Researchers from the University of Pennsylvania recently published a report claiming 55% of people surveyed ranked reliance on a feeding tube "as bad as or worse than death." www.jamanetwork.com
I have had a feeding tube for over three years. Gastroparesis and intestinal dysmotility mean my stomach no longer functions and my small intestine does not absorb nutrients well. Having a feeding tube that bypasses my stomach and delivers a partially digested solution into my small intestine ensures my body can still get essential nutrients, calories and fluid. Without my feeding tube I would not be alive.
My first tube was a NasoJejunal tube (NJ). This tube went through my nose, down through my stomach and into my small intestine. Having a big yellow hosepipe taped to my face took some getting used to, but once I started to feel well again, after years of suffering from malnutrition, I soon grew to love it.
A year later I got my first permanent tube, a transgastric Jejunal tube. This went through my abdomen into my stomach and down into my small intestine. While it took a little while to get used to my body looking different, I was soon grateful for no longer having a tube taped to my face.
I'm attached to two feeding pumps 24/7. One delivers my partially digested food to my small intestine, while the other pumps in fluid. A recent deterioration of my condition means I am unable to eat or drink anything orally now and a different tube empties my stomach fluid into a bag. I also have a line that sits just under my skin to administer medication continuously through a syringe driver and twice a week I go to hospital to receive IV fluids directly into my bloodstream.
My day is filled with medical routines. I start the day detaching from my feeding pumps so my wife can set up today's feed and fluids. During this time, I administer various medications via my feeding tube, place new needles in my tummy for my syringe driver and then give my small intestine a little rest from working continuously. I then get hooked back up to my feeding pumps and change my stomach drain.
Feeding tubes and artificial nutrition have allowed me to live. Before feeding tubes, I was severely malnourished, literally slowly starving to death. I had no energy and every part of my body ached. Size 6 clothes hung off my skeletal frame and I was constantly freezing because I had no body fat to keep me warm. If I dared to eat even a small bite, I spent hours in agony. Leaving the house takes a lot more organisation and planning than before my feeding tube. I have to take spare supplies of everything just in case of an emergency and it can be really difficult finding a safe clean space to administer medications or deal with tube leaks. Hospital is my second home as I attend various appointments and have scheduled surgeries to replace my tube every six months. Sometimes my feeding tubes flip back into my stomach or become blocked which means an emergency admission to a ward until doctors can change my tube. I have a dedicated room for all of my artificial nutrition and medical supplies. Shelves fill the walls as the sheer amount of syringes, needles, bottles of feed, giving sets (tubes that connect my feeding tube to my pumps), dressings, medications and more, take up so much space.
Life with a feeding tube is different. Not being able to eat doesn't mean I still don't crave food.
Do I miss going for a pub meal or quickly nipping to Macdonalds for a burger? Of course I do.
Do I get fed up dragging my feeding pumps around with me everywhere? Yes.
Do I think that relying on a feeding tube is worse than death? Absolutely not.
Last week was Home Artificial Nutrition Awareness Week. PINNT, an organisation which supports people who rely on feeding tubes and artificial nutrition, are raising awareness of what life is like when you can no longer eat.
GIFT (Gastroparesis and Intestinal Failure Trust) supports people with gastroparesis and intestinal failure. For more information visit http://www.giftuksupport.org