Get a patient’s firsthand perspective by reading Anna Hörster’s moving diary, as she shares her thoughts and feelings in the days before and after undergoing feeding tube surgery, following 15 years of stomach pain.
Read here the first part of Anna Hörster’s powerful diary as she shares her journey before and after feeding tube surgery, following 15 years of stomach pain.
16 December 2022
Before my eyes had even fully opened and my mind had caught up with being awake, I called my mother from the hospital. Yesterday I had not only endured the painful placement of a feeding tube but also managed the small logistical miracle of getting my house key to my parents, so my mother and grandfather could wait there. My husband was already on his way to pick me up – but the home care company was delivering every supply I would now need to stay alive. At that moment, I had no idea how many more organisational acrobatics I would have to perform in the years to come just to manage the weekly deliveries from my home care company and my pharmacy.
The only thing I was fully aware of was the sharp pains around my navel, where a small tube dangled, carefully wrapped in white Fixomull. Last night I slept curled up in a foetal position, silently thanking whoever had invented adjustable hospital beds.
21 December 2022
I stood in our tiny bathroom, looked my reflection in the eye and whispered, “you can do this”. In my mind, I saw my doctor explaining before I was discharged that I’d have to mobilise my tube every few days — since mine had an internal retention plate that could grow into my stomach if left still. I breathed in and out, looked myself straight in the eyes, and slowly pushed the small tube — the one that emerged from a hole just above my belly button — further into my stomach. Not even a millisecond later, nausea hit. My reflection started dancing without me, and when I came to, I was lying on the bathroom floor. Maybe I should’ve done that lying down, I thought, as my husband helped me up and back to bed. If I already faint from that, how am I supposed to survive Christmas?
Even though “mobilising the feeding tube in front of an audience” wasn’t on my holiday to-do list — unlike my childhood flute recitals or poems before the grandparents — the thought of family gatherings, Christmas songs, and food terrified me. Because all of it was tied to eating. Because everyone at the table would eat — and I’d sit next to them, tethered to my backpack by a tube, watching. You can do this, I told myself again. You have to. This is your new normal.
11 January 2023
All the way in the back of the closet was the box I’d been trying to reach for minutes. I suspected my fabrics were in there, and thirty seconds later, I was proven right. Relieved, I lifted the not-so-light box onto the table next to my sewing machine. As I began cutting fabrics into small squares and calculating how to design a pattern for a tubie pad, I thought back to Christmas Eve.
We’d been at my husband’s family. His mother had made delicious tomato soup as a starter. And while everyone moved on to the main course, I slipped away to the too-firm sofa. When my husband offered me a spoonful of dessert, I waved him off — hands full with painkillers and anti-nausea pills. Somehow, I made it through that evening.
I made it through the next one too, when we repeated the same routine at my parents’ house. But what wouldn’t leave my mind was the family photo my sister had just sent me via WhatsApp: all of us together, smiling and radiant — except for my skin tone, my sunken face, and the forced smile that wasn’t really a smile at all. God, I look exhausted. How good that this will change soon, I thought — still sewing, accompanied by the rhythmic sound of the feeding pump pushing a white, sticky, foul-smelling liquid into my small intestine.
26 January 2023
In front of me lay a mountain of tubie sets. Clips, covers, pads — red plaid, beige with white flowers, blue-green with uneven dots. The first month of the year was coming to an end, and while the world was waking from its winter sleep, making New Year’s resolutions or breaking them already — I sewed. Every moment my body and my pain allowed, I sat at our dining table and sewed. In between, I vented tubes, connected pumps to power outlets, called my home care company — which I now heard from more often than my friends — and scheduled doctor appointments. The world kept turning, and mine stood still. The only thing that could counter that stillness was my sewing machine.
So, I sewed as if my life depended on it. And though I didn’t realise it then — it kinda did. My world had collapsed at the end of December, and in January, fabric, snaps, and thread held me together. Sewing saved me — and that’s why I never stopped.
Once the stoma has healed and shows no signs of irritation, cleaning the area with water and a mild, pH-neutral soap is usually sufficient.
17 February 2023
Publish. Nervous and excited, I held my phone up to my husband. He looked at the screen, grinned, then looked at me. “I’m proud of you,” he whispered as I sank into his arms. Me too, I thought.
Ever since sewing had become my new coping mechanism, my home care nurse became my new best friend, and food something that entered me by pump pressure — everything seemed to come down to all or nothing. Until one phrase wouldn’t leave my head: dream big. So, I did. I dreamed big. Two months after my life had radically changed, I opened my Etsy shop for Tubie Sets. The dream of self-employment had been with me long before the diagnoses — but the more they accumulated, the more I said goodbye to the idea of ever working full-time or being employed. And even though I had absolutely no idea what this decision would bring, I pressed publish, and my shop went live.
What can I say? My courage was rewarded. And the fact that you’re reading these words is the proof of it.
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