Feeding Tube Life Hacks for the SPS Patient
My name is Meghan; also known as the Megalodon. I’m your not-so-typical 25-year-old and I enjoy competing in taekwondo, fishing, camping and adaptive snow skiing. I’m an avid outdoorsman, a 3rd degree black belt in training for my 4th degree and a 9x ATA Martial Arts World Champion. I’m a college graduate working on my master’s degree in social work and I live my life on one speed... breakneck!
My custom wheelchair/training partner, Nemo, and I are always looking to have some fun, when I’m not studying, practicing taekwondo, and running my own 501(c)(3) Meg’s Miracles to raise awareness and funds for Stiff Person Syndrome research. The name sounds completely ridiculous, but the condition is very serious and can be fatal. In addition to my limbs and torso being involved, it affects my organ function too. It’s really hard on my entire GI tract from my mouth to my colon on out. This is why I use a G-J tube. I can vent and drain the contents of my stomach to vent vomiting, but I can’t eat normally. This is where my J tube comes in handy for crushed medication and water.
Hacks for Living The Best Life with a Feeding Tube
After nearly a decade of living with a rare variant of SPS and years of living with a feeding tube, I have learned (and continue to learn!) both practical and psychological tips to living life with a feeding tube:
• First, the more you can think of your tube as a tool or a “biohack,” the better! After all, who else has direct access to their stomach or intestines through a feeding tube that can allow them to eat (even when sleeping!), take medications, or release gas/gastric contents from their stomachs? It is a unique superpower if you think about it!
• For NG and NJ tubes, don’t be afraid to “stylize” the tubes with cool stickers on top of the dressings to hold the tubes to your skin. The more comfortable you are with your tube, the more comfortable others will be, too! The same goes for surgically placed tubes even though most people cannot see them. A cool looking tubie pad can always brighten my day!
• For the surgically placed tubes, sometimes you just need a break. If your medical team considers it “safe,” don’t be afraid to disconnect those extensions for a few hours to be free of them. It can do wonders for your mental health!
• As you probably imagined, sparring in martial arts involves contact (often in the form of kicks) to the abdominal area. To best protect my tube and reduce pain from pesky granulation tissue, I wear a tighter fitting white tank top under my uniform to hold my button [a low-profile feeding tube] in place, along with some gauze or a comfortable tubie pad underneath. I also disconnect all my extensions/tubing for the practice or tournament and reconnect afterward.
• I have to travel a lot for national and international taekwondo tournaments. This often means flying, so I deal with the Transportation Security Authority (TSA) all the time. I use a pump for tube feeding, and have found that it is easiest to stay connected to the pump as I go through security. Tell the TSA agents you have a feeding tube, so when they pat you down, they know what they are feeling. I also tell the agents about my liquid medications and formula in my one bag that is exclusively medical supplies and flies for free in the U.S. That way, there are no surprises when they see a ton of liquid in the bag on the x-ray. Other than the occasional extra swabs for explosives testing, it’s nothing to be afraid of! Packing has always been the biggest challenge for me.
• I also love being in the water! Whenever I am going to be in a public pool, I generally check to see how often chlorine levels are checked or adjusted. I typically clean my stoma very well after being in the ocean, and I usually don’t swim in lakes or other standing bodies of water because I have found that many aren’t very clean; some quick research online usually confirms that. Because I have a mature stoma now, I usually don’t cover my stoma with a Tegaderm-like plastic barrier, except when I have some proud granulation tissue.Then, I’ll either avoid swimming or cover it up well.
• Living in the southeastern U.S, it gets HOT! I use ice packs to keep my feed bags from getting too warm, as I keep twenty-four–hours’ worth of feed in my bag at once.
• Because I had my feeding tube placed in the northeastern U.S, I have also had to deal with the other extreme, and have had cold weather freeze up my Farrell bag and feed bag tubing. I use hand warmers strategically placed around my bags, tubing, and extensions to help keep everything flowing smoothly. I have also heard that some people make covers for their extensions to keep them warmer. I haven’t tried this myself, but I hear it works well!
I would say as general advice to anyone, advocate for yourself. If it doesn’t look right, sound right, feel right, or deviates from your norm, speak up! This has probably been one of my own personal life-saving pieces of advice. Do you know how many times others have told me I “can’t do something” despite my illnesses or having been deaf since birth? Sometimes, it’s almost daily! And you know what? I don’t care what they think, because whether I think I can, or I don’t think I can, I am 100 percent right. As I’ve said since I was four years old, keep your chin up and charge the mountain!
Remember, your feeding tube is a tool to help sustain your body! There is nothing I cannot do with a feeding tube that I could not do without it… except for maybe keeping food down, but that’s a story for another day. The sky is the limit here! T.S. Eliot said, “Only those that risk going too far can possibly find out how far they can go!” With a mustard seed of faith, I push my wheelchair up the mountains of life one push at a time! The view from the top is pretty incredible!
*Editor’s Note: There is reference to several different kinds of feeding tubes in this article: NJ (nasojejunal) tubes are placed through the nose and pass through the digestive tract to end in the second part of the small intestine (the jejunum); tube feeding administered through an NJ or J (jejunostomy) tube bypasses the stomach, which is important for many people on tube feeding for various reasons. A J tube can be placed directly into the jejunum surgically (surgical-J) or with the help of an endoscope (PEJ). A G-J (gastrostomy-jejunostomy) is placed in the stomach with the tip of the tube ending in the intestines (jejunum); typically the “G” or gastric part can be used for venting the stomach, and the “J” or jejunal part for tube feeding. An NG (nasogastric) tube is placed through the nose and ends in the stomach.