The first two weeks after my surgery were the hardest for me. Not physically – that was difficult, yes, but not for long – but mentally. I felt like I had been dropped from a plane into a pit: flying high to suddenly sink desperately low, no rope or ladder connecting the two. No way to carry myself back out of the depths.
A new ward, a new bay, new nurses, new layout. I feel ripped away from my previous ward, where I knew all the nurses, and felt comfortable and safe. I don’t feel safe here. I am irritable and emotional, sobbing for reasons unknown at least twice per day. I’m in the middle of a six-bed bay, and the curtains are drawn a lot, because I don’t want the other patients or any nurses to see me cry. But that means I shut out a lot of daylight, too. I start to miss fresh air desperately.
I feel like an experiment, straight from a sci-fi movie. A body floating in a tube for preservation, with so many wires coming out of it. My Hickman line, connected to my TPN. A small cannula for extra fluids. A urinary catheter. Another cannula, attached to my pain relief pump. A drain in my abdomen. It is an inflexible plastic tube, stuck right in the crease where my abdomen meets my right thigh. When I move my leg, it doesn’t bend, but stays rigid, chafing at the edges of the hole in which it sits. It’s more painful than my incision. This seems illogical, that a hole smaller than a 10-pence piece can cause more pain than being sliced down the middle. But it is a constant reminder of my invalidity, more so than any of the other attachments.
My ostomy is another source of anxiety. I don’t hate it. I know it’s saved my life. But I’m afraid of it. It puts out so much liquid, all the time, needing to be drained every hour. I begin to think I will never be hydrated again, that moderate dehydration is the best I can hope for. I cry the first two times a nurse changes my bag. I don’t see how I can ever do it myself, when this Vesuvius is constantly spouting lava, and I am not dexterous enough to hold a wad of tissues to mop up the waste and apply a fresh bag at the same time, as the stoma nurses do.
I feel like I should never have agreed to this operation. When animals get in this state you put them down, I think. Hope is so distant as to seem like something I’ve made up. All I want to do is scream, or run away, anything to get out of this cell with beige curtains instead of bars. This is normal, everyone reassures me. You’ve had major surgery, your body is still shocked, it won’t last forever. Rationally, I know this. But I cannot believe it when days have passed and still I feel only abject despair.
“Focus on getting one thing taken out at a time,” my mum advises, knowing how trapped I feel: tethered to my hospital bed by all these tubes. As always, she is right: one by one, things start to be removed. First it’s the huge grey cannula that I woke up from surgery with, the one they used to give me a blood transfusion. It leaves a mark on the back of my wrist that eventually fades into a scar.
Next it is the urinary catheter. I’d never had one before! It’s an uncomfortable feeling: I can’t sit or lie down properly with a tube underneath me, and I’m glad to be judged able to make it to the toilet to urinate – it’s the first step towards feeling more human.
My patient-controlled analgesia is the next to go. I’d actually stopped using it a full two days before they took it away. Although the pain team agreed it could be taken out early, the ward staff were adamant that it wasn’t coming out until day four after surgery. So I hefted around a cannula that was getting more and more irritated, and an exceedingly heavy PCA pump on my IV stand, all for a button I wasn’t pressing and a syringe of Fentanyl I didn’t want. But once it was taken away I felt so much lighter. Now there were only two pumps on my IV stand, and that I could start to live with.
Once it was only TPN and fluids I was connected to, I started to feel the tiniest bit better. If we could just get my fluid balance correct, I could go home, right? Yes, that was true, but the process was far longer than I expected. On top of that, the surgical team couldn’t tell me when they thought my reversal would be – even if it was an estimate, like 4 or 5 months – and the gastroenterologists were in deep, drawn-out discussions about the next drug to put me on. I itched for information and nobody would give it to me. I began to feel shut-out, deliberately uninformed, like when I was a child. Doctors would make decisions and do things to me, but I didn’t know what they were planning or why they were doing it, and that only contributed to my fear. To this day, one of my major medical anxieties is not knowing what’s going on. Please just tell me, I said, even if you’re not sure, please tell me what you’re thinking at least.
And eventually (after at least two miserable weeks stuck in the fearful dark), I started to get answers. The surgeons aren’t sure when my reversal would be, but it depends on how I’m healing and whether my internal stitches had healed. I might find out in January/February, when I go for my first surgical check-up after discharge.
The gastroenterologists… that was one moment when I briefly thought ignorance might be bliss. They turn up at my bedside one morning, a veritable army: my consultant, a registrar, two first-year doctors, and a clinical nurse specialist. Briefly, I felt besieged. In short: I have two medications left to try, Stelara and Entyvio. Entyvio exerts its strongest effect on the colon, so that is probably useless, since my disease is confined to my small bowel. That leaves Stelara, and as someone who’s failed both Remicade and Humira… well, my odds aren’t good. That sounds incredibly bleak, but it’s true. The statistics show that in patients with refractory disease, Stelara has only about a <40% chance of putting me in clinical remission, i.e. no symptoms, but even less chance of putting me in histological remission, i.e. no evidence of the disease on biopsies. So my gastoenterologist started talking clinical trials, for after Stelara failed. In particular, stem cell transplants.
I felt like I had been hit with a sledgehammer. Stem cell transplants – by far the riskiest and most uncertain of all those clinical trial options. I was that ill, and that unresponsive to treatment, that my doctors were willing to put me forward for a stem cell transplant, a treatment that could at worst kill me and at best leave me in isolation for weeks while my immune system was killed and revived (because during that time, even the common cold could result in death). I remain calm and straight-faced while they deliver the news, and when they leave, close the curtains around my bed and weep for hours. “I never thought, when I was diagnosed with this disease, that I’d be a hopeless case by the time I’m 21,” I sob down the phone to my brother.
That was the lowest point. From there, things started to look up.
My output gradually lessens as the days pass and I begin to take high-dose loperamide to slow my bowel. They later add codeine for the same reason. I start to notice patterns: when my stoma is most active and inactive. I come to understand this tempestuous intestine of mine. And when I manage to change my bag on my own for the first time, with the stoma nurse watching – and, at the end, declaring that I’d done it “perfectly”, I could cry from relief.
I manage to strike a balance between eating and drinking for comfort and having increased stoma output. In an ideal world, I would eat and drink nothing at all for minimum output, and therefore minimum dehydration. But my surgeon argues that’s unfair, and I should be able to eat and drink for pleasure – because asking someone to stop eating and drinking entirely, especially so suddenly, is a massive psychological burden, and I was already on precarious ground. So I eat two small meals a day, and keep liquids low, and my output starts to even out, remaining stable. This means my TPN can be tailored to provide enough fluids to offset the losses from my stoma and urine – and then some. Because I’ve got functioning kidneys, any extra will just be urinated out. Better safe than sorry. We eventually find the perfect volume of fluid to keep me well hydrated, something I thought could never be achieved.
So by that time, the only thing stopping me from going home is my TPN. I now need compounded TPN, and standardised bags aren’t going to cut it for me any more. Since the Calea crisis, bespoke TPN is scarce, and it will take time to obtain. My nutrition team first need to come up with a prescription, evaluating the precise amount of fluid and nutrients I need to survive. Then, an application must be submitted to NHS England, detailing exactly why I need custom TPN over other patients. Once the NHS make a decision, my nutrition team must provide a TPN manufacturer with my prescription so they can make my bags. Then they have to get in touch with a homecare delivery service, to make sure my bags and supplies are delivered to me. That last point is less arduous than it could have been, because I was on TPN already, and so I’m already registered with a delivery company. But the process still takes weeks.
“We’ve submitted the application to NHS England,” one of the dietitians tells me, when she drops by one afternoon. “We should know in a couple of days if they’ll say yes or no – but they’re not going to say no,” she adds confidently.
“How long do you think it will take after that?” I ask. She grimaces in response. “I mean, I know you can’t tell me exactly. But what happened to the last patient this happened to?” I ask, knowing that I can’t be the first.
She thinks. “Our last patient… it took about two to three weeks. He’s being discharged on Tuesday,” she adds, cheered by the thought.
I nod. Now we have a time-frame. Three weeks from Thursday puts my release at the 17th of December. That’s still before Christmas! I heave a huge sigh of relief.
But, dear readers, you know I ended up leaving the hospital sooner than that!
Only a day or two later, my nutrition clinical nurse specialist comes to see me. This woman is my saviour: she trained me in administering my TPN with absolute rigour and scrupulousness, so I feel safe in knowing the process is as hygienic as possible. She cares not only about my physical health, but my mental too, and gave me her phone number to text or call her with any problems. She has been instrumental in making me feel like I can handle this. So when she turns up at my bedside one morning at 8am, even though I am in the middle of my toast, I am glad to see her.
“We have a date,” she says to me, a smile on her face. “We think you could be out next Wednesday.”
I am speechless. A few seconds pass in silence, then I immediately start gabbling about how surprised and pleased I am, and how grateful, seeing as I thought it would take three weeks and it will only take one. “Thank you. Thank you so much. Thank you,” I say over and over as she leaves. I immediately FaceTime my parents (although they are still in bed) to share the good news. All three of us are jubilant.
And from then on I begin to count down the days. Everything is so much easier now. Waiting no longer seems like endless torture, but something I can while away, watching Netflix and reading books and magazines and checking in with my friends. I start to appreciate everything again. I am finding joy again, something I was scared I had lost completely.
When Wednesday comes and my parents arrive, I slam into them with the fiercest hugs I’ve ever delivered. All my relief, gratitude, and love is bound up in those embraces. Together we deliver cards and biscuits to the three wards who have looked after me during my stay. We save the best for last: the ward that cared for me during my first month-long admission in August, and to which I was first admitted in October, before my surgery happened. We enter the ward and I can’t see the ward sister, who I adore. Instead, I go to hand the card and biscuits to the nurse in charge, when suddenly—
“I know that voice,” someone declares from the kitchen nearby. It’s the sister, and she rushes out, ecstatic to see me. As she proclaims how different I look, and how lovely it is, I expound on how it never would’ve been possible without her help, and how this ward is where I feel safest and most among friends. She gets tearful and gives me a parting hug.
“I’ll see you soon… but hopefully not too soon,” I say as I turn to leave, with a cheeky grin.
So we drive home, and for the first night I waver, wondering if now that I am out of hospital everything will spiral out of control and I won’t be able to handle it. But when the first night passes, I put up and take down my TPN, and manage my stoma (and proceed to have the most wonderful sleep I’ve had in months), I begin to think I might be okay. The next morning, when I show my mum how I change my bag, and she is curious and impressed, that feeling increases. By the next evening, I am confident in myself again.
Now that the ordeal is over, I am filled with so much love. Objectively, my situation sucks. I have only 50 cm of functioning intestine left and without my IV nutrition I would die of dehydration (and starvation, but dehydration first). But this has quite literally saved my life. And it’s not forever, whereas there are some for whom this is permanent reality. It’s sobering. And at the same time it’s given me a much deeper appreciation for the little things. Sleeping in my own bed. The unconditional love of my dogs. Watching a movie with my family. A warm hug. The sunrise. Fresh air. All of these things fill me with such joy that I think I could explode with it – but instead I am like an overflowing vessel. The joy spills out of me and I am affectionate, sentimental and funny. Christmas is my favourite holiday, and as I bumble about the house humming Christmas songs, I think that 2019 might have been the worst year of my life, but it will contain the happiest Christmas yet.