Endurance

An essay in five parts, originally written for a CWRT700 portfolio at AUT in 2019.

MORPHINE AND KETAMINE

Morphine is used for the relief of moderate to severe pain such as after an injury, or operation or pain caused by a terminal illness such as cancer.” (Health Navigator NZ, n.d.)

“When given in low doses, ketamine can improve pain control in the hospital setting. It can be particularly helpful for patients whose pain is not adequately controlled with commonly used pain medications.” (University of Michigan Health System, 2015)

A nurse leaning over me, that’s the first thing that I remember. “Briar,” she murmurs. “Briar, you’ve done really well. The surgery went well, but the morphine isn’t quite cutting it, so we’re going to give you some ketamine.”

Morphine, my dear friend morphine, everyone’s dear friend morphine. A bag at the end of a magic button, ready to make one feel better, sleepy, hilarious, all with one press of a hand that feels weak, almost atrophied. Wonderful and potent, the cure to all the post-operative ward’s ills. Until, that is, someone decides it isn’t.

I had heard stories of K-holes, of horse tranquilizers, of recreational usage of this thing called ketamine. But I hadn’t heard of bed-ridden psychedelic nightmares that make one wonder if increased pain would, in fact, be a preferable trade-off.

The surgery the nurse spoke of was an emergency bowel resection: a perforated intestine, missed in my first ED admission a month before, hidden by a month of steroids, then back with a vengeance and now dispatched with the marvels of modern colorectal surgery. Approximately fifteen centimetres of large intestine were removed, on top of the fifteen centimetres taken from me a year and a half earlier.

I went back under shortly after the nurse spoke to me. There are no more memories of the post-surgical ward, where they watch you so carefully to make sure your body remembers how to breathe and pump blood and fire neurons and all the things that it might not be so crash hot at after however many hours of general anaesthetic. Eventually the machines attached to me and the observations taken by nurses came to an agreement. I was deemed fit to return to the land of the living.

But I remained on the morphine/ketamine cocktail for the next nine or ten days, weaning off a couple of days before my discharge. Pain relief was necessary, especially in the middle few days, when things were heading temporarily downhill, but I kept trying to remember to work up the courage to ask them to take the ketamine off the prescription. I always thought of myself as being a good medical advocate, but in this moment, I let myself succumb to the dazzling yet disturbing psychedelia that I saw every time I closed my eyes.

These days, before any medical treatment that carries even the slightest possibility of needing heavy duty pain relief, I tell my medical team that I would prefer not to have ketamine administered. I struggle to articulate to them why, unable to find the words for the swirling and lurid patterns pressing against my eyelids and how they make me feel unsafe, like I’m experiencing a different dimension of pain from that which my body is suffering from. But they put the note on my chart anyway, and I breathe a sigh of relief every time.

PREDNISONE

Prednisone is an oral, synthetic (man-made) corticosteroid (steroid) used for suppressing the immune system and inflammation.” (MedicineNet, n.d.)

The medical equivalent of a ‘fuck you’. A prescription paper that technically says prednisone, but really says get your shit together, body, this is unacceptable, you’re basically on your own. It is the paper and flour glue to stick you back together, ready to be washed away in the next heavy rain.

I avoided it for a long time, I was quite proud to have done so – see, these tiny little pills have an ever-growing list of side-effects, messing with your weight, your sleep, your bone density, and your mind.  Eventually, it was prescribed, and it helped. But the moment I finished the course, it didn’t anymore. That isn’t the way it’s supposed to work, in a perfect world, or even in a less-than-perfect world. Prednisone is meant to get things under control, to get things to a point where they can stay that way. I’ve never been so lucky.

Prednisone is what sent my depression into overload, rendering me occasionally catatonic, making things bad enough that I finally got medicated. Perhaps I should thank it for that. Prednisone gave me insomnia, a ravenous appetite, bloating, a typical ‘moon face’ situation. It possibly affected my bone density, giving my bone-breaking stoop stumble a helping hand, years after my first course of steroids.

It is hell, but it works… while it’s there. Close a soundproof door on a screaming child and you may get some respite, but when the door is opened again, the kid’s still there. Side effects are bad enough, but these days that’s not my main fear. My second ever course of prednisone patched up the symptoms of my then-undetected bowel perforation, but not the cause. The pain went away, until a day or two after my final little white pill, when it came back in familiar stabbing waves.

Every flare that takes me to the point of needing steroids makes me panic. What are they hiding from me and my rotating cast of medical characters?

MIDAZOLAM AND FENTANYL

Midazolam injection is used to produce sleepiness or drowsiness and relieve anxiety before surgery or certain procedures. When midazolam is used before surgery, the patient will not remember some of the details about the procedure.”(Mayo Clinic, 2019)

Fentanyl’s therapeutic indications include: “Short duration analgesia during pre-medication, induction and maintenance of anaesthesia, and in the immediate post-operative period.”  (MedSafe, 2017)

I consume these together, on occasion. When I say consume, I mean through my veins, a needle in my arm, circulatory valves working in sequence to carry those cunning molecules to the necessary receptors. They are very good at their respective jobs.  

The occasion? Scopes. Scopes, because the word is less nose-wrinkling than colonoscopies, and because it also encompasses the more mysterious but less intrusive flexible sigmoidoscopy. Whatever the specifics of the event itself, I always request sedation. Not because I’m going to freak out, have a meltdown, scream at this unusual intrusion, but simply because I want to avoid discomfort. There’s also the fact that I think I deserve a bit of a high, for two reasons. One: if I’m going to have a camera inserted through an orifice usually, in my personal preferences, not prone to greeting foreign objects, a reward seems fair. Two: we chronically ill folk need some small perks along our arduous and frustrating journeys.  

The hard part of getting to this delightful combination is finding the vein. If you’ve never had the joy of a colonoscopy, or lived in close proximity to someone shortly to undergo one, you may not realise the process that leads up to the big event. As something of a professional intestinal model, it’s a photoshoot like no other, but the preparation process becomes second nature.

Three days before the procedure, schedule a supermarket trip. In the coming days you will be limited in what you can consume, you will feel weak, and being surrounded by food will feel like a cruel joke. On this supermarket trip, purchase white bread, eggs, chicken, plain rice crackers, Vanilla Wines, chicken two-minute noodles. The food must be low-fibre, low-residue. Ensure that lemonade, apple juice and Powerade are purchased in large quantities. Make sure that the Powerade is the yellow kind, or the strange white kind, not blue or red or purple. You aren’t going to be allowed to drink anything with dark coloured dyes.

Two days before the procedure, the patient must follow a low-residue diet. Limit yourself to the things you purchased. Poach or bake your chicken. Don’t use oil. Imagine better things while you eat your rice crackers. Plan what you will eat when this is all over. Think fondly of salad.

The day before your procedure, you may consume a small low-residue breakfast. Enjoy it, as it’s only clear liquids from now on. Get your drinks ready – perhaps make up a broth with the two-minute noodle sachet if you need a savoury smack of something. Later in the afternoon, make up the sachets of laxative that the endoscopy nurse will have thoughtfully couriered out to you. This will be called Glycoprep, or Picosalax, or Kleanprep. Regardless of what they send you, it will be the worst thing your mouth has ever encountered. You will have to drink several litres of the stuff, precise amounts will depend on the brand you’ve been given. The best advice you can get at this point is to make sure you have a straw in the house, so that you can quickly gulp down the refrigerated hell juice, by-passing the tastebuds as much as possible.

If you live in a flat with only one bathroom, this may be an occasion to stay with understanding family members who have a larger home. You aren’t going to want to chance someone else being in there when you need to be. When the prep hits, you might have about thirty seconds warning. Stay as close to your bathroom as humanly possible. Dress warmly. You’re about to get very dehydrated, and you’ll feel wretched and shivery as a result.

By the time you’re actually in for the procedure, the worst should be over. You’ll still be feeling shivery and starving, of course, but the knowledge that you’ve finished drinking this prep and your insides are squeaky clean is a true blessing. However, veins and dehydration don’t mesh well. Prepare for much massaging of the crook of your arm, examination of all the surfaces of your wrist and hand. Wherever they can find a vein that appears even slightly willing, they’ll tap it. I’ve heard of desperate nurses using ankle veins for cannulation.

But they will get there. The needle will go in, then the tube, then the drugs, and if you’re me, you’ll feel quite wonderful, not to mention chatty. Midazolam is supposed to have an amnesiac effect, but I must have built up a tolerance over my fifteen or so scopes, and so I just enjoy it, and participate as fully as someone who is stoned and has a camera in their anus can be. Last time I was on the table, I said to the gastroenterologist ‘oh, it does look better than last time!’ – and in my defence, it did. The walls of my large bowel looked smooth and pink, not angry and red. It was quite the transformation.

ANTIBIOTICS

Antibiotics, also known as antibacterials, are medications that destroy or slow down the growth of bacteria. They include a range of powerful drugs and are used to treat diseases caused by bacteria.” (Medical News Today, 2019)

For someone with such a relatively hefty medical file for someone my age, I haven’t actually had too many rounds of antibiotics. Certainly a few as a child, a teen, I’m sure – solutions for infections and bugs and other nasties of youth. As an infant, I managed to get a MRSA infection, from a contaminated batch of barrier cream. A nappy rash, as it turns out, can inadvertently lead to much more troubling things.

When I was in hospital at the start of 2015, recovering from my perforated bowel, at one point, it seemed as though somewhere in my abdomen a touch of sepsis might be brewing. As it turned out, everything righted itself, but it did mean being prescribed an antibiotic along with everything else that I was rattling with over the following few weeks. There were many terrifying moments in that hospital stay; I was very, very sick. Antibiotics don’t help with terror, as it turns out. The initial doses, over the first few days, were administered through one of my various IVs. Then, on my second-to-last day, they switched me to tablets.

In my memory, they are huge, the sorts of pills that would be created for a creature several times larger than an average human female. A horse pill, to match the horse tranquilizers of my pain relief, perhaps. In reality, I suspect they were only a little larger than OTC painkillers. If I’d been sensible, I might have seen the obstacle in front of me, broken it in pieces, taken it bit by bit. Blame the ketamine, or excitement at the fact that going home was drawing closer, maybe. I took the pill, with a sip of water… and it stuck in my throat. I choked, coughed, spluttered, wondered if, after surviving illness and surgery, this was going to be my undoing. I wept from pain and discomfort, fear and frustration, and took a great deal of soothing to calm down once it was finally dislodged.

Otherwise, my forays into antibiotics are purely prophylactic. A father in the Solomon Islands means visits with all kinds of tropical diseases on offer – and if malaria can be avoided with a daily doxycycline with breakfast, it’s worth the inconvenience of extra sunscreen and slight nausea.  

BIOLOGICS (A.K.A. THE ‘MABS’)

“Patients with severe immune-mediated inflammatory diseases, e.g. rheumatoid arthritis, Crohn’s disease or psoriasis, often respond well and relatively quickly to treatment with biologic medicines such as tumour necrosis factor (TNF) inhibitors. For a patient to qualify for subsidy for these medicines, treatment must be initiated by a relevant specialist, e.g. Rheumatologist, Gastroenterologist or Dermatologist. (BPACNZ, 2013)

If you have inflammatory bowel disease such as Crohn’s disease, ulcerative colitis, or a handful of other unusual variations, you will face an initial range of options: mesalamine, sulfasalazine, steroids. The second round of options takes you into immunosuppressants, the kinds of drugs given to patients with organ transplants, normally azathioprine or 6-mercaptopurine. If you fail to respond adequately to all those avenues, you will likely be a candidate for biologics.

For me, that meant mesalamine and steroid enemas, then mesalamine pills, then azathioprine pills, with no progress at all, just worsening symptoms. To complicate things, however, my diagnosis was left-sided ulcerative colitis. Biologics are very expensive, and as such, they require special authorisation to be prescribed and administered. Usually, left-sided colitis isn’t considered ‘bad enough’ for infliximab authorisation. Pancolitis, where the whole large intestine is affected, is generally the requirement in order to be considered for infliximab, and with a diagnosis of ulcerative colitis, adalimumab wasn’t even an option.

My gastroenterologist suggested we try a drug trial first. I only found out it was called etrolizumab when I Googled the name of the trial and the company behind it years after the fact. I continue to this day to stumble over the word when I say it aloud, having only ever seen it written down, never even whispered by a nurse.

“Etrolizumab is a humanised monoclonal antibody that selectively binds the β7 subunit of the heterodimeric integrins α4β7 and αEβ7. We aimed to assess etrolizumab in patients with moderately-to-severely active ulcerative colitis.” – (Vermeire et al, 2014)

First, a chest x-ray, blood tests, full colonoscopy. Then, weekly trips to Middlemore Hospital from my job on the University of Auckland campus. Taxi chits were provided, and with time I managed to get the whole trip done in an hour and a half. Taxi, head to the gastro ward, quick chat with the nurse in charge of the trial, injections administered. Lie down for a few minutes, trek down to the lab with a bag full of vials, get blood drawn, faint (only once or twice), walk back up to the gastro ward with my bag full of vials now full of my blood. Hand bags over, taxi back to work, reimmerse myself in the world of textbook ordering.

My blood would then be sent off to Singapore for testing. I had a flexible sigmoidoscopy, a kind of partial colonoscopy, once a month. It was an ordeal, but one I became used to. It became clear with time, however, that the drugs didn’t work for me, even after I was transitioned from the double blind trial to the open label one, guaranteeing I was receiving the real thing and not a placebo. So that time of my life ended. More poking, prodding, probing over those few months than any other period. I was just getting sicker, which meant it was time for the next option: infliximab.

“Infliximab is one of a group of anti-inflammatory agents that work by blocking the action of the pro-inflammatory cytokine, Tumour Necrosis Factor-alpha (TNF-α). TNF-α is a signalling protein that increases the activity of cells involved in inflammation.” (Yan & Bishop, 2016)

Infliximab is also often called Remicade, its brand name. Instead of weekly injections, I received IV infusions, first every couple of weeks, then every six weeks. Injections and pills are one thing; having to check into hospital for several hours to be hooked up to a $4000 bag of medicine while sitting in an armchair or propped up on a bed… this can alter the way you look at yourself. You are a sick person, here is the proof. Here are the plasters on your arms from the different places the nurse tried to get the lure in, but your veins weren’t coming out to play. You are tired from the antihistamine they gave you alongside the treatment to avoid reactions. Medicine in order to tolerate medicine.

Infliximab didn’t work either. After six months of trying, it still made no difference. Months of trying, like it was a pregnancy, a life to bring into the world rather than simply trying to preserve one already here. After infliximab, with a diagnosis of ulcerative colitis, the next step was surgery, described as elective. Elective, as if it were something I wanted to happen, that I was choosing, a cosmetic procedure, a little tune up.   

It was a major operation. I woke up from it with fifteen fewer centimetres of large intestine and one brand new stoma, budding red on the lower left side of my abdomen beneath a colostomy bag. Biopsies from the procedure gave me a new diagnosis of Crohn’s colitis, with  inflammation through all three layers of the large intestinal wall. They can’t see that level of inflammation from standard colonoscopy biopsies, unless they punched a hole all the way through your intestine, and that wouldn’t be a good thing.

For a while after surgery, once the pain and exhaustion had ebbed away, I was well. I planned for my new life: moving to Wellington, studying publishing, writing, being the cool creative kid that I always knew I could be, that my health had put on hold for an unreasonably long time.

The week before my move, I had a colonoscopy. For the average person, the thought of a camera tube going up the usual colonoscopy entry point is disconcerting enough. I had the relatively rare experience of said tube going in through the little hole in my stomach. My gastro said I would need to go back on medication, which made sense, given that some of my symptoms had been gently flaring up again.

The thing about moving cities is that you move DHBs (district health boards) and things don’t always happen as quickly as they ought to. Ever since I’d been on the books with gastroenterology at CMDHB (Counties Manukau DHB), I’d been a priority. My gastro wrote a letter to pass on to my new GP, in order to make sure I was seen promptly by the CCDHB (Capital and Coast DHB) gastroenterology unit.

I moved in January. It was June before I saw a specialist again. My new gastro was furious, though with the system, not with me. I was bad, perhaps not at my peak of illness, but getting there. I’d lain alone in my bedroom in immense pain, wondering if I should call an ambulance, but never quite doing it. My new diagnosis of Crohn’s and my renewed level of illness meant that I was now a candidate for adalimumab.

“Adalimumab injection is used alone or with other medications to relieve the symptoms of certain autoimmune disorders (conditions in which the immune system attacks healthy parts of the body and causes pain, swelling, and damage).” – (MedlinePlus, 2018)

I started my new biologic. Adalimumab is a hell of a mouthful, so we all invariably refer to it as Humira. Humira is the drug that costs the most overall in New Zealand, in overall medication spend. It’s used for a variety of conditions, like rheumatoid arthritis, ankylosing spondylitis, severe psoriasis and Crohn’s. Basically, if you’re blessed with a condition in which your immune system takes issue with part of your body, Humira may be in your future. The efficiency of Humira, this variety of applications, and the eye-watering cost of each dose – around $900 a syringe, when I was first on it – make it a significant chunk of change to the taxpayer. I’m forever in our collective debt as a Humira high roller.

Etrolizumab was hospital administered syringes. Infliximab was hospital administered infusions. Adalimumab/Humira was a brave new world of independence, self-administered injectable pens. Pinch, place, press. Try not to cry out during the ten seconds that the needle must stay beneath the skin in order to let all of the medication flow in.

Alongside a fresh immunosuppressant (6-mercaptopurine, sibling of azathioprine), for the first time in my gut-challenged life, I made progress. It kept the worst of my illness at bay. It wasn’t perfect, with fortnightly jabs unable to hold off an eventual bowel perforation later that year. Ultimately though, a shift up to weekly jabs after another operation kept me in good nick, got me the healthiest I’d ever been in my twenties.

If I were a sensible person, that would be the end of it. She took her medication for as long as the doctors said she should and lived happily ever after. But anxiety’s a bitch. I knew I’d have to come off it at some point. You don’t stay on biologics forever, if only because there’s an ongoing process of assessment to say it’s vital that you stay on that course of treatment. After all, at the standard dose of one a fortnight and a price of $900 a syringe, that’s over $23000 for a year of Humira. And for at least six months of my time on the drug, I’d been on it weekly.

So when my prescription ran out, instead of contacting my gastro, I just… stopped. I figured the day would come soon anyway, and it was too stressful to contact the specialists when I wasn’t really especially sick at that moment in time anyway. It did not have the intended result: a magically healed colon, no further need for medical attention. A year and a half of gradually spiralling out of control have led me to today: a new special authorisation number, a fresh prescription and a sharps container rattling with the first few pens that are optimistically paving my way to wellness again. Bruises blossom on my thighs and stomach courtesy of hands that are out of practice at performing this ritual, but I will endure it. I’m very good at enduring.

References:

BPACNZ. (2015). Biologic Medications for the treatment of inflammatory conditions: What does primary care need to know? Retrieved from https://bpac.org.nz/BPJ/2013/December/docs/BPJ57-biologic.pdf

Health Navigator NZ. (n.d.). Morphine. Retrieved April 11, 2019, from https://www.healthnavigator.org.nz/medicines/m/morphine/

Mayo Clinic (2019). Midazolam (Injection Route). Retrieved April 11, 2019, from https://www.mayoclinic.org/drugs-supplements/midazolam-injection-route/description/drg-20064813

Medical News Today (2019). What to know about antibiotics. Retrieved April 11, 2019, from https://www.medicalnewstoday.com/articles/10278.php

MedicineNet (n.d.). What is prednisone, and how does it work?. Retrieved April 11, 2019, from https://www.medicinenet.com/prednisone/article.htm

MedlinePlus (2018). Adalimumab Injection. Retrieved April 11, 2019, from https://medlineplus.gov/druginfo/meds/a603010.html

MedSafe. (2017). Data Sheet: Fentanyl. Retrieved from https://medsafe.govt.nz/profs/Datasheet/f/Fentanylinj.pdf

Vermeire, S., et al. (2014). Etrolizumab as induction therapy for ulcerative colitis: a randomised, controlled, phase 2 trial. Lancet, 384(9940), 309–18. https://doi.org/10.1016/S0140-6736(14)60661-9

University of Michigan Health System. (2015). Ketamine for Pain Relief: What you need to know. Retrieved from http://www.med.umich.edu/1libr/Anesthesiology/KetaminePainRelief.pdf

Yan, J. & Bishop, J. (2016). Infliximab. Retrieved April 11, 2019, from https://www.starship.org.nz/for-health-professionals/starship-clinical-guidelines/i/infliximab/

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s