Hospital stay with chronic illness

When the prep team rolled me toward the operation room, I cried. I didn’t cry because I was about to go under the knife. It might have been denial, but the laparoscopy didn’t scare me.

I cried because I was in a room with four other patients. I cried because of the man in the bed next to mine who snored the sleep-apnea way, the way where they stop breathing for a while and then suddenly gasp for breath.

I cried because the nurse who asked me about my diet didn’t even know what FODMAPS are.

But, let’s start at the beginning–or at least with why I ended up at the hospital.

That morning, I woke up, and I was fine. I climbed out of my loft bed and went into the living room to work out. I unrolled my yoga mat, set up my computer.  Like every morning, I had to interrupt my setup to go to the bathroom (thank you, IBS).

Moments later, I wasn’t fine.

Cramps in my abdomen made me curl up, worse than any period, worse than any bout of bloating from my irritated bowel, worse than… anything. I rocked around on the couch for a moment, hoping that it was gas, hoping it would pass, and I’d be fine. I wasn’t. My entire abdomen, but especially the right side around my appendix, hurt like hell.

I woke my husband. I needed help.

He called the emergency line. They insisted on talking to me, though they could barely understand me through my groans of pain. And yet, they made me wait.

Take two paracetamol (the miracle drug prescribed for anything and everything here in the Netherlands) and wait for the doctor’s office to open, they said. And I waited.

I took my pain killers and suffered. When the doctor’s office opened, I called. I told them I was in more pain than I had ever experienced, including the time they placed my first IUD without painkillers. And yet, they made me wait.

When I wobbled into the office across the street, three and a half hours after calling the emergency line, they made me sit down in the waiting room. Blood sample. Urine sample. Groans of pain while the doctor pressed around on my abdomen.

”Look,” he said in his usual uninterested tone that barely suppressed the fact that he didn’t believe I was in serious pain. “There’s no infection in your blood, but we found a bunch of stuff in your urine.”

When I wanted to know what he found, he told me that it wasn’t important. “It’s more important to get you to the hospital right away.”

Not important enough to arrange for transportation. No. I took an Uber to the emergency room. When the ancient Uber driver dropped me off on the wrong side of the hospital, I asked the security guard how to get into the emergency room. I told him that I needed urgent help and he said to me that he couldn’t help me. I walked around the hospital, alone and in pain.

Slowly, oh, so very slowly, I managed. Thank you, paracetamol.

I told them I was there with suspected appendicitis and that my doctor had called ahead. I told them I was in pain. And yet, they made me wait.

After a while, the nurse came. Blood pressure. Blood sample. Urine sample. Starting over.

By now, it was past lunchtime, and I hadn’t eaten anything since dinner the night before. I also wasn’t allowed to drink in case I needed surgery. And yet, they made me walk around.

I walked into a temporary room with a bed. When I immediately lay down on it, groaning in pain, I was given more, more potent painkillers.

Skipping a meal or two or three might sound easy to you, but I was constantly scared. Skipping meals with IBS (or just delaying them a tiny bit) means stomach cramps, pains, and nausea. For months, I’ve stuck to my perfect schedule to have as few IBS issues as possible. From those months, I knew what even missing dinner by an hour did to my stomach, and at that time, I had skipped two.

A doctor showed up, asked the same questions a fourth time. We’ll be right back with the results, she said, and I waited.

Much after the promised 30-minutes, a very friendly guy who didn’t speak a word of English rolled me toward radiology. An ultrasound later, the first actual answer.

My appendix was fine. My ovary wasn’t. It was swollen with what looked like a pretty huge cyst. The doctor also saw free fluid in my abdomen. So, to the surprise of the ER doctor, he took me for an MRI.

I enjoyed the distraction of learning about the MRT, and the technician was excited someone was interested.

They returned me to my room, then pushed me into a different room. Gynecology. I guess this meant that they had found something, but no one told me anything. I was alone, in pain, and I waited.

After skipping my third meal, the gynecologist finally showed up. He asked the same questions again (for the fifth time, I think), examined me again. When I jumped back up the chair, he realized how much pain I was in. I get it. It’s hard to judge when I feel like shit. IBS has made me great at bearing pain. I look completely fine to most people on most days. I barely ever am.

Remember the first video on my channel after pausing it for a year? I filmed that with stomach cramps. The second? Bloating. The third? Stomach, again. I’m used to it. I am missing things often enough when only staying home on my worst days. I have learned to smile and joke through the pain. I am not fine.

The doctor showed me my ultrasound images, and I appreciated the distraction of learning more than I care to admit. He went to discuss with the surgent on-call and came back soon after to declare that I needed surgery–that night.

I was rolled into an actual ward. I had been scared of a double room. There were four other beds. Five people, one room. I felt my anxiety rush in. Only an insomniac can understand how much the idea of sleeping in a room with not just one but four other people scared me. I don’t even share a room with my husband. I sleep alone. Always.

My husband was let into the ward for a few minutes (a nice exception from my now-favorite nurse) to bring me a few items.

”It’s time,” they said, much too soon after he arrived, and he had to leave again. Around 8 pm, so 12.5 hours after I called the emergency line, it was time.

And still, I was more worried about sleep and food than getting cut open.

I had to change into one of those weird hospital gowns that are open at the back, thankful that it wasn’t the butt-displaying kind. They rolled me toward the operating room. Up? Down? I don’t know. All I remember is elevators.

I was crying and they assumed I was worried about the surgery. “Don’t worry,” they said. “It’ll be fine,” they said. “It’s just a minor surgery,” they said. “I don’t care about the fucking surgery,” I snapped. I apologized for snapping, was assured it wasn’t an issue. “I don’t even share a room with my husband,” I kept crying.

My favorite nurse (seriously, she deserves a raise, no matter how much she makes), put her hand on my shoulder. “Don’t worry, I’ll figure something out. I’ll get you your own room.”

I was more grateful than you can imagine. I don’t think I’ve ever been that grateful. With surgery looming, I had clung to the fear of sleeping in a room with strangers. I was promised a room to myself. I was thankful.

It didn’t feel real when they moved me onto the table.

It didn’t feel real when they pushed in the anesthesia.

All I cared about was my preoccupation sleep (now solved) and food.

The post-op popsicle had pineapple juice in it. I still ate it.

Less than two hours later, I woke up in a pretty  room with a lot of pillars, still pretty groggy from the narcosis. I was handed a popsicle. I had to concentrate hard to read the label. Pineapple juice. I was too tired to care. In my defense, i hadn’t eaten in more than 24 hours at that point.

It didn’t matter. I was the poster-case for post-op nausea and it didn’t stay down long. As soon as I got to my (yes, my!) room, I had to ask for a puking tray. Yay, me.

The nurse I had started to appreciate so much, found me some rice waffles (“You can eat those, right?”) and a banana. I don’t think I’ve ever been so happy about bland rice waffles.

It was a long night without sleep. Even with all the painkillers and the remainder of the anaesthesia, I couldn’t get much rest. The actual wounds were almost unnoticeable, as long as I didnt move too much. The gas was making almost my entire body living hell. In case you don’t know (I didn’t…), they blow up the abdomen with CO2 at the beginning of the laparoscopy to have more room to see and maneuver. That gas then presses onto, well, everything. My shoulders hurt. My neck hurt. My head hurt. My rib cage hurt like hell. My stomach was bloated like I was six months pregnant. I mean, I look pregnant a lot of the time, but this was a new level.

The people in the shared room really dodged a bullet. I moved the bed up to sit upright, ease the pain. I moved the bed down to get some rest. Up. Down. Up Down. An endless cycle. At 4:30 am, I asked for more painkillers and a second blanket. I was cold, alone, and in pain.

I was counting down the minutes until breakfast, hungry, thirsty, and in a shitton of pain and discomfort.

Hospital food is bad. IBS makes it ten times worse.

We all know the shitty reputation hospital food has gotten over the years. I always thought that was exaggerated, as the only hospital I had ever been to had excellent food. Seriously, it was so good that our school ordered the lunches there. It was pretty good for school food. It was excellent for hospital food.

The breakfast helper, a young woman, came in with a tray and asked what I wanted to eat. Someone had left notes but they didn’t make sense, she explained. Someone had googled my diet the night before and written down some pretty random notes. “No gluten, no lactose, no broccoli, no cauliflower.”

Clearly, someone had tried but given up pretty quickly.

Sure, if I avoid gluten, I avoid a lot of things containing fructans, so that’s a start. Technically, gluten isn’t the issue. I can drink beer without problems and beer has gluten. It’s the fructans that make my life hell.

Sure, I don’t digest lactose, broccoli, or cauliflower. I also can’t eat onions, garlic, apples, pears, and a million other things.

I’ve been on a very strict, very restrictive low-FODMAP diet for a few months now and even I still have to look up a lot of ingredients in the Monash app. Trying to summarize it in a simple list is close to impossible.

If you google it, you’ll find a million attemtps to do so but most of those lists are either incomplete or incorrect (or both.) belive me, I know. I used to trust them.

I ended up with a gluten-free cardboard-like bread with a bunch of borderline ingredients I would usually avoid, two boiled eggs that were too hard even for me, and some strawberry jam. The cardboard-bread was one of those check-all-boxes breads that does none of them well. Vegan. Check. Gluten-free. Check. Sugar-free. Check. Low-sodium. check. Tasteless, gooey? Check, check, check.

I can’t even tell you how I digested the meal, as my stomach was so bloated and painful  that it would not have made a difference. I can only tell you that it wasn’t satisfying. It didn’t make me feel like I had had breakfast. I was hungry but the idea of eating one more bite, no thank you. I’d be home for lunch, I had been told.

For the next hours, I tried my best to speed up my release. The doctor the night before me had said I could go home in the morning if there were no complications. No complications were my goal.

It was still hours before the day-shift gynecologist came to see me. And when I was finally cleared to wobble out of the hospital (yes, on my own feet), the lunch team was popping in to clear my lunch.

No, thank you. I am eating at home.

Kate Hildenbrand

Kate Hildenbrand

Kate Hildenbrand is the writer behind the essays here, author of fiction novels, the creator of the Kate Hildenbrand podcast, and a student of marine ecology. At least, that's her on the surface.