People expect positivity and optimism. However, I feel very real feelings and I refuse to sugarcoat them or hide them for the sake of positivity. Being an advocate and bringing awareness to different subjects, includes all sides of the issue at hand.
Let’s start from the beginning. For years, I have had issues with my GI tract, that included reflux, pain, nausea and vomiting. The symptoms became progressively worse until this summer, to the point where I couldn’t eat or drink without vomiting. It had been discovered that my esophageal dysmotility had gotten worse. When a person eats or drinks and swallows, the esophagus is suppose to contract to push food into the stomach and the sphincter keeps food from coming back up from the stomach like a door. However in my case, my esophagus and sphincter don’t work…..at all. There are no contractions and the door stays open. This leaves room for little to no digestion, reflux, and risk of getting food and fluids in my lungs.
After about two months with little sustenance, and little to nothing able to be done to heal my esophagus at the moment, a reluctantly a feeding tube was my only option. Stepping onto the scale day after day and seeing the number rapidly decrease from severe malnutrition, wasn’t a way to live. Endless kidney stones from dehydration and daily threats of fainting from my POTS being in a constant flare, was disheartening.
Obviously there are endless reasons why getting a feeding tube was a needed positive, it didn’t feel that way. After working so hard to get to a stable place nine months after my hysterectomy, it was definitely a huge blow and step backwards to need this feeding tube. It felt like I was succumbing to my chronic illnesses and the hard work was for nothing.
Everyone has different experiences with feeding tubes and even different tubes of tubes. After the two weeks worth of hospital complications (which is a whole different story), a G-tube was placed. A gastrostomy tube (also called a G-tube) is a tube inserted through the belly that brings nutrition directly to the stomach. I have a dangler tube, which has tubing that hangs down, that I attach to a syringe to give myself feeds. Now having the feeding tube left me with a whole new set of unexpected feelings and emotions.
- Complications DO Happen
I did not expect the severe pain I would have after surgery. The tube goes through my skin and through a hole in my stomach, so that feeds go directly to my stomach. The skin around my tube gets irritated and I have had a threat of infection. That new tissue where the wound is (granulation tissue), is fresh and full of nerves so it is painful and bleeds often. Healing, scar tissue, digestion movement, and daily activities all irritate the granulation tissue and cause pain and discharge. There is also a hole in my stomach, that is attempting to heal itself but can’t because the tube is located there, which causes internal pain. Even now almost four weeks post op, I still have frequent severe pain.
- Feeding Is Not That Easy
Food and I clearly weren’t having the best relationship, but a feeding tube didn’t fix that. It just allowed me to put a formula based feed through my tube to sustain nutrition, not a guarantee to eat again. My GI tract is still faulty, so even the feeds sometimes aren’t tolerated and cause nausea, vomiting and sometimes doesn’t digest. This sometimes causes the feeding tube to pop open and essentially explode formula and my stomach contents everywhere unexpectedly. I also don’t have a pump like many people with feeding tubes because my insurance doesn’t cover it. Instead of feed through a bag attached to a pole, I have to feed myself around 4-5 times a day through a syringe. It is time consuming and tediously to “eat” this way on a schedule.
- Resentment Is Real
Obviously, my feeding tube doesn’t prevent me from eating (or from trying). However, this feeding tube isn’t an eating solution. I am about 90% dependent on my feeding tube for survival. Typically, I do ZERO food by mouth (if I do, I have severe pain and vomit) and all of my daily calories come from formula feeds, only about one cup of water by mouth daily, and all of my medications need to be crushed and go through the tube. This has recently made me VERY resentful. Just because I am tube dependent, doesn’t mean I don’t get hungry and certainly doesn’t mean I don’t crave food. I MISS food. I miss the taste and I miss the comfort. I miss being able to pick up a snack. I miss being able to go out to eat as a social activity. I have been not looking forward to the holidays or traveling because I cannot take part in the joys of food and what eating represents. I don’t want to celebrate Thanksgiving and watch everyone else eat. I don’t look forward to traveling and having to take a suitcase full of medical supplies with me again. I hate the feeds. I hate the complications and “explosions”. I feel like I have lost some of my autonomy. I hate people’s reactions when they hear I have a feeding tube; I am not dying, I just have to do things a little differently.
Now, I know I am no longer malnutritioned and I should start feeling better both physically and mentally, the longer that I have the tube. The longer I have the tube, the more I will adapt and the less challenges I will have. I have to keep moving forward and get used to my new normal, so that I can get back to working hard towards my health being stable again. Although I may complain about it, having a feeding tube is NOT the end of the world. It will get me back where I need to be!