Mandy’s Story

Hi! My name is Mandy, and I am a 24-year-old tubie with a GJ feeding tube. My journey began a little over five years ago. I was a sophomore in college and a collegiate athlete at the time. Before this time, I had experienced some GI issues, but nothing I couldn’t manage. During the fall semester of 2019, I noticed that I began to feel more tired, nauseous, and just overall unwell. As the weeks went on, I became sicker and sicker, to the point where I couldn’t eat. I had lost about 20 pounds, I could barely stay awake for more than 10 minutes at a time, my body broke out into hives, and different parts of my body would experience temporary paralysis. I visited my GI doctor, and he told my mom and me that I was just an anxious young woman who needed to take anxiety meds. I had never felt so alone in my life because I knew deep down that something was wrong, and no one, not even my family, believed me. I remember crying while trying to eat a bowl of white rice because I hadn’t been able to eat anything for days; my family was yelling at me to eat because they didn’t understand that something physically could be wrong since my doctor was saying it was just anxiety. Long story short, my track coach was able to connect me with a new doctor that immediately ran tests and found that I had an infection in my gut. I thought that my nightmare was going to end right there after I finished the antibiotics, but I was very wrong. After finishing the antibiotics, I noticed that I was still experiencing a lot of nausea and bloating that continued to get worse as the months and years went on. I tried so hard to continue being a functioning person in every aspect of my life, but it was growing more and more difficult. I was missing classes, had to quit the track team, and could barely see any friends or family. Even when I was physically somewhere, I wasn’t mentally there because the whole time I was trying to put a smile on my face so that others didn’t realize how sick and miserable I felt. Throughout this time, I underwent so many tests to try and figure out what was wrong, and it always ended with me crying on the way home as they told me the results were normal. It’s weird hoping and praying that something is wrong, but when you are left without answers for so long, it was the only thing I wanted so that I could start to recover and get my life back. My condition continued to deteriorate, and my ability to tolerate food dwindled. I went from being able to eat three meals a day to two, to one, to basically eating nothing as I tried so hard to get in calories through ensure clears and crackers. I would try and eat stu that I enjoy, but would quickly find myself on the bathroom floor crying and so upset that I ate something because of how sick I felt. After years of searching, I finally got a gastroparesis diagnosis, which they believe resulted from the infection I had in 2019. I thought that I would be happy finally having an answer, but that was far from how I felt because there is no cure to gastroparesis and my doctors, who suspected for a while that I had gastroparesis, had already been giving me the typical treatments and medications used for gastroparesis, which unfortunately did not work. As we continued to test medications without any luck, it was finally time to place a feeding tube because I was malnourished and barely functioning. I was absolutely terrified of the idea of getting a feeding tube and cried every time I thought about it or did research. Once it became inevitable that I needed a feeding tube, I slowly acclimated myself to the tubie world and tried to learn as much as I could without freaking myself out. What I found to be the most helpful was watching Tik Tok videos and joining Facebook groups with fellow tubies. This proved to be beyond beneficial because I was sent home from the hospital with basically no idea what I was doing. I learned about how to clean my tube, what supplies are helpful, and also found a valuable resource where I can ask questions to those who are undergoing the same experiences. I’ve asked so many questions in the Facebook groups and have received such valuable information. They helped me face challenges such as granulation tissue, tube clogs, tube flips, and so much more. The transition to tubie life was scary, but finding others that have gone through the same thing is very beneficial. One of the biggest challenges I’ve faced is the fact that prior to getting my tube, I kept telling myself that even though I was scared, this tube was going to change my life for the better. It’s been almost a year and although I have been able to gain weight, everything else has gotten so much worse, especially my nausea. I have tried every medicine under the sun and nothing has worked. I’ve also noticed my ability to tolerate things orally has declined significantly; I used to drink a lot of different clear liquids to have different tastes, but my ability to tolerate clear liquids is basically nonexistent. The worsening of my symptoms makes it more and more difficult to function every day and do simple tasks like taking a shower or doing laundry. I wish that I could put things on pause, but unfortunately, the world doesn’t stop spinning for chronic illnesses and I have to try my best to be a functioning person every day. Another challenge is despite being so nauseous and feeling so sick 24/7, I still constantly think about food and have so many cravings. There isn’t a day that goes by that I don’t think about food and how it’s so unfair that I can’t go and eat what I’m craving like a normal person. Food is such a big part of life and socializing, so it terrifies me that I might never be able to eat again. The socialization aspect hasn’t impacted me yet because I have been too sick to leave my house and haven’t seen friends in years, but if I do get my life back, I know it will be so difficult to be out and not be able to eat. Lastly, aside from all of the physical challenges that are beyond difficult to handle, the mental part is also a huge obstacle. My 20s are supposed to be a time for me to figure out my life, socialize, travel, date, and just enjoy life. Instead, I’ve spent the first half of my 20s in my room on the floor because I’m too nauseous and weak to do anything or go anywhere. I’m watching everyone around me get into relationships, get new jobs, move into apartments, travel, and so many more things, and it’s so hard to not compare myself to others and wish I could be in their shoes. My advice to other tubies, which I’m trying to abide by myself, is to focus on the little things in life that are good among all the chaos and misery. For me, that means trying to stay connected with friends and doing fun hobbies such as crocheting. Getting a feeding tube placed saved my life, but it also came with a lot of challenges. My advice is to reach out to others in the tubie community and understand that there is a learning curve to all of this. I remember writing word docs of instructions for every aspect such as flushes, feedings, cleanings, etc., and I was beyond overwhelmed by all of the information. Although it didn’t seem possible, I quickly learned how to take care of my tube, with the help and support of my amazing mom. My mom has been my rock throughout this nightmare and has been by my side at every appointment and hospital visit. She listens to me complaining every day and is a shoulder to cry on when I need it, which is basically all the time. My other piece of advice is to build a strong support system. I spent so long trying to hide what was going on because I didn’t want to seem dramatic or throw a pity party. I learned over time that it was doing me more harm by lying and that opening up would help me get the support I need.