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.
“Suddenly, a feeding tube came out on the left, directly above my belly button. An access to my digestive tract. An access that was supposed to keep me alive. But above all, an access to my identity as a chronically ill person.”
In this deeply personal account, Anna Hörster from Germany – a wife, blogger, and long-time advocate for patients with chronic digestive disorders – takes readers on an emotional journey from the uncertainty and frustration of endless medical appointments to the moment she finally receives a clear diagnosis.
She recounts the fear and hope surrounding the decision to insert a feeding tube, the moments of empathy and lack thereof from medical staff, and the life-changing reality of artificial nutrition. Anna’s story sheds light on the importance of compassionate care, clear communication, and the validation every patient deserves. Dive into her experience and gain valuable insights into what it truly means to live with gastroparesis.
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From Home to Hospital, 15 Years of Stomach Pain
A night in late November, I was still lying in bed with my husband and my dog, watching a series. Less than 12 hours later, I’m lying alone in a hospital bed. It’s 10:12 in the morning. I’m in a foreign city and my little family is on their way home. I’m scared but excited. I’ve been waiting for this day for more than 15 years. For as long as my stomach has been hurting. For as long as I was sent from doctor to doctor. For as long as I didn’t get an answer. This needs to come to an end and I hoped it would.
Less than two days later, a young doctor is standing in front of me. He is the junior doctor in charge of my case – I don’t like him. He contradicts himself and gives me meaningless answers to my questions, which so urgently need to be filled with content. Nevertheless, I feel endless gratitude as he looks at me and says:
‘The gastroparesis has been confirmed – we knew that from your previous tests. However, we have received initial indications that it is not just your stomach that is affected by the emptying disorder. Your small intestine is also paralysed. We would need to carry out further tests to find out exactly what is going on.’
Finally Validated, My Stomach Pain Was Always Real
I breathe. In and out. There’s a storm raging inside me which stirs up all my feelings, mixes them up and leaves me with a complete mess of emotions. I wasn’t delusional. I was right.
I was always right, even though doctors told me what I was experiencing daily was normal. That everyone goes through this – or at least every teenager with a uterus. I wasn’t just faking it, I was right. I wasn’t just too soft. It was valid, my pain was real.
The thought of anger, frustration and sadness arises. Why me? But before I can sink into my self-pity, gratitude comes up. Grateful that I finally have an answer. It feels so incredibly good to know that I wasn’t imagining it. Finally, validated instead of being gaslighted.
The Rapid Reality of Getting a Feeding Tube
On the first of December, I spent the day drinking 8 litres of laxative solution in preparation for my endoscopy and colonoscopy. Shortly before the end of the shift, my assistant doctor approached me: ‘We’re going to place a feeding tube during your endoscopy tomorrow. It will be placed through your nose into your small intestine. We will then start artificial feeding.’
That night I couldn’t sleep, full of fear and with tears streaming down my face. I knew that this was a possibility. I was aware that this could potentially happen to me. But it all happened too quickly. Surely, I could have said no, but I felt as though there was not much space for my thoughts.
Besides, I didn’t know whether I should say no at all. I wanted help. I couldn’t go on living like this. The pain was no longer manageable. I couldn’t feed myself enough – I needed help. But like this? So quickly?
That night, I did my best to pick up my mind, take her by the hand and tell her that we would be okay. Things couldn’t stay the way they were. So, the only logical thing to do would be to be grateful for any help offered.
‘Have you ever had an endoscopy or a colonoscopy?’ The nurse smiled at me as she began to prepare me for the procedure. ‘Yes. Too many to count,’ I replied. ‘Could you tell the doctor to put the feeding tube through my right nostril? My left one is smaller.’
She nodded with a smile, adding that I could say it too, as I would only get the sedation once the doctor had arrived. She started to tell me about her cats. I liked her – as if she knew I needed a distraction.
Empathy and Clear Information Around Feeding Tubes are Always Needed
Shortly afterwards, the doctor came in. I quickly repeated everything; I didn’t want to unnecessarily delay her time. She gave me an irritated look. ‘You won’t have a feeding tube placed. I’m doing an endoscopy and colonoscopy. I’m supposed to take biopsies, but I can’t place a tube during that.’
She still seemed irritated as she went over to the computer. She went through my medical records, skimmed the information and returned, saying: ‘Why would you need a feeding tube? There’s no reason for that.’
I started to cry. Less than 12 hours earlier, I had been surprised with the news of receiving a feeding tube. For 12 hours, which seemed like an eternity, I struggled to be okay with this decision. Now, I was faced with a woman I hadn’t even seen before, who looked at my case for three and a half seconds and slammed her unfiltered opinion in my face.
Today was my last day; I was going home. If we didn’t put in a feeding tube, I would leave the same as I arrived – with two and a half answers, but 15 more questions. The nurse touched my arm gently. She told me that everything would be okay. That we would find a solution. She started talking about her cats again – she was trying to compensate for the doctor’s lack of empathy.
I continued to cry while she told me about her cat and carefully injected the sedation into my bloodstream. The noise increased, my vision blurred, and I let myself fall into this far-too-familiar nothingness.
After the Feeding Tube Surgery
While I regained consciousness in the recovery room, I cried still. As if I had never stopped. My body started where my soul had stopped with its consciousness. In the end, one planned week turned into four.
At last, doctors invested in me and my case, saw my situation and helped. In the end, I left the hospital with a feeding tube dangling out of my stomach and the knowledge that the medication wasn’t working for me either – artificial nutrition was unavoidable for now.
I never saw the doctor from the procedure again. I got the help I so desperately needed. The answers I had been waiting so long for.
A new reality started, one which I didn’t realise how fundamentally it would change me – my being and my self-image. I also left with something more: the quiet certainty that my pain was real, my experience was valid, and my story was finally mine to tell.
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