Ileostomy Surgery, Part 2: My Struggle with Pain Relief.

October 27^th was without a doubt one of the hardest days for me, not just of my hospital stay and my surgical journey, but of my whole life. It was only the third day since my surgery, and it didn’t get off to a good start. That’s because when the lunch service started, my new nurse turned up in my room and tried to make me eat a leafy salad that I’d supposedly ordered… even though I was still only on tiny sips of water and no food. I tried to explain to her that the salad clearly wasn’t mine, but she retorted by telling me that I must have ordered it, it was on the lunch chart. When I told her that I had just had stoma surgery she stared at me blankly, so I then explained that people with stomas are generally told to avoid leafy greens as it may give them a blockage. She still looked confused. To put it bluntly, I told her that I couldn’t eat that salad 2 months from now, let alone 2 days after stoma surgery. She finally left my room and I thought this conversation was over, until she came back 10 minutes later saying: “You really should eat something dear”. There’s just no getting through to some people.

After that incident had eventually subsided, the same nurse decided that she wanted to re-do my cannula and move it to the other arm, and with it my epidural machine which was plugged into the mains. But because I was only on small sips of water, it wasn’t going to be easy to cannulate me. What happened next still gives me the shivers. It was without question the most painful and one of the most traumatic experience I’ve ever had. I didn’t realise at first, but the nurse had turned off my epidural ready to swap it to the other side of the bed BEFORE starting to try and cannulate me. She then couldn’t find a vein, forgot that she’d switched off the machine and left to look for someone else to help fit my new cannula. 20 minutes in and I started to feel a growing pressure both around my abdomen and my rear end. I thought maybe it was just a temporary blip. Soon my parents arrived and immediately my (thankfully) nosey Dad noticed that the machine didn’t have any lights on it. I immediately started to panic.

I frantically pressed the call button, but no one was coming. By this point for every 2 minutes that went by my pain got 5 times worse. By 52 minutes I was in absolute agony. And I don’t use the word agony lightly. I don’t think it would be an exaggeration to say that I felt as though I was being burned alive… whilst giving birth… to quintuplets… without any pain relief. In other words, I may as well have been having my extensive open surgery without any anaesthetic. I am not usually an emotional person, one who likes to make a fuss, or one who wants to be the centre of attention, but I ended up screaming for help, balling my eyes out and clinging onto the bed for dear life. I had absolutely no control over my body at this stage, the pain was unbearable.

My parents felt so helpless. My dad was frantically trying to cool me down by fanning me as I was burning up and dripping with sweat. My mum was running in and out of the room trying to find someone to help. But most unfortunately of all, apparently nurses are not supposed to turn epidural machines on or off, so I would have to wait for the anaesthetist, who was still in theatre performing surgery, to finish her surgery and come and turn it back on. So I waited in purgatory for almost 2 HOURS in this horrific state and, even though I was in so much pain I could barely speak at all, I just remember begging for someone to help me and that I just wanted it to all be over. My mum found watching me suffer like this all too much in the end and she had to step outside so that I didn’t see her crying- not that I really noticed what anyone else was doing anyway! And all my nurse had to say for herself upon seeing me absolutely broken was “Oh, sorry”. She then completely disappeared until the anaesthetist FINALLY arrived after what seemed like forever! I never want to experience pain like that ever again. Meanwhile the ward sister was trying to make my parents leave as “visiting hours were over” despite everything that was happening. Naturally, my mum wanted to punch her in the face for even suggesting that she leave while her daughter was in such a state. And believe me, my mum is a very caring and thoughtful woman, but she’s also incredibly scary when necessary.

Luckily the anaesthetist who came was the same one I had been seeing already and, after being horrified by the frankly nightmarish scene in my room, she leapt into action, set my machine back up on full whack and gave me the biggest bolus she could. She then abruptly called my nurse back into my room and demanded that she fill out a report immediately stating exactly what she’d done to me so that it would go on her record. The nurse looked a little sheepish now, but she then sneakily turned her name badge over so we couldn’t make a note of her details. My mum was however given the details of a couple who offered to act as witnesses to what happened if we wanted to take things further, seeing as they’d heard the commotion all the way down the hall. Obviously after all of the above, I didn’t want this nurse anywhere near me from now on, but I was told by the anaesthetist that because the NHS are so short-staffed, if I were to say that I didn’t trust her with my care I would likely be left without a nurse and the staff might even get “funny” about me complaining and refuse to help me at all. Great. So, after the anaesthetist had finally managed to cannulate me in the foot (that was a new one even for me, but all my arm/ hand veins had been used already), I just had to grin and bear it.

Weirdly, after the pain was more under control and I’d settled down again, I probably slept better that night than I had so far- likely because I was so physically and emotionally drained. The next morning I felt a little better. The stoma nurse came and changed my stoma bag and then I saw my surgeon’s registrar. Now I must say, I haven’t been overly flattering about the care I have received in hospital in the past, and this visit isn’t exactly an exception, but I will say that my surgical team were amazing. They came to visit me and check how I was getting on every day without fail, I was very impressed- and I don’t give out compliments easily. I guess not everyone who works for the NHS give you a reason to moan about them! Up until this point I’d still only been on water, but my registrar told me that I could now brave some milk or yoghurt. In case anyone isn’t aware, after stoma surgery you usually start on milky soft foods like yoghurt, ice cream, or in my case blancmange, at the beginning as they are easiest to digest after surgery. Then, you can move on to bland, soft foods like bread and mashed potatoes and then plain meats etc. But one step at a time…

Although not a touch on yesterday, my pain had never quite fully subsided since the incident with the epidural, so I asked to see a pain nurse. She was still concerned about the fact that after 3 days I still couldn’t even move my toes. Mobility can be slightly limited after an epidural, but not this badly, or for this length of time. Epidurals are actually only meant to last a few days anyway. She was worried about the risk of DVT (deep vein thrombosis) and the fact that they’d already found an infection in my body during surgery. After all, the epidural was an easy target for the infection to spread to. My bloods were being taken almost every day to monitor this, but we didn’t want to take any chances. She advised that we try to remove the epidural and swap to a PCA machine (patient-controlled analgesia) i.e. an intravenous morphine pump that would have a base rate of pain relief as well as a bolus button that I could push every 5 minutes if I needed something extra. That way I would be in control of my own pain relief (and avoid another murder attempt) and soon I could hopefully mobilise.

At around 4pm that afternoon, my epidural was switched off and my PCA was set up. I was incredibly sceptical about this change considering the IMMENSE pain I’d suffered yesterday when it had been switched off, but I knew I also couldn’t stay on the epidural forever, and it wasn’t even solving the pain issue entirely. They didn’t want to actually remove the epidural until it was okayed by the anaesthetist, but it was now redundant, so I familiarised myself with the PCA. Essentially, there is a little button (I’ll put a photograph below) that patients can push when they are in pain to be given a boost of pain relief, but it is engineered to stop people overdosing but locking the button for 5 minutes after it has been pushed. Clever, I know.

Meanwhile, I decided to brave half a plastic cup of soya milk. The strangest thing was that before having this surgery I’d been on an exclusive liquid diet for over 4 months and I couldn’t wait to eat some real food. When I was researching stoma surgery I even tutted at the thought that I might have to wait several days after surgery even to be allowed something as simple as clear broth. I didn’t however, given my firm love of all things food, consider the possibility that I actually might not feel like eating anything for a while. It had been 4 days and even though my surgeons were cheering me on to start consuming something other than water, I was hardly as enthusiastic as I’d anticipated. And my stoma didn’t take overly kindly to the first few sips either! After lying dormant for a while, it suddenly had something real to digest, which made some… interesting… noises! But I guess I would get used to them in time!

One thing I did not appear to be getting used to was the morphine. Later that night things took another turn for the worst. By around 5:30pm my pain levels were rising rapidly and in another couple of hours it was at a critical point again. Not only this, I was also totally out of it again i.e. I was baking hot, I could barely speak or articulate how I felt, I kept forgetting my parents were even with me and my normal breathing became quick low breaths, as if I was struggling for air. My parents went back to yesterday’s frantic fanning and trying to find help. I was really hoping today would go a bit smoother, but evidently there was more in store for me yet! Eventually the anaesthetist came back at around 11pm and decided that the quickest way to get things under control was to restart the epidural with the anaesthetic running at a higher rate and keep the morphine running as well. She also gave me some anti-sickness and some IV paracetamol and said she would be back to check on me just after midnight.

I didn’t rest easy that night. Although the pain settled a little, I was very confused and hallucinating again because of the morphine, so I was trying so hard not to press the PCA through fear of loosing my mind even more. The anaesthetist came back again early in the morning and told me to focus more on the pain and less on the hallucinations and push the button when I really needed to. She turned the epidural up a to 10ml/hr so that I would be a bit more comfortable until we figured out what to do next. Meanwhile I was trying my utmost not to get irritated with the nurses who kept taking my blood pressure, seeing it was low, ignoring me when I said I have a naturally low blood pressure and having a go at me for not drinking enough- even though no one ever refreshed my water jug and it took several hours to get any when I asked.

Anyway, water-related rants aside, the pain team returned later that day and decided that it would be best to change the pain relief set up AGAIN and to swap the morphine to another drug called fentanyl and remove the epidural once and for all- particularly because the epidural had been in use for so long now that they were worried that a possible infection could spread to my brain. They also wanted to start me on a strong oral pain killer called pregabalin for neuropathic pain relief. Luckily, the pain team were pretty on the ball and made sure that the new fentanyl PCA had been running through a new cannula for at least an hour before switching anything else off. Then later today the epidural would be removed for good.