Friday, February 9, 2018

What Doctors Do Not Tell You About Your Feeding Tube

I am a strong advocate for portraying the positives of any situation. There is no use in focusing on the negatives that cannot be changed. Despite this, I realize that maintaining an incessant happy happy joy joy demeanor is unrealistic.

As evidenced by my last post, Feeding Tubes Are a Good Thing and there are endless reasons why.

I had my first feeding tube placed at 16 years of age. Prior to that though, the prospect of a tube was threatened by my doctors on numerous occasions. Yet, they failed to offer explanations, good or bad, about the device that supposedly saves lives. I was left with, “Okay, you are starving. Here is a feeding tube. Now you won’t die.” I had to form my own conclusions and a feeding tube was the worst possible outcome. The prospect was petrifying.

All of my energy went into avoiding it. Stepping on the scale was a tear inducing ordeal. As the number on the scale decreased, I knew I could not continue in a state of malnutrition. And then I was tubed. Initially, resorting to tube feeding seemed as if I had given up. It was like I had lost the fight, succumbing to hell that meant living with a feeding tube.

Shortly after my GJ feeding tube surgery, I realized how incorrect I was. My life had changed, but it was not for the worst as the doctors previously implied. It was for the better. My quality of life had drastically improved. I was less nauseated, had energy, and my fainting and blackouts lessened. I became thrilled about life again because my feeding tube opened a world of new possibilities. I anticipated the future with excitement rather than nervous dread of the unknown.

So, I try to raise feeding tube awareness centered around the good—the positive outcomes not often spoken about. Still, an important facet of awareness is authenticity. Just as medical professionals fail to mention the positives of a feeding tube, they do not even begin to cover the challenges. It would be wrong of me to pretend that they do not exist and to claim that I did not believe in a plethora of the feeding tube misconceptions.

 I would tolerate the feedings and my symptoms would disappear.  

Food and I were obviously not working out. A feeding tube meant I did not have to rely on consuming food for survival. Problem solved, right? Such an assumption was a bit misled. In my case, the issue was not food, but my GI tract. Placing a feeding tube does not heal my faulty GI tract. It is simply a tool that makes the intake of nutrition a little easier. There is no guarantee that formula will be tolerated without symptoms.

Complications would not happen to me.

Infection, buried bumpers, tube migration, stoma burns, granulation tissue…complications are real. No tubie is immune to them.  

I would never feel hungry.

I was under the impression that I would never want food due to how ill it makes me. Despite having a feeding tube, I do get hungry and I do crave regular food. Thankfully, I will not exhibit physical signs of hunger when receiving sufficient calories through my feeds. If circumstances require an increase in calories, like if sick with a virus, hormonal influences, etc., then my stomach will start growling and I will feel hungry.

The tube stoma does not hurt after the initial surgery.

My feeding tube site, the stoma, is always super sore. There are various explanations for stoma pain. After the initial surgery, the pain in my abdomen was comparable to working out and doing lots of sit-ups. Within a full month that muscle soreness pain completely dissipated. However, it was replaced with a new pain.

The body attempts to close the new wound during the healing process, but it can never fully heal because the tube is holding the stoma open. That results in a buildup of tissue around the stoma called granulation tissue.   With the tube present in the GI tract, the body’s natural instinct kicks in. The stomach tries to digest the tube. Although the tube is held in the stoma by the internal bumper, digestion causes movement of the tube—a feeling similar to a spasm and like the tube is sucking in and out.

Healing, movement from digestion, and daily activity all contribute to granulation tissue. Granulation is perfectly normal, and some have it worse than others, but it hurts! The tissue contains nerve endings. As the tube moves, the granulation tissue bleeds and the pain increases.

By the end of the day, my abdomen is really sore!  

Eating for pleasure would be easier.

A feeding tube definitely does not prevent a patient from consuming food orally, nor does it mean that they should not try! Before I Mast Cell Activation became a factor, there were moments when I could eat ice cream, apple sauce, or drink and it would all literally pour out of my stoma onto the floor.   Leaking varies. My stoma tends to leak excessively. Adjusting tube sizes is helpful, but does not totally eliminate the leakage. It causes oral eating to be difficult. Aside from causing symptoms related to my condition, the leaking adds to the pain because the food particles irritate the stoma and causes burns from stomach acid around the site. I have a very high pain tolerance. I have endured sepsis and multiple surgeries without pain med one, but there is something about burns around my feeding tube stoma that makes me cry like a baby.

I wouldn’t mind if I were connected to a pump the majority of the day.   

The amount of time I am connected to run J tube feeds has differed depending on my health. It is rarely less than 12 hours. Typically I run feeds for 16-18 hours. Tubing, a feeding pump, and a backpack is my best friend for the duration I am on feeds. I usually accept that fate with a smile. Inevitably the tubing starts to tangle, air gets in the line, or I am restricted from an activity…and then feeling “tethered” to tubes and lines is incredibly frustrating.  

There is no doubt that my health has declined since I was first tubed. I was exceedingly more functional then. And because of that, I now occasionally feel that the pain and inconveniences of a feeding tube do not warrant the benefits. But no matter how many melodramatic just pull out my tubes and let me die moments I must endure, it is a small price to pay for being alive.

Feeding Tube Awareness Week 2018