With feeding tubes recently in the news because Florida brides are trying to crash diet, I feel like more people need to understand that many people (young and old), rely on feeding tubes to survive. I am a 25-year-old grad student my feeding tube keep me nourished, active and alive.
I have a vivid memory of a classmate of mine showing me a tube coming out of his stomach in kindergarten. I never realized what it was until I came out of surgery last year and saw a nearly identical tube sticking out of my own stomach. It was a feeding tube.
Though I have a love- hate relationship with the tube, I know that it is helping me to be able to actually feel like a person again.
My tube sits between my ribs and belly button on the right side of my stomach. It runs through my stomach and into my intestines. This allows me to bypass my pancreas and avoid the awful pain I get from eating. There are many different types of tubes, but mine is a jg tube.
I started having health problems at the end of my senior year of high school. I went through a slew of diagnosis's and multiple surgeries (at least one or two a year). I've been diagnosed with endometriosis, fibromyalgia, and now chronic pancreatitis. The medical field is really into labels and I've collected a lot through the years.
My pancreas is the reason I have my tube. It got to a point in which I couldn't eat without having terrible pain. No matter how bland the food was or how little I ate, I would always have pain after a few bites. There was no safe food for me. Even smelling foods at times made and still makes me sick.
At first my doctors removed my gallbladder. I felt better for a few months, but the pain returned and I continued getting sick. I couldn't eat much or any variety of foods, I was officially labeled as malnourished. I had zero energy, a ton of pain, and could barely function. You would be surprised at how long it takes to find out your pancreas isn't working correctly.
I never imagined that my health would fail to the point that I would end up taking a year off work (teaching and coaching).
Finally I found my amazing doctor (who specializes in pancreas problems) and he tried nerve blocks, pain killers, and pancreatic enzymes. Nothing was working to get me back to my life. Thus, my tube was placed to bypass my pancreas and allow me to have nutrients and calories without all the pain.
I completely underestimated how difficult it would be to adjust with getting all my nutrition through a tube. I struggled with the reality that there was a tube sticking out of me. I felt deformed, I felt weird, I felt like something other than myself.
I struggled daily with getting enough calories into my body. It hurt at first and it was uncomfortable to pump formula into my intestines. I would wake up sick in the middle of the night because I wasn't on the right formula. I dealt with clogs, pain and some infections from the new hole in my body.
At times, I didn't know how I could get through the week. What was I doing? How did I get to this point? My body was failing me and I had no control over it. I felt lost, but luckily I made it through the rough patches.
My parents, though stressed through all of this, have been amazing in advocating for my health and taking care of me. It's strange because I haven't been this dependent on my parents since grade school. I was always at basketball practices, camps, or babysitting. I loved being independent and living life. However, this abruptly stopped when I was 18.
I'm not sure when or if I'll ever be able to eat normally or even a full meal. I am allowed, now, to eat if I want. However, I rarely do as it causes me pain and makes me sick for a few days to a week.
I'm slowly starting to be able to participate in life again. I will start grad school in the fall and hopefully pick up a part time job.
There are so many things I wish people would realize when they see someone with a feeding tube:
1. Please don't stare, if you want to know what the tube is or what is poking out under someone's shirt, just ask. I am so much more comfortable telling someone about my tube and even showing them what it looks like. I am not shy about flashing some tube if it makes other people more comfortable.
2. If you are a nurse or a doctor, please, please, PLEASE ask me before you do anything with my tube, especially if you haven't worked with one before. The tube is attached to ME and it hurts if you yank on it or accidentally put air into my tube.
3. Please consider what you say about feeding tubes in front of others. Kathy Lee and Hooda have recently been criticized for laughing and joking about feeding tubes. They were talking about them because of the brides in Florida using them, however many feelings were hurt in the feeding tube community.
4. I'm still me. I'm not broken, I am just different. I'm not going to lie, it is difficult to try to get back in the dating world. If I try to tell a potential date about it, things get awkward. I just like to consider myself as a cheap date because I don't eat at restaurants
I've also also learned so much about life by struggling with my tube:
1. You MUST advocate for yourself. If its your health, your job, or even those you surround yourself with, make sure you fight for what you want to live your best life.
2. Your health is important! You can't advance your career, go out with friends, or function without it. You have to get your health in line to make everything else work!
3. Listen to your body. If something doesn't feel right, go to your doctor! You don't want to ignore something that could possibly be serious.
4. Our society revolves around food. It's surprising when you think about how much families and friends celebrate events with food.
5. People come and go in your life. If they can't support you when you need the encouragement, you don't need them in your life.
6. Let it go. It is what it is. You can't control the cards that you were dealt in life, but you can always control how you play your hand.
I still struggle at times being self-conscious about my tube, getting all my calories, or even struggle at times with avoiding food. But, my tube is beginning to be a new normal for me. I'm a tubie and my tube is letting me get back to life. I feel like myself -- tube and all!