A Successful Surgery and Everything After

What a month.

There is so much to get through, and I honestly don’t know how to start. As of right now, it has been several weeks since my operation, and it feels like it has been months already. Simultaneously, it feels like it has only been a few days. The days and weeks (especially when I was in hospital), managed to merge into one another in such a way that it has become difficult to tell what happened and when. I’ll do my best.

This blog is a long one. Best to get yourself some snacks and a cuppa before we start.

The surgery I had was a major abdominal operation. I have written about it in previous blogs briefly, but the quick rundown is that; I have Crohn’s Disease. My Crohn’s has been affecting one spot in my bowels/intestines in particular and over the past few months, it has slowly been becoming dangerous. The part of my bowels where my small and large intestines meet had been shrinking, with them well on their way to closing completely if no action was taken, which is pretty dangerous. So, the operation was to take that bit out, and restitch it up, past the points that had been affected (I think the operation was called an ileocecectomy or an Ileocecal resection).

I had my pre-op assessment and even an iron infusion done at the very beginning of February, and I was admitted into hospital a mere week later. Before I even set foot into the hospital on the 8th, it was already starting to feel like too much. I was so scared. Despite how scared I was, I didn’t have much time to dwell on it. As soon as I set foot onto the ward, I was surrounded by nurses and doctors and anaesthesiologists, all cramming to get my vitals, confirm details, and get me into more appropriate surgery-wear. It was extremely hectic, very quickly.

I was told repeatedly what the risks to the surgery were, which is fair enough; but after hearing them repeatedly over the course of a couple of hours, I started to fret. What definitely didn’t help my worrying was the two small X’s that were drawn onto my abdomen in case my surgery went wrong, and an emergency stoma had to be put in place instead.

The anaesthesiologist informed me that I would be getting a general anaesthetic (that would send me off to sleep), and a local one (which would numb the lower half of my body). This local one, he informed me, would be injected into my spine. While I’m still awake. Yeah, I’m not the greatest fan of needles and he made the mistake of letting me see how big that needle was. I did not like it. Happy to say I did it, though admittedly I only succeeded because of a lovely nurse that held my hand the entire time.

I was wheeled off to surgery at roughly 2pm. I was so scared, I was shaking. The nurses and anaesthesiologist hooked me up to a bunch of machines, took my vitals a bunch more times, did the dreaded local anaesthetic, and then laid me down and sent me off to sleep.

I woke up several hours later in recovery. I will never get used to the feeling of trying to wake up from anaesthetic. Your brain knows you should be awake but your body literally fights against you. Nevertheless, I was told that the surgery was a success, and that even though I threw up (which I don’t remember), everything went well and I only had to heal now. I wasn’t fully conscious when they told me this but I do seem to remember feeling quite relieved.

Oh gosh the pain. Now, I know that logically, going through a major abdominal operation was bound to hurt. My stomach was cut open and my insides rearranged until they worked again, only to then be stitched back up. I was expecting pain. The more I woke up, however, the more the pain was overwhelming. I could hardly move.

I was in PACU (Post Anaesthesia Care Unit), for roughly a day. I felt sick, but thought that it was just because of how much pain I was in. I was put onto a morphine drip, a paracetamol drip and had anti-sickness medications pumping through my veins regularly. I threw up once or twice while I was in PACU, but I admittedly don’t remember much besides being tired, feeling sick and being in pain.

I was eventually moved to a proper ward. I was deemed a priority so I was given my own room, which was a blessing at first but proved to be quite lonely as time went on.

I was slowly starting to do well, though. A day or two in the new ward and I had managed to eat half a tub of jelly and was drinking normally. They took me off of the morphine drip after a day or so (they swapped me over to a paracetamol drip), and other than the pain, I was starting to feel pretty decent. I had a couple of days of progress, even though I had a constant feeling of nausea that refused to go away. My Mum and younger brother (Jacob/Jake) came to visit me, handing me loads of snacks and food that could help me get my strength and appetite back (I have a lot of food restrictions that made my hospital stay tricky but I’ll get more onto that later).

Everything from then went sharply downhill, literally overnight. I was sick repeatedly, I felt dizzy and kept blacking out every time I tried to do anything that involved me being out of bed. I was painfully bloated, I fainted a couple of times after trying to move without help, and I wasn’t going to the toilet at all (which as embarrassing as it is to talk about, it’s a vital part of my surgery recovery). I couldn’t eat or drink as it just made me sick immediately, and I couldn’t move due to the pain and how weak I felt. I feel like the way I’m describing this isn’t giving much view into how scary it was, and how ill I truly was.

At first, doctors thought that my surgery had gone wrong, and that there was a leakage where my bowels had been sewn back up. They said that if this was the case, an infection would be likely and that that could be why I was feeling so weak and being sick. They put me on antibiotics, and started treating me for sepsis, while they organised a bunch of other tests to figure out what was really going wrong.

A doctor suggested that they insert something in my nose and down to my stomach that would suck up all the bile that was making me throw up, before it had the chance to. I reluctantly agreed after he told me that there was no way he could put me to sleep beforehand. He kept hitting bone as he tried to force the long pipe in my nose, and after several very painful attempts, failed. I cried and told him to stop.

I told him that since they didn’t actually know what was wrong yet and it was only advised so far, rather than required (in the medical sense of “there’s no other option, this is how we fix this”), I didn’t want to try again. He didn’t seem to be particularly happy with that answer but given the amount of pain he put me through and how heavily I cried, I didn’t really mind. Don’t get me wrong, he was a lovely guy and a great doctor; but ouch.

Soon after, I was carted off for a CT scan. I was in so much pain and felt incredibly weak throughout all of this and all I wanted to do was sleep. Little did I know, this night was the beginning of a string of sleepless nights.

The CT scan itself was painful. Well, the process of it anyway. I was wheeled to the scanning room, and then I was transferred from my bed onto the CT scanning bed. I then had to hold my arms above my head while the scanner did its thing, which because I was stretching my stomach, hurt a lot and I was close to tears again. On the bright side, I had met the technician before, so we had a little chat about robots before I left. Still hurt massively though.

After a few hours and when I was settled in my room (still unable to go to sleep ’cause I was being woken up every half an hour by medications needing to be injected into me, and machines beeping annoyingly), the same doctor that had tried to put the tube up my nose earlier made an appearance and told me that the site of my operation wasn’t the issue. Instead, my stomach had stopped working.

So apparently, when you’re opened up and your digestive system is messed around with for a few hours, it can send your stomach into shock and it “forgets” to keep working. They also said that it was incredibly common. I suppose if I had to work for nearly 23 years without stopping, I’d want a break too. Sarcasm aside, I was really glad that nothing had gone wrong with my surgery. A little upset that they hadn’t spotted the really common cause first, but hey.

My happiness was short lived however when he told me that that the only way to “get my stomach working again”, was that dreaded tube in my nose, so it could get all the bile out of my stomach. I was not amused, but let him have another go. I had already been there for five days and was more than ready to go home, and logically (even though I didn’t like it), I knew this was the fastest way.

He failed again and after a few mild swear words (by me, not him), he decided to go and find someone else to do it, claiming that they’ll have a much easier time navigating my nose than him. In the time he was gone, I managed to get a couple of hours sleep. At around midnight, two different doctors came in to have a go.

The one that succeeded was actually very funny, and he managed to cheer me up quite a bit, despite me never being able to forgive him for succeeding in the first place. I threw up on him a little bit though, so I suppose we’re even.

I hated it. It hurt getting it in, and once it was, I could feel it at the back of my throat. Constantly. I had to hold the tube in a very specific position, and if I moved the tube even slightly in any direction, I would gag violently, which hurt my stomach like crazy (fresh wounds = ouch). I didn’t get any more sleep while it was in due to the stupid position I had to keep my arm. I was told that if everything went well, I would only need it in for 24 hours.

At around 4-5am, I was given an x-ray because the doctors had noticed that it wasn’t draining properly. They saw that it had folded back on itself once it had reached my stomach and wasn’t working as it should. They pulled a small amount out, which seemed to work. Only now, the pipe had moved and the risk of gagging and throwing up was much, much worse.

The following 24 hours were torture, but as much as I hate to admit it, it worked. Impressively quickly, too. The next day rolled around and I was feeling more hungry rather than bloated, and I had been to the toilet several times in the night. All great signs that the tube was working. By the time the day ended, there were several doctors that raised concern with how little the tube was sucking out of my stomach. Looking back, I realise that my body had starting to work normally much sooner than I’d realised.

That night, I was desperate for some sleep. I hadn’t slept properly at all; out of the six days it’d been already, I could only account for a few hours maximum. I tried to find a comfortable position to sleep in, only to give up once the pipe made me gag so violently that it made me throw up for the first time in 24 hours. It was another long sleepless night.

The following morning, the tube was taken out and I was given the green light to start drinking again. While I was disappointed that I wasn’t allowed to eat yet, I was so thirsty and dehydrated that I honestly didn’t care. I was told that they just needed to make sure that I was digesting things properly and it was safer to do that with liquids and ease my stomach back into, ‘you know’, its job.

By this time, I was feeling very lonely and overwhelmed by everything. I hadn’t given myself enough time before my operation to truly understand what I was going through. I just got on with it, and pushed all of the emotions and fears I had to one side, since they didn’t matter at that time. My physical health was the priority, and I knew that if I let the reality of my situation sink in beforehand, I probably would have backed out.

I’m also autistic, which I don’t talk about a lot and have most likely never mentioned to anyone outside my close family circle (this seems like a pattern at this point). Being in the hospital was very overwhelming, and I’m struggling to find the words to convey it. Between all of the repetitive beeps and unfamiliar noises I couldn’t get rid of, smells and sensations I wasn’t familiar with, and a brand new nurse every 12 hours, it was very easy to feel taken over by the waves of emotions I’d stalled on addressing for weeks. I was an emotional wreck for weeks after I came home.

Side note: small talk sucks and I had to do way too much of it while I was in hospital. I would be very happy if nobody even acknowledged the weather ever again. I don’t understand small talk and I try to avoid it generally, preferring to get to the point. Remarkable given the length of this blog post.

That day though, regardless of my frustration, was the day that I slowly started improving. I was eager to get home so I made an effort to get up and walk myself to the bathroom, and even though I needed help to get there and back; I did it. I was drinking and going to the bathroom as normally as could be expected, and I even managed to do some reading (which was a big deal to me, since I had been too ill to do anything at all; much less spare energy to read).

I slept properly (and heavily), for the first time that night, and the next day I was allowed to start eating. I was restricted to a soft diet so my digestive system didn’t have too much work to do. I had “scrambled eggs” (it was an omelette really), and even though it was seriously lacking some salt, it was the best thing I’d ever tasted. I nearly cried. It was glorious. I took it slow but I ate it all and kept it down without struggle.

I have explained in previous blogs that my Crohn’s doesn’t react well to certain foods, so I’ve had to cut them out of my diet. Some of these food groups are; dairy, nuts, and high fibre foods (which includes most fruit and veg). This made trying to find what I could eat in hospital (with its already limited options), very hard. Side note, did you know my Mum was once denied toast in hospital, which is now a standing joke at home. Plus, if we cycle back to autism for a second, I have a lot of sensory issues with food, which adds an extra layer of difficulty.

I was then told that because I was eating successfully and keeping it down, I was to be moved to a ward. This got mixed feelings. On the one hand, I was happy that they were seeing me as less of a priority. On the other hand though, COVID is still a problem, and in my household it could be a huge issue if one of us catches it. Mum and I have suppressed immune systems as a result of medications we take, but with her extremely limited lung capacity, it could kill her. So, I was hyper aware of that, and requested my curtains remain closed at all times.

The day that followed was pretty standard. I got medications pumped into my arm to stop the pain, had something to eat, read and listened to music, got checked on by doctors, ate some more, then slept heavily. I asked doctors every time I saw them when I could go home.

Day two on the ward, I asked the doctor (that came in daily to check on my progress), when I could go home. She told me that I ,”..could go home today or tomorrow.” It all depended on how the daily blood tests came out. I was thrilled. I’d been in hospital for a week and a bit, when I’d only expected it to be five days. I’d been through so much in such a small amount of time that I haven’t even included everything that happened that week in this blog, otherwise it’d definitely be too long. I was more than ready to leave.

Bloods must have looked good because the doctor came back in a while later and told me that I could go home that day if I was ready. I assured her I was, and rang Mum immediately. She was asleep, and I’d woken her with my call. She panicked initially (as is her nature), but after I assured her I was okay and told her that I could come home, she was equally as excited as I was. We’re a very tight knit trio, so spending extended periods of time without each other is a very weird feeling.

I told Mum that she had a few hours to wake up since I was still waiting for my medication (some Clexane injections and a couple of boxes of tablets), from the pharmacy. I immediately got changed out of my hospital gown and into proper clothes, and packed all of my stuff up as fast as I was physically able to.

I asked a nurse if she could get me a wheelchair as I didn’t feel able to walk from the ward to the front doors of the hospital, and asked if she could come with me as I was told I wasn’t able to lift anything too heavy for a while (since I was at risk of having a hernia), and the bag I had brought was definitely too heavy for me. She agreed and went to get my medication.

Several hours went by and I was starting to get frustrated. A wheelchair had been placed at the end of my bed, ready and waiting for when I had my medication; which was still nowhere to be found, despite me asking the nurse repeatedly where it was. I’m fully aware that I was probably just being over-demanding and impatient (especially since nurses are over-worked and underpaid), but she genuinely took ages. My medication was only sorted after I went to find another nurse to check for me.

With that, I was all set to go home. Nursie wheeled me to the front door, carrying my very heavy bag on her back, and my medications on my lap. I was so homesick, and the anticipation of seeing my family again was almost too much. That sentence sounds so dramatic, but alas, it is true.

Jake came in the front door (walked straight past me, which was funny), a few minutes after I’d arrived there with the nurse, and happily grabbed my bag, and my arm, and walked me out to freedom. I was so happy to see him and for about the millionth time that week, I was close to tears. I got in the car and I felt like I’d exploded. I cried so heavily (which hurt), and though I was in the back, Mum and Jake comforted me as best they could while I let all of my pent up frustration out.

We went to get me some proper food, and then went home. Finally.

The following week or so was a blur. I was almost entirely bed-bound, only able to muster up the energy to go to the toilet and do a few menial things. I was exhausted, and I slept a lot. Slowly, I managed to get my appetite back, and even slower, my energy.

The pain was immeasurable, and still hasn’t gone away fully. I had to be helped every time I wanted to move (Jacob was ace), however small that was. There were times where I’d forget about the pain, and moved too suddenly, only to be faced with a brick wall of agony falling on me. All of my muscles and bones hurt from having not moved or had any exercise for weeks. I felt weak and completely useless, upset that I didn’t have any energy for anything but sleep and gaming, and I was desperate to get back to my family and my projects (art/robots/video etc). For weeks I was utterly dependent on my walking stick (depending on the day I still am, but it’s far less now).

Jacob was a little powerhouse, with him taking over my caring duties a bit while I rested. He got me drinks and helped me anytime I asked. He sat and talked to me, keeping me company when I had the energy to not be asleep. While I was in the hospital, all three of us talked on video calls daily, and he was always tying to cheer me up. He helped with carrying stuff (mum can’t), and he kept most of the house as clean as he could.

My Mum has always been my rock and this whole experience was no different. She struggled with me being stuck in hospital for as long as I was. The day when my health declined rapidly, they were both actually on a video call with me; watching as I threw up repeatedly, with barely enough energy to reply to them properly or stay awake, and she was completely unable to do anything about it (which she describes as hell). She injected me with my Clexane injections everyday for 20 days straight (phobia of needles I have), and sat with me for hours as I whinged about how much pain I was in, and cried about how much I wanted it all to stop. She is, and always will be, my hero. I would have seriously struggled without her by my side the whole time.

The amount of feelings I experienced throughout this whole saga, was insane. I’m not sure if I can put a name to all of them.

Surgery was inevitable. I remember being diagnosed back in Oct ’21 and being told that they found a major site in my intestines that was heavily affected by Crohn’s that they’d have to keep an eye on. I remember being worried but pushing it to the back of my mind, since they said it wasn’t an issue at that time. I have been immunosuppressed since.

That being said, the entire experience was awful. From being trapped in hospital for longer than I’d expected, to the lack of sleep and food for nearly a week straight, to feeling too weak to do anything and fainting anytime I tried to do anything, to missing my family so much I cried. I felt lonely, embarrassed, overwhelmed and tired with everything that was going on. Everything had come on so fast, and looking back, I wasn’t ready for any of it. I don’t think any of us were.

I know it was inevitable. I know that if I hadn’t had the surgery when I did, as much as I’ve struggled these past few weeks, I would have been in a much worse place.

The biggest thing I struggled with after surgery though, was how alien my body felt to me. It felt like I was only a passenger in a ship I was completely unfamiliar with. That feeling was bad when I was in hospital but got worse when I went home. I had to relearn all of my own boundaries, in an effort to rebuild myself. My body didn’t feel like it was mine at all. I’m getting better now bit it’s definitely a side effect I didn’t expect.

As for my scar, most days I hate it. It looks a lot better now than it did a few weeks ago (see gallery below). I’m trying to build up a good relationship with it, and I’ve made a lot of progress with that since being out of hospital. It’s especially important since the reason it’s there has basically saved my life. If I’m being honest though, while I’m making jokes about how “..epic I look with a badass scar”, I only believe that slightly.

I have a lot of confidence to build back up.

Reading through this blog feels hectic. It feels fast paced and chaotic, like a terrible story that hasn’t been thought through properly; too fast with too many differing plot points. Unfortunately for the person reading this though, that is exactly what the actual experience felt like. It felt too quick. It felt like I was being knocked down by random, invisible foes, and before I had the chance to get over it properly, I was already being hit with the next quest.

My Crohn’s Disease is always going to be an issue, and I highly doubt that this’ll be my last blog on the subject. Hopefully though, because of that surgery and hospital stay that I hated every second of, I might not have to write about it for a long time.

Time for adventures of a different kind (carefully, of course).

Cerys, out!