Last weekend, I woke up with a stabbing pain coming from the site of my jejunal feeding tube. My tube has caused pain and countless infections over the past three months. I’ve been told to “give it time.”
I have cried and tried to talk myself into managing it at home. I have prayed that I would not have to go to the ER again. It was beginning to feel routine, as if severe pain were normal. I have had to adjust to medical conditions and many new normals, but I did not sign up for unmanageable pain.
I have had conversations with myself about my feeding tube for months. I have gone through the pros and cons of having it removed. I have talked with my therapist, dietitian, and primary doctor about what it would look like not to have it anymore. This past month, I gave tube feedings my best effort. I pushed through a 10/10 pain level by taking medication that only got the pain down to an 8.
It was hard for me to see the pros of having the tube when I was only able to tolerate minimum caloric intake. My doctors said to “see how it goes” and “give it time to heal.” But I knew that three months post-op should have been sufficient for healing.
Instead of healing, there were infections, hospital stays, and bouts of inflammation. I was being put on antibiotics at least once a month. The pain when I would try to take in liquid nutrition was so severe that I wanted to stop taking in food orally.
I started to focus on the quality of my life and what was important to me. I decided that I don’t want to live the rest of my life in pain. I don’t want to rely on medications that make me so tired I can barely focus on things that are important to me.
I decided to have my feeding tube removed to improve the quality of my life.
At 28, I want more than a few hours of sleep every night. I don’t want fatigue leading to worsening mental health and depression. I don’t want pain to prevent me from going out with my friends on a Friday night. I have been managing my discomfort just enough to get through each day. I have been relying on distractions to numb myself from my own reality instead of taking part in it. I have been missing out on my life.
Being constantly anxious about my pain level detracts from my quality of life. The focus is on how much pain I can tolerate without medication to help me sleep through it. I have been trapped in a cycle of pain and the only way out is to remove the source of the problem.
This was a hard decision, but I am happy and at peace with my choice.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.