Eating was never easy for me, but the few foods I enjoyed I eating, I certainly took for granted. As a kid I was always picky, I survived off mac&cheese, plain bread and goldfish crackers — but I was just picky. Early in my childhood I developed reflux and lactose intolerance, but if I took medicine, and enzymes if I ate dairy, I was fine. There were few “episodes” that I can remember, they were so infrequent that I always chalked it up to being sick or something I ate disagreeing with me. Nowadays if I eat, I have a complete autonomic nervous system reaction — whether it’s a single grape or a whole sandwich. I’ll spare the details, but each time I eat I am incapacitated by pain, nausea and the inability to maintain my blood pressure, breathing or heart rate. Once past that point, my body just doesn’t digest or absorb anything. Yet, it’s still a mystery.
The first GI doctor I saw referred me to a psychiatrist, it was all in my head. The next gave me a stream of diagnoses, dysphagia; SMAS; gastroparesis; esophageal motility disorder; dyssynergia; severe malnutrition. I was rapidly losing weight and becoming malnourished, which led to my first feeding tube, a trans-gastric jejunostomy — a
tube going through my stomach, into the second part of the small intestine (jejunum). I chose this option because I couldn’t tolerate anything in my stomach, but this tube didn’t last very long. It was stiff and painful, even my shirt rubbing against it caused extreme, sharp pain. We switched it out for a low-profile gastro-jejunostomy button (GJ Button). The GJ button had two ports: one so I could access the stomach and one for the jejunum. I loved my GJ button, but it had its own
problems. My body kept trying to reject it, pushing the tube out of my jejunum into my stomach, causing me to vomit all my feeds. This happened three times in three months, each time resulting in a 2-4 day stay in the hospital, with no nutrition, waiting for interventional radiology to change it. The bigger problem we encountered is that I struggled to tolerate any of the formulas we tried. No matter the formula, the rate (speed of feeding), or duration (length of feed), my body would max out around 800 calories. Each time I would start to make progress towards my goal, there would be a problem with my tube and I’d have to start all over again.
The feeding tube itself wasn’t enough to help me maintain my weight or nutrition. If you can’t eat by mouth, there’s really only two other options: enteral (nutrition via the GI tract) or parenteral nutrition (nutrition via veins). The next step for me was TPN (total
parenteral nutrition) which brought a new surgery and a new tube. I had a line put in that goes through a vessel, into an artery and ends inside my heart; this is where my nutrition goes. TPN was a rough start, and still a huge struggle. Shortly after getting my Hickman, my body decided to become allergic to the plastics in my GJ tube — which is one of the weirdest things I’ve ever experienced, but beside the point. The decision was made to remove the tube all together and rely solely on TPN. I’ve maxed out again around 850 calories, this time with TPN. Each time my formula changes I go through a whole cycle of not tolerating it, losing weight, getting sicker and we go back to the original formula. Still, it’s not enough a new tube will likely be in the near future.
What we’ve gathered through intensive testing is that somehow food is triggering my nervous system to react as if a foreign body is taking over. It’s almost like my body is trying to “play dead” and hope the threat goes away, instead of digesting. I have an autonomic dysfunction workup with neurology at the end of this week, and depending on those answers we’ll move forward with the next step on the never-ending battle to feed my body.