How a nasojejunal feeding tube saved my life
“This is probably my favorite part about having a feeding tube,” I said to my mom as a phlebotomist pierced my vein with a needle. Since becoming tube-fed, I’ve become more hydrated. And since becoming more hydrated, I no longer need to be poked and prodded every time I go for a blood draw. Finally, after 32 years of struggle, getting lab work is easy.
But that isn’t the only benefit of having my feeding tube.
Gaining weight had always been a losing battle in my life before the tube was placed. With my never-ending stomach issues and inability to eat as quickly as my nondisabled peers, I struggled more than I thrived in the food department. I was so gaunt. People worried about my nutritional status as much as they understood my decision to continue eating independently. But I was still defeated nonetheless. I couldn’t foresee how I’d ever gain weight.
Then, about a year and a half ago, I was in a dire situation with my health and was hospitalized as a planned admission. That expectation was simple: they’d place a nasogastric tube, and I’d be discharged after a few days. But the doctors and nurses didn’t understand the magnitude of the situation before my arrival, and, truthfully, neither did I.
Upon arrival, I was rapidly losing weight and the ability to swallow. My stomach, turns out, couldn’t handle absorbing nutrients without me getting violently ill. And as much as it haunts me to say, my organs were starting to fail. So a last-minute decision was made to place a nasojejunal tube that would bypass my stomach, and that saved my life.
After last year’s hospitalization, I finally started to see the light. Slowly but surely, my feeding tube helped me gain 35 percent of my original weight. For the first time in my life, my nutrition levels were normal. Plus, I no longer had to worry about upsetting my stomach and counting calories. Life felt miraculously hopeful.
I recently found a column I’d written four years ago chronicling the challenges that came with eating by mouth for so many years. In it, I wrote:
“Today, I wish I could gain five pounds instead of gaining a couple, getting an acid reflux attack (vomiting, diarrhea, and feeling nauseous for about 36 hours), and reverting back to where I started. I wish I could find an equal balance between eating high-caloric foods and healthy foods that are going to nourish my body.”
After familiarizing myself with my old point of view and circumstances, I wanted to travel back in time to tell her that her wish would eventually come true, but things would inevitably fall apart in that journey. Fighting for my life during that hospitalization, losing my ability to swallow, and getting a feeding tube placed can still feel all-consuming at times. Nevertheless, I’m finally nutritionally healthy. And I’m grateful for my tube, despite the problems it may cause from time to time.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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