Three weeks ago, I headed into what would be one of the biggest plunges in my life.
Little did I know just how much could change during my time in hospital.
I arrived on the first day (20th June) at around 6:49am. 11 minutes before the letter advised. Why, I hear you asking; because I have been preparing myself for this moment for the last 4 and a bit years.
Even with the knowledge I had accrued during the build up to the surgery, you still don’t know what to expect after, so I’m going to write about my experience in the hope that someone out there will read this before they head in for their operation, and have a better understanding from the other side.
This article will be honest and somewhat brutal, so brace yourself.
Day 0 – At this point my nerves hadn’t really kicked in. Whether that was due to being tired still or having loved ones around me. But staying calm helped me a lot to get as far as the operating theatre. If anyone ever tells you that you need to be mentally strong to get through this procedure, they are not joking. You need to have balls of steel (sorry ladies). It’s alright to have worries, but do your best to get them out of your head as soon as possible.
My operation took 8 hours to complete with a further 3 hours in recovery. I had woken up as if I had no clue where I was, and in a lot of pain. Searing pain you could say. It’s normal to have pain at this point, but it should be under control. Unfortunately for me, I had a high tolerance to morphine and this was just what was being pumped into me, with no effect.
From the time I awoke, I remember everything. Not something you want to remember to be honest. But I remember thinking that the operation had not gone ahead because it felt like no time had passed. To prove myself wrong, I lifted the top of my gown and looked down. My heart sank a little as I didn’t know what to expect, but it was there, the operation had been completed.
For a brief moment I remained in recovery (or what felt brief), before being moved to the ward. This point is the photo at the top of the post (sorry for the quality, it was dark).
I’m still in searing pain and still being pumped with morphine, but my parents and partner come through to see me. I remember talking to them through gritted teeth and a very dry mouth. Not the nicest of feelings.
The pain team are summoned to change my pain relief but do not appear throughout the night, so I go on as best as I can.
Day 1 – I’m now a day behind due to the pain, but thankfully the surgeon makes it very clear to the pain team that they are to sort the problem immediately. To which they arrive in no time at all and get to work on suggesting something stronger.
They start pumping it into me, or more so I’m pressing a button that allows it to enter my system when I need it. During the initial few hours, this was every 5 minutes without fail.
It was working, or at least it was for now, we’ll address that in a moment.
I’m checked by the surgical team and everything seems to be in order. The surgery was confirmed as a full success and that they will keep an eye on me in the coming days.
Later that day, the pain breaks through the barrier and I am again in agony. Writhing around the bed like something is going to pop out of me, like a scene from Alien.
I’m also starting to feel sick but I keep pressing the button in the hope that it will subdue the pain.
Day 2 – The day continues, still suffering. At this point I haven’t slept since I awoke from the operation.
Again, the pain team are called, and this time they arrive with no delay. Put to work to decide on a more effective pain relief. Finally they come to a conclusion and I am given the new pain relief. This time it works and I don’t feel sick.
The remainder of the day fizzles by much more swimmingly although I am still extremely drained and am still a day behind.
During the night, I had a bit of a breakdown and decided that I needed to sit up in order to shift something from me. What it was that I felt needed shifting, I had no idea.
The nurses were very kind and helped me with getting up onto the edge of my bed. Unfortunately I instantly felt like I was going to be sick. Good, although I didn’t want to wretch in the condition I was at the time.
Here it comes, I can feel it. But wait, I haven’t eaten anything, so how can I be sick? Unless it’s just water. I begin to brace, when out comes a very loud burp.
Little did I know, that I was pumped with quite a lot of air during the surgery and this was what was causing me discomfort.
The burping continues and I start to feel some normality returning. This carries on for a fair few minutes, before I request help to lay back down in the bed. Finally, I felt I had accomplished something.
Day 3 – I’m starting to feel more normal by now. The pain is subsiding a bit (with the help of meds) and positivity is returning. Or at least it felt like it.
I’m booked in for a chest x-ray, as I’m still struggling with my breathing. I had been attempting to keep up with the breathing exercises I had been set, but without the aid of oxygen, I wasn’t performing them to the best of my ability.
I’m taken in the bed and the x-ray is completed. There’s nothing obvious, so I aim to keep at the breathing exercises.
On top of this, I make a request for my catheter to be removed and, my wish is granted. For anyone who has had one before, you’ll know the feeling. It’s a cross between absolute burning agony and wanting to pull your penis off, and the feeling of absolute accomplishment. For the initial pain, it was worth it.
Later in the day, I am approached by the nursing team and asked if I would mind moving into a side ward. Naturally I agree to it. I hadn’t slept for longer than an hour at a time while out on the ward, so having a room of my own would be amazing.
The move takes place and I settle in. The room has a tv, brilliant. Also, it has a window with a view. Alright, it’s a view of houses and part of the multistory, but it’s a view nonetheless.
The physio team enter the side ward and ask me if I’d like to get up. Part of me doesn’t, but an even bigger part of me does.
They get me up and my pikachu slippers are applied to my feet. I’m doing this. With their help and holding the remaining two drains, I get up. Initially a little wobbly, but with one of them either side, I start shuffling towards the door.
I don’t want to stop just there so I ask to go to the end of the hall. There is a window open and I want to breathe in the air from outside. The shuffling continues as I make it to the end of the hall, I’m unstoppable. I try to breathe in the air, but it doesn’t feel like it has entered my lungs. Shame.
I turn around and start to shuffle back. Making my way to the bed and helped back in. That was so much better.
My request I had made earlier for the remaining drains to be removed was granted. They firstly roll me onto my side so that the drain from my bottom can be removed. However it is still inflated inside me. Possibly the cause of some of my discomfort.
They begin to deflate the device and tell me to take a deep breathe. As I am exhaling, they pull it out. As with the catheter, there is a brief period of pain, but it felt amazing to be out.
I’m rolled onto my back and they begin opening the stitches for the drain just below my belly button. I’m told that this procedure is most likely going to be very painful. How far in could it be to cause that much pain, I thought to myself.
We begin some breathing exercises and then start to pull on the tube. Unlike the other two, this pain was unbearable and every time they tugged, it seared with agonising rage.
They continue to pull, until eventually it’s out. I hear my partner commenting on how long the tube was, so out of curiosity I look down. It must have been in at least 12 inches (that’s one Subway Sandwich).
Glad that it was over, I rested for a few hours before having the urge to try walking again, now I felt a bit more free.
My wonderful partner helped me out of bed and we waddled along the hall once again. Still unable to breathe in the air from outside.
I asked her if we could go down to the entrance and sit outside. So off she goes to get me a wheelchair from the main entrance and brings it back to the room. I’m helped into the chair and we begin our mini adventure. Already I am excited and anxious to get out.
We reach the front entrance and I can feel the breeze coming through the door. We exit and instantly I feel this wave of relief wash over me. It was amazing.
We only spent about ten minutes outside, but to me it felt like an eternity. In a good way of course.
The rest of the evening went by much more smoothly. I remember watching the new Crystal Maze with Richard Ayoade, he doesn’t fit the show, but he’s awesome so I’ll leave it.
I slept so well being in a room by myself and the next morning I felt more alive. Let’s move onto day 4.
Day 4 – As I said above, I awoke feeling much more positive and decided to take a big step and get up out of bed myself. It was a struggle to begin with but I got the hang of it and was patient enough to try.
Eventually I manage to bring myself upright on the edge of the bed and start to ascend. I’m upright and feeling good. So, I start to walk very slowly towards the window in my room. Slowly, but getting there nonetheless.
I repeat the process, going back and forth between the bed and window and then between the window and the chair on the other side of the room.
This continues for the best part of an hour until my partner arrives and we go for a walk together down to the cafeteria, where I managed to eat some chips. I had been craving them with salt and I was not disappointed.
We head back up and watch a bit of TV. My surgeon pops in to check on me (he’s lovely! Also checks on me every day, including Sunday!), and I have a little nap.
Later that day, I’m asked if I mind moving back to the ward. I kindly accept and am taken along to a different bay. It’s quieter and I’m already sighing with relief.
Once again, I settle in and play on my Nintendo Switch for a few hours to kill time until dinner.
Day 5 – I slept well, everyone on the ward was quiet throughout the night so that was good for me. Selfish, I know, but you realise how much sleep actually aids in the process.
Today is Sunday, a day of rest. I’m up and about, emptying my bag by myself. I’ve got into a routine of doing it and think I have it sorted, however I haven’t be properly shown how to change it just yet. However I want to learn how to and have seen a couple of the nurses changing my bag when I was recovering.
I head over to YouTube and watch some videos of it being done, and give it a go myself. It’s hard to begin with and I messed up with the first bag, but I removed it and tried again. This time it seems to be successful.
The rest of the day practically zooms by with nothing much happening. The surgeon pops in to check on me and my partner and I go for a walk down to the Cafeteria and Hospital shop. It’s feeling so good to be up and about walking, albeit a bit on the slow side. After eating some yummy food, we played Super Mario Kart on the Nintendo Switch, with the steering wheels. Passed the time before dinner again.
The pain is beginning to subside a little more on the current meds and although I’m continuing with them, it doesn’t feel that I will need them for much longer. Which is a shock for me, as I have pretty much lived on Class A prescription drugs the entire 4 years.
Day 6 – Again, I have a fantastic sleep and am feeling as normal as I think I’ll feel while in hospital.
The Surgeon and his team of 5 come to see me. The curtain is closed and we have a chat. I’m eager to go home at this point, but we’ve still not signed off from the Stoma Care Team with regards to me changing the bag by myself, but he is happy that if they do, I can go home.
Before they head off, they all take a point on my body and check it over. One scar needs to be dressed as it’s weeping a little bit – this is just due to being below the bag and it rubbing. The rest look alright and he’s happy with it all. I kind of felt like an F1 car coming into the pit stop, was a little bit funny in my head. I thank them all for their help, especially my surgeon and they open the curtain to leave.
Not too long after, the Stoma Care Nurse visits. I’d only changed my bag the day before, but the terms for me leaving hospital were that I change it in front of them so they can say whether they are happy with the change.
We begin the process. I’m told that the initial weeks after surgery will always be a slow change, as I’m still getting used to it, and to not worry about output when changing.
I remove the bag with the spray, and pop it into the bag provided. I very carefully wipe around the stoma, ensuring that it’s as clean as possible. I then clean the area surrounding it, where the bag has stuck to the skin. Once it’s clean, I make sure that the entire area, including the stoma, is dry, and use a stoma guard wipe to apply a layer for the bag to stick to.
I’ve already cut the bag to size and apply it. At first I’m a bit unsure, so I carefully remove the tiny bit that has stuck to my skin and apply it again. This time I get it and the nurse is happy with the results.
The next hour or so, we talk about the processes, how I’m doing and the plan moving forward. Luckily, I managed to acquire an appointment with them later in the week to have my stitches removed. Even though they will dissolve in time, I’m told it will feel much nicer when they are removed manually.
Off they go, and a nurse heads in to see me shortly after. The Stoma Care Team have given the go ahead and I’m off home. I’d need to first wait in the Discharge Lounge, and await medications and other bits before I could be picked up, but either way I couldn’t be happier to be going. The thought of recovering at home in a comfortable bed was bliss.
The whole ordeal happened 3 weeks ago, but I am only just recovering to a point where I have been able to write about it, and in a way I’m glad I have as others will be able to read about my experience prior to their participation in the future.
I’m on the road to recovery, with another 2 operations ahead of me. Both of which, I will also write about – maybe a bit sooner than this one has been.
I’m also going to take this moment to thank my friends and family for everything they have done. From the little gestures up to the big ones. Each one has helped me in their own way.
I also could not have done this without the help of my wonderful partner. She is amazing, strong and stood by me every step of the way, literally. Without her, I would have without a doubt, likely been a lot worse than I had been. She was my voice when I couldn’t be heard. So, thank you Lynsey. I owe you, more than you could imagine. I will make it up to you one day, I promise!
I’ll be posting more updates over the coming weeks, so be sure to have a read when you can, and as always – tweet me if you would like to talk about anything, or if you are about to go through the process yourself and want some questions answered.