Tube Hell and Back Again
June 1, 2005 my first enteral tube was inserted. If I had known then what I know now, I would have had a much easier year. Hindsight is amazing. Back then I had no idea what anyone was talking about, and hadn’t learned about different brands and models of tubes. I took my surgeon’s word for everything.
That first tube was a disaster. Without a cap
attached, I had to use Christmas trees from my Kangaroo bags and a knot to close
the tube off. Every time I moved, the Christmas tree popped out. It leaked all
over every piece of clothing I owned. Once, the Christmas tree popped out onto
the subway floor and I couldn’t find it. Not that it would have been too smart
to reinsert it, but it would have been better than riding 10 blocks on the
train, and another 10 blocks in a cab, with my finger over the opening,
trying to get home. My sister, who has been my primary support person, called the manufacturer. Turns out that tube was made for people who are bedridden and remain attached to a drainage bag 24/7.
I complained until the tube was replaced. By now, I knew enough to ask for a tube that would allow for mobility. The surgeon, the interventional radiologist (IR), and my Nutritionist all consulted with me Thursday night, and Friday morning the new tube was put in. When I came to, I realized it was a completely different arrangement than we had agreed upon. This new tube, like the previous one, was a J-G tube, but the ports weren’t molded as one piece. It looked like it was built out of Legos. The inner tube, the J portion, initially worked fine; however, about 3 hours after I started feeding, the Christmas tree popped out and would not reattach. I ended up pulling the J-port out of the G-port to un-kink the J-tube, but then stomach fluid started leaking from the G-port. When I complained to IR, they said I should put a dish under the tube to catch the drips while I was feeding!
Saturday morning I checked myself out of that hospital and into one ranked seventh in the country for GI problems. On Monday a new tube was inserted. I immediately noticed that something was drastically wrong. The tube’s ports were right up against the stoma, sticking straight out. They started feeding me anyway, and I threw up four times. An x-ray revealed that the tube hadn’t been inserted deeply enough; the J portion was in my stomach, which is paralyzed with gastroparesis, and all the formula was going there.
A Ray of Hope in the Gloom
The next day the tube was repositioned. Now placed properly, it worked perfectly. I could drain through the G-tube and feed through the J-tube without leaking. More importantly, after ten weeks, I could go back to work. Three months later, the tube’s balloon dissolved and the whole contraption slid out at work. I calmly told my boss, “Uh, I need an ambulance. Disinfect. Don’t touch.” I wanted to go back to the hospital that installed it, but I work in the Bronx and the ambulance wouldn’t go to Manhattan. The staff at the local hospital seemed incapable of helping me. They inserted a Foley catheter to keep the stoma open, and sent me on to the hospital in Manhattan.
Unfortunately, I couldn’t be admitted on a Friday night, so I went home with the Foley shut with a metal clamp. Back at work on Monday morning, both the tube and the stoma sprang a leak and acid started spewing. I took yet another cab back to the Manhattan hospital (I could buy a car for what I’ve spent on cabs). As I waited in the ER, the leaking stomach acid began to burn my skin. Every time I moved, more acid came out. The gauze was always soaked, and the nurses weren’t quick to change it. I still have scars from those burns in the shape of the gauze.
When the GI doctor came in that night he didn’t want to give me the tube I had asked for; he said the balloons dissolve too quickly and what I really needed was a bumper. Then, without any anesthesia or anesthetic, he jammed a new tube into my injured stoma. Echoes of that scream are all the way to Saturn by now.
Back home the next morning, when I hooked up, the J-port came off. I hadn’t even had it for 24 hours! I looked closely and found more Legos; each port was a separate piece. I went to his office, and his response was to crazy glue it back together. This lasted a week before falling apart. I stopped tube feeding at that point. I couldn’t deal with the aggravation.
Hard Work Pays Off
My nutritionist and I agreed that I needed a tube like the one I had before. I began my research in earnest. I checked every medical supplier on the internet until I found a tube that looked right. The problem then became obtaining one. The company wouldn’t sell to me wouldn’t cover it. I finally persuaded my Case Manager from the insurance company to pay for two: one for the present and a spare for when the first one fails.
In the meantime I ran into two major complications. First, over Thanksgiving I started choking on what I thought was a green bean, but turned out to be the interior end of the J-Tube. Though the port had fallen off, the tube was still there. A trip to the hospital removed all the J portions of the tube, but left the G portions intact to hold open the stoma. Second, since I was no longer feeding enterally, I had a PICC line inserted. This became infected with Staph. The Hickman that replaced it became infected with Candida, and I developed C.Difficile from the antibiotics.
Finally, at the end of February, I was well enough to have the coveted tube placed (Kimberly-Clark MIC Jejunal feeding tube). It has worked perfectly ever since. After missing another 10 weeks of work, everything is copasetic with my tube, though I am fully prepared for it to wear out.
I strongly urge everyone, both patients and support people, to educate yourselves on what’s out there and find what works for you. Learn the names of the models and makers. Learn what jargon like “french” means: it’s the diameter of the tube. You have the right to approve equipment that is being installed in your body. If your tube isn’t working properly, or doesn’t feel right, alert your doctor and don’t give up until the issue is resolved. Lastly, if your doctor doesn’t like you asking questions, he’s the wrong choice.