Readers who are Tolkien fans will recognise the title of Bilbo Baggins’ memoirs in ‘The Hobbit’. Bilbo’s adventure culminated in the slaying of the dragon Smaug and the return of the treasure to the dwarves.
My own ‘adventure’ hardly compares, except that it was life-threatening like Bilbo’s. My ‘dragon’ was my swallowing difficulty. Going ‘there’ meant losing 45-50 pounds (plus corresponding strength and energy) from a stocky 5’7″ frame. Instead of slaying my dragon, it was bypassed via insertion of a G-Tube into my stomach. But I’m getting ahead of myself.
In the beginning
Early in 2011, as my swallowing problems first presented themselves, I began to eat less at meals since it simply took me longer to chew well before swallowing. I began to lose weight, quickly enough to move us to seek strategies to stop the weight loss. Smoothies and milkshakes seemed to help. By the end of 2011, my weight seemed to level off just above 140, a drop of about 25 pounds. Unfortunately much of the weight loss robbed me of shoulder and arm muscle, and as a consequence I lost considerable arm function.
Then a fast drop of 10 lbs. early in 2012 and a bad swallowing test convinced all of us that a feeding tube was the only option. Another month would pass before the out-patient surgery happened on May 16. I had lost almost 30% of my body weight and now weighed only 120 lbs! I had felt very weak the last few weeks. It was almost too late! However the procedure seemed to go very well. I went home to begin my tube-feeding life.
Each 240 ml package of formula food contained 480 well-balanced calories. The strategy was to start slowly using a pump and build up flow speed and amount to 4 packages daily (1920 calories!) at the rate of 160 ml/hour. That would still mean I would be tethered to my pole for 6 hours daily! But I had a setback 3-4 days after the surgery. I developed a raging infection in the wall of the insertion site, and spent a night in Emergency to get started on antibiotics. In 10 days, the infection was still there, so I got another 10 days, which helped but didn’t get it all. I am starting round 3 today.
During the first few weeks, there was some discomfort getting used to the new food. The formula seemed to back up and come out my nose and mouth, especially at night. Then I seemed to get a cold, or is my nose like a tap because a tube was inserted through my nose to my stomach during the surgical procedure?
All that was more than balanced by two good news events. A community dietitian visited us at home. She was a font of knowledge, and we suddenly realized that we did not have to use a pump or gravity; we could simply syringe the food in – we were already using the syringe to flush the tube with water before and after each feed. The idea was so simple we had overlooked it! Now we were not only down to under ½ hour per feed, we were once again mobile! The second good news event was a weigh-in at my GP’s office on June 14 – 135 lbs. I had gained 15 lbs. in the first month with the G-tube!
Some strength and energy have shown hints of returning, especially in my neck and in my arms. A community physiotherapist has just done an assessment, and will help me gain strength where I need it most. My goal is to get back on my recumbent tricycle! If I make that goal, the rest will take care of itself. There is nowhere to go but up!