I had a nasojejunal feeding tube twice before my GJ tube was surgically placed, and I’m so glad I’ll never have to have one again. I know some people have them for months with little problem and that they save lives, but for me it was unendurable agony.
A NJ tube is a long, thin, flexible tube advanced through the nose, down the esophagus, through the stomach and into the small intestine. It delivers nutrition directly into the jejunum (the second part of the small intestine), bypassing the stomach. It’s used when there’s a problem with the stomach, like gastroparesis. It’s usually very temporary, but can sometimes be used for several months or longer. In my case, it was used to test whether a permanent feeding tube was the right answer – to see whether bypassing my stomach would help alleviate my symptoms and help reverse my severe malnutrition.
The first time I had it placed was February 2013, when I was in the hospital for 10 days for severe malnutrition. I wanted to talk about permanent feeding tubes, but they scared me about it (“it’s major surgery!”) and insisted we do a trial run of a temporary nasal tube. I was so sick during that stay that I don’t remember a lot of it, but I remember parts of the week that followed. Having that tube up (down?) my nose was so excruciatingly painful that I could barely do anything. I couldn’t drink, could barely swallow, and was in so much pain I could barely think. I tried liquid lidocaine, numbing throat spray, popsicles, etc. I did do well on the feeds, though, and my GI symptoms were much better. But I couldn’t stand the pain, and after less than two weeks I pulled it out by myself (I do not recommend doing this – please go to your doctor if you have trouble with your tube!).
Even though having the tube was a success in that it proved that having a feeding tube would have helped me, I didn’t end up getting one then. I can’t really remember what happened, but I think the ball was kind of dropped. I was in and out of the hospital for the next year, including a surgery for endometriosis. I think my doctors wanted to wait longer before surgically placing a tube, to see if my condition improved, but I wish they hadn’t waited so long, because by the time it was time for the surgical option, I was too malnourished to operate on.
Trial #2 of an NJ tube went the same as the first, except that this time my doctor pulled it for me after a week of unbearable pain. I remember sitting in my doctor’s office, on the crinkly paper on the exam table, tears flowing down my face. I was so tired, so sick, so frightened. My doctor said it was time for a surgical tube, and told me to see a surgeon. It felt like a weight had been lifted from me – it was so hard, trying to get enough calories every day, trying to force myself to eat between episodes of retching, trying to stay out of the hospital, trying to make these huge decisions about surgeries and treatments. I can’t adequately explain the crushing burden of it all. Finally having a course of action made me feel so much better.
The next step was to meet with my surgeon, and to decide how to proceed. It was one of the most difficult times of my life, full of unexpected twists and turns, which you can read about here. Over time, it ended up being the right decision. It saved my life, and I’m glad I did it. To anyone else going through this, please know that it can get better, and someday I hope you can look back on it from a better place, as I do.