Notes from my hospital bed

An unwelcome nine day stay

*This post contains some descriptions of medical trauma, so if this is upsetting, do not read.
**The below was written on Friday 16th Feb, edited later for clarity.

The day has a regular rhythm in hospital: the humdrum sounds of beeping, regular observations, a 6am blood test every day, even if I’m asleep. In the early days, blood pressure and temperature checks every two hours. It’s a place to treat sick people but it’s not somewhere to rest or truly recover. Sick people, so many sick people. People worse off, people who may never be better. People who may not leave.

Your conversations revolve around how you are eating, what your pain level is, do you need more morphine, whether you are going to the toilet, if you managed to sit up today. If you can please try to get up and sit on the chair - blood flow helps you heal. About blood sugar, samples, more samples, morphine that makes you hallucinate, so many doctors asking about medical history, where I have to explain that yes, I’ve had four major abdominal surgeries now in 6 years, which even to them seems somewhat surprising.

Still, it’s day 9 here. I hope to go home today, and I’m finally lucid enough - no longer on morphine - to be able to digest some thoughts from what it’s been like. A lot of people have also been asking me: "what happened?". Perhaps it’s the writer in me, perhaps it’s undergoing a previous traumatic surgery, but I never mind sharing the details. I also know that despite the crippling pressures facing the NHS, despite some delays and my rapid deterioration, I’m extremely lucky to have had the emergency care I had from highly qualified surgeons, when so many cannot. The staff perform miracles, every day, with kindness and compassion.

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It started last Wednesday. I went for a lunchtime run and when I came back I felt an ache in my stomach. I braved it through two short zoom calls as it seemed too short notice to cancel only minutes before, then curled up in a ball in bed passing the waves of pain that eventually brought me to tears, which is extremely unusual for me. I somehow dragged myself up to collect the kids from school - it was only a stomach cramp after all - but when I made it back I collapsed on the sofa. My daughter warmed up soup in the microwave for her and her brother. They shared a chocolate bar too, not sure whether to laugh at my lack of intervention or to be concerned. They are only six and four. They covered me with blankets, but when my husband rushed home it became too much and my daughter started crying too. By this point I was sobbing uncontrollably, the pain was that bad. I could no longer stand. She told me she wished she could take my pain instead, echoing words I had once said to her.

When I started vomiting up liquids my clever sister in law (thanks Jo) raised the alarm, A&E, now! Ambulance. She knew my history and said perhaps I had intestinal adhesions. In layman’s terms, after a surgery your body builds up scar tissue, and although it’s rare, your intestines can stick to that scar tissue, which is called an adhesion.

No ambulance - it was a two hour wait as the bar to send one is basically "is the patient conscious". Taxi it is, alone, my husband opting for efficiency over the time it would take to find someone to come and put the children to bed in his place. An excruciating wait. Sick in the triage room, curled up, whimpering. A doctor sees me about two hours in and swiftly sends me for a CT scan - he asks my history and also diagnoses a likely adhesion/hernia. He tells me to stop eating and drinking in case of surgery.

I'm given some pain medication but it does nothing. The CT scan confirms adhesions but they can’t see whether there is also a hernia. It’s a choice between operating or sitting tight and hoping my bowels are only partially blocked - in which case surgery can be avoided. They tell me not to eat, stick a tube down my nose and suck up any excess liquid from my stomach, hoping this might unkink my bowels. 50:50 chance, I’m told, or surgery. I vomit while the tube is inserted. I say sorry. "You don’t need to say sorry", the nurse says.

24, 25, 26, 27, 28, 29, 30 hours in A&E:
I feel worse and worse. I’m not allowed to eat or drink, not that I want to. I kept asking to see the doctor only to be told I was in the care of the surgical team, so the A&E ward doctor can’t help. My husband finds a local friend to come over while the kids sleep, and comes to advocate for me. He explains I have a high pain tolerance, and something is really wrong. I’m given something called Gastrographin which I’m told could help over a 24 hour period, but it’s given 9 hours late. Because I’m still in A&E nobody there seemed to know to give it to me, and nobody from the surgical team reappears. It’s only when my husband asks to see the lead consultant that someone comes. It’s only when she pages the surgical team that they appear. A protocol of hierarchies - a summons from a nurse didn’t do the trick. She says sorry. He says sorry. Meanwhile, I’m deteriorating. I vomit the Gastrographin back up three hours later. It doesn’t taste nice. I inform the nurses. I tell them it’s not working.

There are no beds. I end up spending 30 hours in the A&E ward, dosed up on morphine, but still the pain worsens. And did you know that two nurses need to sign off morphine, so if one is busy, it just doesn’t appear. I know that now. Eventually I’m transferred to the ward where I buzz the nurses with increasing alarm. I tell the nurses what the surgeon said to me, if I get worse, waiting isn’t working. I text my mum at 3am: “It’s good you’re coming, in so much pain”.

Did you know that if an intestine is stuck it will lose blood and oxygen and begin to perforate and can cause sepsis. I know now that that's what was happening to me. It was just impossible to see on a scan.

40 hours since admission, 52 since onset of pain, a junior doctor comes to see me at 6am and takes blood. It spills. He has to follow what’s in my notes of course, but he touches my stomach and seems somewhat alarmed. He rushes off to another emergency - I barely notice. All I feel is the throbbing rhythm of pain and nausea. Three hours later he’s back, he calls a colleague; a registrar. He says again that we have to wait to see what the results from the x-ray reveal - to see if the Gastrographin has travelled anywhere. I tell him my history of previous surgeries, he touches my stomach. It looks lumpy (or am I hallucinating?) and I cry out. He calls another colleague - a senior surgical consultant. He feels my stomach and within 2 minutes he makes the call, surgery it is. It’s now 10am. I plead with him to try keyhole (laparoscopy) first, he says he will but is honest with me - it will probably be a midline incision down my stomach. It’s only when you deteriorate so much that you see someone most senior. I go for another X-ray and wait five hours for my turn, I’m an emergency but there’s other emergencies too. I’ve been the ‘other emergency’ before. There’s limited operating space and the procedure requires a specialist. Mum arrives.

Five hours later I wake in the PACU (post anaesthetic recovery unit) for a surgery we had optimistically been told might take one hour, I’m too out of it to even process what happened, all I hear is it went well. Nobody calls my husband, he has been pacing around at home for five hours while the kids sleep. My mother waits in the hospital somewhere. Nobody debriefs her as she’s not listed as my next of kin. Nobody was listed. No next of kin: a form left blank. She finds me and sees I am out the other side.

Debrief

The next day I hear what happened: a midline laparotomy with intestinal resection due to perforation. I later read in my notes that they removed pus in all four quadrants and performed a full washout, meaning I had gone septic. I’m probably writing the terminology all wrong.

The surgeon had to remove 60cm of damaged intestine. He also fixed a hernia as some of my intestines had creeped into a gap in the lining of my stomach, so that had to be fixed too. This is what had caused the full blockage, which had been impossible to see on the CT scan.

All the right protocols were followed. It’s important to try a non-surgical route first but here’s the issue: there was no way to alert someone senior enough to make a decision in the 20 hours that I was getting worse and worse on a treatment that had a 50:50 chance of working. If it was working the vomiting should have stopped. The pain and tenderness increased, and infection only shows up in blood results some time later, so bloods alone are not diagnostic.

Meanwhile blood and oxygen stopped flowing to a part of my intestine. I don’t have the medical knowledge to know when the perforation occurred. It might have been so bad in there from the start due to scar tissue from past surgery, "like a ticking time bomb", my obstetrician friend says. It took a spiked temperature to trigger a closer look. My CRP (a marker of inflammatory response in the blood) rose to 311.

This is in no way a criticism of the care I had - I was seen by top surgeons. How can you know something is really wrong until a patient starts deteriorating rapidly? It takes the most senior surgeon, who is most in demand, to make that final decision. This is simply an objective reflection of just how stretched the NHS is. “12-hour waits” to get admitted to a bed are becoming normalised, news just out this week, though in my case it was 30 hours.

Lucky

I am certainly lucky the surgery was a success, though I remain at a higher risk for future adhesions as well as chronic pain. It’s been mentally and physically challenging, and I have a lot of recovery to do. In the end I didn’t eat for 6.5 full days as they didn’t want to risk disturbing my bowels while they were recovering after surgery. Anyone who knows me though knows I’m an optimist. With time, things will only get better, right? In many ways I am lucky.

Of course it can happen again - each surgery adds more scar tissue (a key reason they aimed for a preventative method first), but it’s out of my control. Of course a part of me is angry because the reason it happened at all is due to a medical error in a C-section over six years ago, but to dwell on the negativity of the past does nobody any good.

To take a note from my good friends the stoics, we cannot control outside events, but we can control how we respond.

I'll respond by resting, trying steadily to regain the weight and hugging my children tight.

Thank you to everyone who helped us out or checked in over the past couple of weeks, it means more than you know.