New Year

I’m not normally one for the New Year. The thing is, that it’s usually a time for goal-setting and reflection on the year’s achievements, which I absolutely loathe. Nothing like being too ill to do everything you wanted in an ENTIRE 365 DAYS and then looking back on it with complete regret! So I usually try not to think about it. The end of the year is, at most, a time for me to heave a sigh of relief and hope that things will be better next time. The end of the decade… well. It’s like that, but ten times over, I suppose.

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SURGERY #2: The Aftermath

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. 

SURGERY #2: Pre- and Post-Op

A lot has happened in the last two months, and it won’t all fit into a single post. For that reason, I’m splitting the story into a few posts. The first focuses on what happened in the run-up to my emergency surgery at the start of November, the second concentrates on my physical and mental recovery in the weeks afterwards, and the third focuses on my plan for the future. So without further ado, here we go…

THE STORY SO FAR…

For a few months now, we’ve been preparing for my eventual surgery. I’ve been plagued by strictures for years, with partial obstructions cropping up every so often since 2016. Since transferring to my current hospital, they’ve been much more concerned about these, and in August we started talking surgery to deal with them. They’re mostly fibrotic strictures, and the only cure for these is surgery. So I met with a surgeon and we started talking. 

We planned for a strictureplasty: an operation to widen a narrowed segment of bowel. Specifically, a Michelassi strictureplasty (also known as a side-to-side isoperistaltic strictureplasty), which is most advantageous with a long area of narrowing, or several strictures at once. I had both! I was told I’d have a diverting ostomy afterwards, to let the site heal without stool irritating the anastomoses or increasing the risk of internal leakage. I wasn’t bothered about that, it wasn’t the problem. The problem was that I just wasn’t fit enough for surgery. I was so underweight that my risk of complications – both during and after the surgery – was too high. My surgeon didn’t want to take the risk. So in August I was started on TPN, and was discharged at the end of August to continue TPN at home.

SINCE THEN

Fast-forward to mid-October and I’ve gained six kilograms, and we’re discussing transitioning to enteral feeding to lessen the psychological burden. I have an NJ tube placed, start feeds, and look set for discharge. While you’re here, they say, let’s do an MRI. So I do, and wait for a couple of days while they read and discuss the results.

Then one evening my surgeon turns up after dinner.

The MRI showed that there are two main areas of concern in my bowel: not the stricturing itself, but the dilatation (widening) that preceded it. As the bowel widens, the wall of the intestine gets thinner – putting it at increased risk of perforation. And mine was wide enough that they were freaking out. Leaving it to widen any longer would be a risk my team weren’t prepared to take. So although I still had at least 4 kg to go before I’d be at a ‘healthy’ weight, my surgeon came to see me. “I want to do it tomorrow,” he said. He must have been concerned, because ‘tomorrow’ was a Saturday.

I blinked. “Okay,” I said. There was a pause. “I mean, I’m not going to say no,” I added.

And the rest was just logistics. Consent forms, nil by mouth, et cetera. They come for me the next morning, and I joke with the junior anaesthetist, but my eyes follow the consultant as he locates vials and draws up syringes. He slots a syringe of milky liquid into a syringe driver (That looks like propofol, I think in an odd disconnected manner) and, after reviewing my consent form with me, turns to me. “Okay, Emma, I, just going to give you something to help you relax,” he says.

“Sounds good,” I reply.

And then my memory goes black.

AFTER

I wake up in a room that resembles a ward, but oddly industrial – a combination of ward and warehouse. No walls, only curtains to give each patient the illusion of privacy. Every spare space is filled with a trolley, or a computer, or a high-tech piece of monitoring equipment. This is Overnight Intensive Recovery, where patients requiring critical care in the short-term after surgery are monitored until they are moved to a ward. The details of the ward are fuzzy, not because I wasn’t wearing glasses (someone thoughtfully put them back on for me before I woke up) but because I couldn’t find the energy to care at the time. 

I remember only details: being so relieved that I was alive, and my parents were there, that I couldn’t stop talking. The lingering sedation stripped away my filter, and I said exactly what I was thinking. My dad couldn’t stop grinning at my candour. 

At night in OIR, nursing care is one-to-one. I found it comforting. My family thought it odd, but I felt safe that way. My nurse that night is named Eleni, and knowing that she is watching to make sure I didn’t spontaneously stop breathing was reassuring. Even though it wasn’t really necessary. I am hooked up to all sorts – oxygen, an arterial line in my right wrist to measure blood pressure (although that soon stopped working and needed to be removed), a drain in my abdomen, a urinary catheter, fluids and my patient-controlled analgesia through cannulae. I feel like a science experiment, an alien creature kept alive artificially. I have a third cannula in me, too, a massive grey thing in the back of my hand. I wondered what it was for, but only got my answer the next morning. 

“You lost some blood during the procedure,” my surgeon informs me, “so you got a transfusion while we were working.”

“How much did I lose?” I ask, curiosity killing the cat, as always.

“About a litre, a litre and a half,” he says nonchalantly.

Later I would wonder at his glibness. A few days afterwards, I’d do the maths and calculate my estimated blood volume. It is 2.8 litres. So that grey cannula was definitely necessary. 

The following evening the oxygen is removed and I am moved up to the surgical ward. This feels jarring, especially since I had gotten used to the gastroenterology ward downstairs. The nurses all knew me, they felt like friends. Up here I knew nobody, there were two more patients per bay, it was loud, boiling hot, and I was the youngest patient in the room by at least twenty years. I felt miserable and incredibly anxious… but I was alive. The worst was apparently over, but for me the worst was yet to come.

Hello, Hickman: Insertion + Healing

How is it that the words ‘nil by mouth’ manage to trigger the most intense hunger and thirst you’ve ever known? I’m uncomfortably hungry and, consequently, uncomfortably cranky. Every minute seems to stretch on for eternity, but also fly by like a loosed arrow. Time seems to loop back on itself like a Möbius strip, both molasses-slow and lightning-fast. I lay back against my pillows in exasperation. I have felt like this a thousand times, but I won’t ever get used to it. 

I loathe the waiting period. If anything needs to be done to me, I’d much rather it happen first thing in the morning – or that I do not know about it until immediately beforehand. Luckily, there’s only about an hour more to wait before I’m wheeled down to have my Hickman line inserted. I’m terrified, but eager at the same time. Knowing I’ll be getting sedation helps, but until the procedure is underway, nothing can quiet the anxiety in my brain, buzzing away like so many bees. 

Another Orbit

Happy birthday to me! If you follow me on Instagram (or Twitter), you’ll have seen that I’m currently in hospital. What a way to spend your 21st birthday, eh? Shackled to an IV pole in the hospital.

…and getting it back again

Happy belated World IBD Day! What better time to get back into blogging? If you read my last post, you’ll know that I was in a bad place in the early months of the year. Now? Well, not much has actually changed, honestly. I’m still experiencing the same symptoms as ever. Infliximab might as well be saline for all the good it’s done me, after six months/five infusions. Exam season is upon us, stress is oozing out of my every pore, and I have an MRI booked for June because my bloods aren’t showing any kind of improvement. By rights, I ought to be feeling as terrible as I did in February. But now things feel different, and I’m in a better position to explain exactly what was going on in my head then (and now!). I want to document everything – the good and the bad – and that starts with explaining why I’ve been so silent these last few months.

On Losing Hope

This is probably the darkest – and most honest – post I’ve written in a while. Content warning for depression and mention of death, and my apologies in advance for the florid turns of phrase I use to describe abstract concepts.

I’ve been quiet lately. Christmas came and went – I had a beautiful, rejuvenating few weeks with my family, and I was brimming with hope and optimism for infliximab and the new year ahead. January came. And, as always, exams came with it. I returned to uni, shut myself away in my flat, and studied harder than I’d ever studied before. I was exhausted. But it paid off.

And now February is here. The new term has started, the modules I was so excited about are up and running, and… it’s not living up to my personal hype. In short, I’m struggling. Really struggling.

October 2018

WHERE did this month go? No, seriously, where? If you know, please tell me. Actually, don’t, because there’s no point: we’ve reached the end of October! There’s no going back now. It’s the start of November and (yes, I’m one of THOSE people) I’m ready to get Christmassy! But first, here’s how this month has been…

Looking Back… and Looking Forward

Ten months ago, I would have said that 2017 was the worst year of my life, but that I was hopeful about 2018. Well, move over, 2017, because 2018 has officially pushed you off the podium. This has been the worst year of my life.

I don’t want to make it sound as though I consider each year of my life to get progressively worse – they don’t. 2016 was okay, ’15 and ’14 were pretty good. But all 2018 has been for me is an in-between period: the limbo between medications. We know it doesn’t work, but we don’t yet know what we’re going to do about it. In the meantime, I have to sit. And wait. Wait for the next appointment. Wait for the next test. Wait for the next results. And on, and on, and suddenly I’ve blinked and this cycle has continued for over a year.

Of course, 2018 hasn’t been all bad. Sure, the first month saw the spectacular crash-and-burn of my mental health, but after I got myself onto an antidepressant and into therapy, I saw an exponential increase in my mental health. I still have shaky days, but I no longer feel the suffocating haze of depression every day. I feel more balanced, mentally, and I smile a lot more than I did last year. 2018 also saw the completion of my first year at university and my progression onto my second with excellent grades (take that, Crohn’s, anxiety and depression!). I started to rediscover the things I used to love, like cooking and reading. I started learning to be kind to myself again. Whereas last year I just sat there while things happened to me, now I’m actually going out and doing them: university, volunteering (both as a society committee member and with my university’s peer support network), blogging, socialising, trying to soak up as many experiences as possible.

So 2018 feels like I’m waking up from a dream that lasted 14 months, and I’m only just becoming fully conscious. Instead of kicking myself for what now feels like wasted time, I’ve been inspired by Hannah Witton’s brilliant blog post to compose my own set of goals for the last few months of the year. Hannah is one of my favourite bloggers/vloggers, and reading what she wrote about gathering enough momentum to take on 2019 really resonated with me. Here’s my #2018homestretch to end this year on a high note:

MY #2018HOMESTRETCH

• Read 10 books. Reading is an excellent way for me to slow down, to force my brain to focus on something that isn’t work or stress. It’s fallen by the wayside a little bit this year, so while I can’t complete an entire Goodreads challenge, I’m going to do my best to read at least 10 new books (old books I have on my phone don’t count) before the end of the year. My Goodreads is here, if you want to keep up with how I’m doing!
• Make (and document) 5 new recipes. I’ve been experiencing a renaissance of my love of cooking now that I’ve got my own kitchenette (more on this in a later post!). So I want to start being a little bit more adventurous in the kitchen, and documenting my experiments for the blog – be they successes or failures!
• Set aside at least an hour a week for art. I’m not a skilled artist, but I find it immensely soothing, and, like cooking, I want to transform it: from a task that I feel like I have no time for, into one that’s smoothly integrated into my routine. I know I’ll feel better for it.
• Publish at least two blog posts a month. I love blogging. I do! I know, it doesn’t seem like it, given the dearth of posts on my blog at the moment. But you aren’t seeing everything I’ve written and then chucked out, or lost, or forgotten to write down. I’m giving myself free rein to stop over-analysing everything I want to put into words and to just write.
• Continue to streamline my life. As every student who has moved to/from university accommodation knows, a lot of stuff goes into living. While I wouldn’t call myself a minimalist, I know I want to cut down on the amount of objects I keep. I started off this summer with a full clean-out of my wardrobe, and I want to continue by clearing out my childhood books from my bedroom at home. After all, I’ve only got a tiny bookshelf, and if I want to read 10 more new books by the end of the year, I’ll need somewhere to keep them!

I feel good about these goals: ambitious enough that I’m excited to achieve them, but realistic enough that I actually have a chance to do so. Do you have any goals for the last few months of the year? Let me know what you want to get done! Here’s to ending 2018 on a high note – let’s smash it!

 

Photo by Emma Matthews on Unsplash.

Gastroenterology Appointment: September 2018

Okay, so, here’s the tale from my updates post that I started to write, before realising it was waaaaay too long and it would need its own post. I always think “oh, nothing much happened,” and then I start writing and actually A LOT HAPPENED. But, spoiler: we’re still no further forward than we were six months ago. How can that be, I hear you ask? Well, let me start from the beginning..,