and how it is possible to make this happen. Things feel exactly the same, I have added another impressive scar to my collection but apart from that there is no need to feel different, I am confident and can only hope this will put an end to the constant stream of issues I had had before all this happened. I will carry on with work, and having a happy life with my girlfriend.  None of the issues that could have affected us have done and so we can still look ahead to our future as planned and that is all down to the great work done by the medical team and by being decisive and removing it whilst it was still benign. A tough decision but on reflection the right one for me going forward.