- Meet Consumers/Patients
|Newsletters: The Tube|
Though I don’t “tube” anymore, I often think back to when I did. Some might consider it a small happening, an inconvenience, a pain in the butt (or the gut), but mostly I think of it as something that needed to be done. I keep one of my old G-tubes on a shelf above my desk to remind me how fragile but resilient we are.
I believe I keep it also because my tube adventures cost me over $10,000. More than once, the balloon (used as an internal bolster) burst and the tube fell out. Consequently, I had it replaced more than once. Maybe someday I’ll auction it and recover some of the expense. Unrealistic? I guess I’ll write about it instead.
Beginning at the End
At one of my checkup visits, Dr. S— (a head and neck surgeon) asked if I didn’t think it was time to remove the tube. By then, it had become a part of me. I told her I wanted to think about it. It had become so easy to pour cans of goo down the tube. It was fast and efficient. And at that time, I had nothing else to eat but my cans of goo.
I immediately recalled when radiation started making its mark on my oral cavity and the only thing I could get down was Boost or Ensure. I hated the stuff! I think they were partially why I had decided to do the tube. Sitting across the table from me as I used my tube, my son-in-law would ask, “What are we having tonight? Meatloaf? Steak?” My can of goo could become anything I wanted it to become.
It’s a four-hour drive to and back from UNC Medical Center in Chapel Hill North Carolina where I see Dr. S—. The trip home allowed me plenty of time to think. That night I popped open a can of goo and poured it into a glass. I placed it in front of me.
End of the Tube
Three months later, in my next visit with Dr. S—, I told her to pull the tube. A can of goo went down soooo smooth and tasted soooo good (though normal people can’t stand to either smell or taste it). I told her I had stopped using the tube the evening of my last visit.
The nursing director was in the room when I told Dr. S— to take it out. He laughed and said, "Now you’ll have two belly buttons!” I had never, ever given it any thought. Two belly buttons? No one tells you these things.
You have to picture Dr. S—. She is petite (but also a larger-than-life, strong, and dedicated woman, who saved my life). She went to her cabinet and retrieved a small syringe. I pulled up my shirt and she looked at the tube, surprised that there was no place to put the syringe to deflate a balloon. I told her that the last time my balloon-type tube fell out, Dr. T— had replaced it with a fixed mushroom type—with no balloon to burst.
If it hadn’t stunned me, causing tears to run down my face, I would have been rolling on the floor laughing when the tube was extracted. I picture this petite woman grasping onto the tube, with both feet on my chest, yanking it out. Her hands were literally shaking as she forced the tube to pop out of my chest (yes, my chest; it was just below my sternum). [See comments below]
Me and Cooking
I’ve always been a utility eater, which has turned out to be a blessing. Many people feel sad or become depressed that they most likely will never again eat pizza and drink beer, or have lobster or a big piece of chocolate cake. I have yet to become depressed over not being able to eat solid foods even after being off the feeding tube.
Actually, I had always hated to cook, but now I enjoy grocery shopping and cooking or grilling. Of course I can’t eat any of it, but I love to cook for others and make them eat the stuff. During my recovery—after the surgeries, radiation, and chemo—I was watching TV and saw Oprah interview Grant Achatz, who manages the award-winning Alinea restaurant in Chicago. He battled tongue cancer and has an incredible story to tell. (Don’t we all?) I wrote him a letter thanking him for the inspiration. He actually wrote me back! Maybe he helped turn my hatred of cooking around?
How It All Began
No one tells you definitively that you’ll need “The Tube”—well, that is, you will need it if you want to eat. Yes, they mention it, but as a cancer victim, you’re in a fog. Thoughts like “I just want to stay alive” are spinning around in your head, and nothing else registers. I really gave no thought to the tube until about the third week into radiation therapy.
Radiation affects the oral cavity tissues and glands. Your saliva becomes radically reduced. Your mouth feels like the burning pits of hell. Swallowing becomes almost nonexistent. And you’re supposed to shovel food into this? Not going to happen.
I finally told Dr. G—, my oncologist, that it was time for the tube. He arranged for its insertion the following day. I signed in at the local hospital (an hour away) as an outpatient.
As it happened, the procedure was new to the radiology department. I was apparently one of its first victims. I stripped down, got into a gown, and was placed onto a bed on wheels. I was poked, prodded, questioned, and, best of all, given a warm blanket out of the microwave. They then rolled me down the never-ending maze of hallways into their den of horrors, where people were standing with their hands in latex gloves above their shoulders, looking at me with wide grins underneath their face masks, waiting to take possession of my body. Well, not really, but that’s what my mind sees.
The radiology department used the CRT to image my belly as they properly located the incision to my gut. They used a local anesthesia, so I was awake watching all the technicians. Without further ado, I exited the den of horrors with a tube stuck in my gut.
I had to lie in recovery for two hours, and was provided with a packet of supplies, including gauze, gloves, and a tiny flexible bottle brush to use to clean my tube. An independent marketer was invited in to talk at me about what I’d need to satisfy the hunger of the tube. Inexperienced and weary, I shook my head and said, “Oh, okay.”
An hour later, my wife drove me home and set me up nicely on the futon to rest. Shortly, the marketer’s delivery person came with a box of large syringes, gloves, gauze, and other goodies, along with two cases of cans of goo. The feeding of the tube began.
For months thereafter, the tube became a mundane part of living. I’d sit up, pop the top of the tube, insert a large syringe (plastic body without the plunger), open a can of goo, and pour away. That’s breakfast. That’s lunch. That’s dinner. And that’s your snack.
Redness can occur around the tube opening into your gut. Some get infections, but I never did and I rarely had any redness or soreness through the entire time I had a tube.
During radiation, my life was entirely in the hands of others. I had no clue if I was alive, dead, in Heaven, in Hell…or still on Earth. My wife mostly fed me, but on occasion my sister-in-law or daughter would.
I vividly remember watching an egg commercial on the television. I couldn’t look away, but the image of the eggs almost turned my stomach. I could not imagine eating. Chicken ads were even worse. Two weeks later, I watched the same egg commercial. Did they ever look good! Cancer treatments bring a relish of thoughts and emotions.
Today, I have moments when I wish to taste common foods I once enjoyed. I feel sad for a moment, but the sadness goes away quickly. I am more interested in having the people eating it describe how it tastes. I think of Grant Achatz waving the smell of his creations to his nose, tasting them that way. I depend on my memory to taste bacon, peanut butter, bread, and everything else. It is completely satisfying.
The real fun began after radiation and chemo. In recovery mode, I became tired of watching eggs on TV. I wanted to do! I took over my feeding. I began working outdoors. The cans of goo had gained me back fifteen of the nearly thirty pounds I had lost. Life was good!
The cans of goo were costing me about $800 a month. Many of the cans I received were so damaged, they wouldn’t even stand up. I listened to my wife arguing with our supplier on the phone. I finally said enough is enough. I searched the Internet and bought the exact same product from a reputable source online for under $150 a month.
The UPS delivery people noticed there was something wrong with me and would carry the cases into the house. I only had to carry them into the kitchen and stack them. I later learned that this placed a stress on the tube, causing it to eventually fall out.
A New Tube
One evening, I felt something slithering down my belly and dropping to the floor. The tube was no longer attached. I stood there staring, like, OMG! It was 9:00 p.m., and I didn’t know what to do. My wife, Joan, started calling all over, getting answering services, pager numbers—you know the routine. Aware that the belly button would start closing up, I stuck the darn tube back into its little hole.
There! Then it fell out again. Wait! I needed to inflate the balloon. I scavenged through all the junk delivered by the supplier and found the 3 ml syringe I needed to inflate the balloon. So, that’s what I did. (Later, I learned I needed to fill it up with water, not air.) We then taped the tube and finally got hold of Dr. G—, who set me up with an appointment for the next morning.
That morning, when I entered the room where I had originally gotten the tube, my mind started freaking out. The last time I was here it cost me $4,000. I had anticipated I would only need to get a new tube, stick it in, inflate the balloon, and walk out. That didn’t happen.
When the nurse told me to get into a gown, I said, “I need to speak with the doctor.” They ignored me until I started to really make some noise. They got Dr. G— on the phone. Standing in the outpatient room where there were several other patients, I yelled on the phone that I was not about to spend another $4,000 for a tube. He asked, “What do you want me to do?” I couldn’t think of what to do but submit.
They once again did their poking, prodding, and questioning, then rolled me into a room other than radiology. I was in a super-sized room, with two masked females in front of computer monitors, jiving to the rock music that was playing. Both said, “Hi.” There were two males alongside the table with seven—yes, seven—monitors near the ceiling around the table.
I was transferred to the table and watched as they did their thing. The doctor entered the room and washed at the sinks. As he approached, they colored my abdomen brown-yellow and turned on the monitors. The doctor jiggled a wire into my second belly button while one of the techs walked to the wall where several tubes were hanging; he selected one. He gave it to the doctor who then inserted it and walked away. One of the technicians inflated the balloon with 20 ml of water. He then injected the tube with a dye, which showed it was actually in my stomach and not leaking into my body cavity. I was transferred and rolled back to outpatient, where I had to wait two long hours.
This procedure only cost me $3,500.
Several months passed and I continued to gain my strength. I was bush hogging with a blade, shirtless, and the tube was swinging with each stroke of the blade. Joan yelled that I should be careful of the tube. Later, I went to the hardware store and picked up some eighty pound bags of concrete. I pulled them against my chest to load them into the van. When I felt a warm trickle down my belly, I looked at the sidewalk, all wet from the tube’s contents. My heart sank as I thought it had fallen out, but to my relief, it was only that the cap had popped off. The store employee just continued loading the bags into the van.
More time passed. I had an appointment with Dr. S—, so we drove to Chapel Hill. On the way, we stopped for fast food. We sat in the car in the parking lot, and I inserted the syringe into the tube and poured my goo down. Of course the fella in the truck next to me couldn’t for the life of him figure out what I was doing. To make it worse, I felt a gush of sticky goo down my belly. The tube had fallen out.
I cleaned up and stuck it back in, securing it with tape. Thirty minutes later we were with Dr. S—, who had a resident replace the tube. He stuck it in, inflated the balloon, and I was good to go.
This procedure only cost me $1,400.
I had just about had it with the tube. But now that I was educated on inserting the tube into its belly button, I searched the Web and purchased a spare for 34 bucks, including shipping.
Tube Feeding in the Hospital
Months later, I went to my primary care physician for a routine checkup. He took a chest x-ray. After, as I waited in the exam room, the doctor rushed in, asking me how I felt. “I feel great!” I said. He replied, “Your left lung is 50 percent collapsed!” Huh? The same lung had collapsed in 1972 due to a small cyst, but it hadn’t bothered me since.
So, back to the hospital. I was admitted in the evening. They brought me a tray of food, not aware of the tube. I told them, “I can’t eat that. I eat Isosource 1.5.” Oh! A nurse later appeared with a big jug of formula and a 10 ml syringe. I watched as she attempted to syringe out 10 ml of goo so she could syringe in 10 ml of goo. Like this, it would probably take an hour to finish an 8 ounce can. I tried in a nice way to explain if she disappeared, I could feed myself.
In the morning, before the procedure to re-inflate my lung, I got up to go to the bathroom. Yes. As soon as my feet hit the floor, so did the tube. I could NOT believe it. I picked up the tube and ran down the hall to the nurses’ station. Naturally, it was exactly at shift change. There I stood, with tube in hand and no one wanting to assist. Finally, one of the nurses coming on duty stuck a temporary tube in me, securing it with tape. She said this would get me through the lung procedure, and they may just insert a new tube at the same time.
I recovered from the surgery quickly, only to find that the temporary tube was still attached. They finally wheeled me down to gastroenterology, to the same outpatient room I was in when I got my first tube. Fortunately, my gastroenterologist, Dr. T—, was soon at my side. He explained that he’d insert a more permanent type tube, with a rigid mushroom flange instead of a balloon. After the procedure, he gave me photographs of the inside of my stomach. Cool! He also explained that the first tube was improperly placed, I guess to make me happy?
This procedure only cost me $3,200 (for a total of $12,134).
We asked Douglas Seidner, MD, Oley Trustee, to comment on Al’s tube experiences. He writes:
There is no perfect tube. There are two categories regarding the inner bolster (which secures the tube).
Balloon tipped tubes: Usually changed every three to six months. This is dictated by how long the balloon will last in the stomach, where acid and bile make the silicone stiff and the balloon prone to failure. If it breaks prematurely and the tube falls out, you should have the tube replaced that day so the tract does not close. Some patients can put lubrication on the tube and gently re-insert it to keep the tract open, but they should only do this with their physician’s approval as there are anatomic reasons why this should not be done in all cases. Pros: Less uncomfortable to exchange, and it is possible for a patient/caregiver to be trained to change the tube themselves. Cons: More frequent need to change (expensive, inconvenient), and if it falls out prematurely, the tract may close.
Molded bolsters for external removal: Can last for up to a year or more. I advise patients to come back for a change at one year as the silicone gets brittle and it can be harder to remove (more pain) and, rarely, can break off, which may require an endoscopy to get the part that is left in the stomach. It does hurt to take the tube out, but it is only for several minutes. This is much less than when any tube is initially placed, where the pain lasts for days. The bolster is shaped like a mushroom cap and is the size of a quarter in diameter. I explain to my patients that I have to pull modestly hard to cause it to collapse like an umbrella and come through the tract. Because it is larger than the tract even when collapsed, it will irritate the nerves and cause intense pain (10/10) for a few seconds. The pain will take several minutes to subside. Most patients say it was helpful to know what to expect. Pros: Less frequent need to change. Cons: Removal hurts, and only a clinician can change the tube.
Of note, if the abdominal wall is more than 5 cm (pull up on the tube gently and look at the measurement mark), it can be risky to push a tube back in from the outside, whichever kind of tube it is. The tract can be disrupted and the tube may not make it all the way to the stomach. If your tract is this length or greater, someone with experience should replace it and use imaging to confirm it is in the right place.
LifelineLetter, November/December 2012
2/6/2017 » 2/10/2017
Feeding Tube Awareness Week
2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week