jim gaffigan using a syringe to inject his wife's feeding tube

This morning, just like every morning, I got up, went to crush my meds and put them through my feeding tube, and had Facebook open on my phone on the counter as I was doing so. One of my favorite comedians, Jim Gaffigan, posted a video that I wanted to watch. I hit play, and watched it as I used my mouth to push down on the syringe.

And what I saw sent me into tears. Because this wasn’t stand-up. It hit so incredibly close to home. Ten seconds into the video, I saw myself in Jim, as he began to use his mouth to push a syringe into a feeding tube — into his wife, Jeannie’s tube (Jeannie is recovering from surgery to remove a benign brain tumor).

And in that moment, I felt truly understood.

I got my first PEG tube when I was 21, nearly four years ago now, for gastroparesis. Since then, I’ve struggled a lot — notably in accepting the fact that this is something I will likely need in some capacity for the rest of my life, and that it isn’t something to be self-conscious about. Since I’m not 100 percent dependent on tube feeds, I can hide the fact that I have one pretty well from most people.

Feeding tubes are “weird” and “gross” and “for old people” — or at least that’s what many people seem to think — and seeing a celebrity like Jim Gaffigan be so open and honest about tube feeds made me realize that maybe I don’t need to hide things. My family and close friends are the only ones I openly speak with about having a feeding tube. I’ll eat something if I’m out with friends or coworkers, and then I’ll vent my G-tube if I’m not feeling well. I live on overnight feeds so I don’t go out in public with my pump. High-waisted bikini bottoms that hide my tube have become my best friend in the summers. I haven’t been on a real first date in almost four years because I’m afraid of the day I have to explain my health to a potential boyfriend.

But today, watching that video, I can use my GJ tube either as an obstacle to living my life, or I can take my experiences with my GJ tube to educate others and help de-stigmatize the topic of tube feeding and invisible illness.

Today, I choose to educate.

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Knowledge is not the same as understanding. Knowledge is a mere accumulation of facts and data, while understanding requires a bit more. It demands insight, sensitivity, and intimacy with any given situation – and, sometimes, it necessitates you have borne a particular burden. I am convinced there is a basic lack of understanding regarding the effects chronic illnesses have on the lives of those they affect. But though I recognize this deficiency, I do not believe it must necessarily lead to discord and strife. Please allow me to explain.

You may have knowledge of my illness. Perhaps you can even define it, explain it, and list its symptoms. But many have not lived with gastroparesis nor felt its effects in their own lives. Those who are unaffected cannot fully appreciate the agony, the mental and physical torment of this punishing disease that I experience. Many have not met the struggle of being surrounded by a virtual cornucopia of foods, of savoring their tempting aromas, of longing to take just a bite, and of ultimately having to reject them. They have not faced the fear of perhaps never again being able to delight in these tantalizing treats, nor have they desperately clung to the slowly fading memory of what it was once like to partake of them.

A large portion of the population has not experienced the overwhelming nausea which comes out of the blue and which, at times, tethers you to the couch – or the bathroom floor. Nor have they ever endured the never-ending daily pain which cannot be tamed and which drives you to tears, confines you to your home, chains you to your heating pad, prevents you from sleeping. It haunts you as you lie in bed contemplating how you might face it again tomorrow. They have not watched their bodies wither away, felt the energy drain from them with the slightest exertion, nor endured the bone-deep fatigue and weakness which weigh on both body and soul.

They may have knowledge of the available treatment options associated with my condition and be able to recommend the top physicians in the field, but they cannot comprehend the depths of the disillusionment and rejection which accompany failed medications and contemptuous, cold-hearted physicians. They have not felt the condescending glare of the doctor who has accused them of imagining or inventing their symptoms in hopes of gaining sympathy, attention, or mind-altering medications, who has blamed them for the very existence of their illness, or who has admonished them for not trying hard enough to overcome its effects. They have not spent their life savings, travelled cross-country, and held out hope that a certain new doctor will take their case and finally “see” their agony and alleviate their misery, only to experience the utter devastation of having their hopes dashed when this “tops in the field” doctor turns them away with a simple, “I’m sorry, but your case is too complex.” They have not anticipated healing and relief only to discover their “miracle” medicine comes with serious risks and harmful side effects or that, in reality, it simply has no effect on their symptoms at all.

Some may “know” what is best, endlessly reprimand me for my lack of “positivity,” and direct me to “fight through the pain,” but they are not the ones who must look my child in the eyes and tell her yet again, I will miss her latest performance, school activity, or birthday party. They are not forced to deny their spouses a celebratory evening on the town or miss the family Christmas gathering because their bodies refuses to cooperate with the demands of such an outing. Many do not bear the burden of being unable to work or provide financially for their families, help with basic household chores and errands, or contribute in any productive way. Countless people do not ceaselessly relive the memories of earlier times when such tasks were easily performed and such activities were readily attended, nor do they live with the reminding surroundings of all they have lost and all they can no longer accomplish. They do not experience the guilt of constantly disappointing others.

No, they may know of my illness, but they may also lack understanding on a meaningful level.

Nevertheless, they need not wholly comprehend the full effects of my illness to offer kindness and co-exist with me in peace and harmony.  I will settle for knowledge alone, if that knowledge is unaccompanied by judgment and reproach. It is not necessary for people to intimately understand my deepest longings, aches, and needs, nor my fears and regrets, so long as they will simply offer support in the ways I desire and not in the ways they deem best. Others must merely recognize I am truly ill and doing the best I can to survive, to thrive, despite this difficult disease. People need only sit by my side, present a listening ear, believe my struggles are genuine, offer comfort, respect my choices, acknowledge my efforts, forgive me my failings, and refrain from criticizing that which you do not, and cannot, comprehend.

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Gastroparesis is a functional motility disorder that impacts the upper digestive tract, primarily the stomach, and causes a wide range of symptoms. It’s a disorder that can be caused by different factors, or be completely idiopathic. It’s a disease that leaves some people nauseous after a small snack, and prevents others from eating by mouth at all.

Essentially, gastroparesis patients have a partially paralyzed stomach, which causes a myriad of different symptoms.

When I first began experiencing the symptoms of gastroparesis, soon followed by a diagnosis and referral to a dietician, the biggest shock was realizing how weird a part food plays in our society. I had never realized just how integral it was to a social setting, or experienced being unable to partake in it, until I had my first bowel obstruction and was told that my body could only tolerate small amounts of clear liquids – provided I took a motility drug first.

Having gastroparesis has made any situation involving food, whether it’s a birthday party, a holiday dinner with my family, lunch on campus with my friends, or being asked out to get coffee, a nightmare.

It’s distressing to not be able to eat the foods I once enjoyed. Every time I’m out with my friends, seeing a movie or getting brunch, I feel anxious turning down food. I can feel, or think I can feel, people like the waitress, the teenager working the concession stand, or the barista at the coffee shop silently forming their own opinion about why I’m saying no to pancakes, or popcorn, or a brownie with my tea. My friends never fail to ask, “Can’t you just take one bite?” or wave a chocolate bar under my nose as though it will tempt my stomach into not being partially paralyzed.

Family dinners are just as uncomfortable. I initially thought that sitting at the table with my family, who are all aware of my diagnosis and my dietary limitations, would be a relaxing way for me to get comfortable being a person who can’t eat in a situation full of food.

I was wrong.

My family, though they may be sympathetic and understanding, are also painfully optimistic. Every time my brother came in from barbecuing burgers during the summer, he would make a plate for me as well. Whenever my dad brought home take out for dinner, he would offer me a spring roll or try coax me to take a bite of pasta. When my mom went to the local bakery on Saturday mornings to get bagels and rolls for our family, she would always bring home one of my old favorites: a cinnamon roll, dripping with icing.

It hurt me to see how discouraged my family would get each time I had to turn food down.

Being surrounded by food when you have gastroparesis is indescribable. It’s upsetting, and nauseating, and weirdly emotional. Watching you friends and family eat while you sit silently by, or dine exclusively on medication and meal replacements, evokes a weird kind of envy.

It makes you self conscious of the fact that you cannot eat the way your loved ones can. You start saying no to certain things, avoiding certain places, or not sitting with your family at the dinner table.
When you cannot eat in the way that society largely views as “normal,” you can feel isolated in settings where food is present.

A trend recently has been for people with chronic diseases or disabilities to challenge others to experience a moment the way they do. My initial plan for this article was to challenge you to sit through a meal unable to eat, feeling nauseous and sore and bloated…But that isn’t something I would wish upon anyone.

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January 21, 2016 at 7:30 a.m.

16 months ago, I stood at the bedside of my critically ill patient and flushed his arterial line after checking for a blood return. I reinflated the pressurized bag of saline, checked the output from his wound drains and chest tubes and dopplered his legs to listen for his weak pedal pulses that were a result of the vasopressor medications that were keeping the majority of his blood near his heart. I used my stethoscope to auscultate his heart and lung sounds. I reviewed the settings depicted on my patient’s ventilator machine and shifted the positioning of the intubation tube in his mouth. I checked for new signs of skin breakdown and redressed his surgical wounds. I watched the continuous EKG to check for any irregular patterns in his heart rhythm. Then I sat down next to him and began to record all of my findings, his vital signs and all the settings his medical equipment were set for. He was sedated, but I checked for any indication that he might be in pain. He looked peaceful, but he was barely alive. I untangled the lines from his plethora of IV bags as I watched the sunrise painting the sky outside. Before I left the room to call his family with an update, I squeezed his hand and told him I’d be back soon to check on him.

May 7, 2017 at 6:00 a.m.

This morning, as the sunrise was painting the same sky many months later, the alarm on my cell phone went off. I barely heard it from my deep sleep, but I sat up anyways. I opened up a saline syringe and cleaned off the end of a central line with two alcohol pads. I flushed the line and connected it to the IV tubing I had primed the night before. The pump played a little tune as I powered it up and initiated the infusion. I untangled the IV tubing and stretched it out to its full length so I could lay back down. The central line I flushed hadn’t been my patient’s; it was my own. My eyes began to close again, and I slept for another eight hours as my modified TPN solution infused into my venous system. The beeping of the pump woke me up in the afternoon and I lay there for a moment trying to get my body to move. I had to take my empty fluid bag down and flush my line again with saline and heparin to prevent it from developing a clot. I then proceeded to crush my pills and empty the capsules into a spoonful of applesauce. The bite of medicine-filled applesauce would be the only thing I’d eat until 8:00 or 9:00 p.m. that night, when my hunger would finally outweigh my desire to remain as pain-free as possible.

The first scenario you read took up about one hour of my day. I was working in a cardio-thoracic surgical ICU where it was my job to care for one or two patients for a 12-hour shift. Many of these patients had undergone open heart surgery and became too unstable for the surgeons to complete the surgery or to wire their sternum shut again. Those patients were sent up to our unit with something similar to sterile “saran wrap” covering their open chest until they had improved enough to tolerate the closure procedure. Some of the other patients were post-transplant or had developed serious septic infections or had recently undergone various other major cardiac surgeries. It was my responsibility to monitor their condition, watch for any decline and keep some of the sickest patients in the whole hospital alive. The second scenario you read took up about 10 hours of the time frame I previously would have been at work. I am now a patient, but I am also still a nurse. It is my responsibility to care for myself, advocate for myself and keep myself alive. My shift never ends now, but I couldn’t do it without help.

I have a homecare nurse who comes to my house every week to draw blood, check my vitals and change the sterile dressing around my central line. When I am too sick to even be at home, I have had countless incredible nurses in the hospital care for me. When I go to any number of the doctors I see, first I catch the nurses up on the changes in my condition. Every once in a while, I get to see my friends from nursing school when they come to visit from Ohio. I love hearing about their work stories and how many patients they have helped.

This is National Nurses Week and nursing has been a huge part of my life for the last six years. For four years, I worked my butt off in the nursing program at Kent State University. I completed my senior practicum in the Cuyahoga Falls Emergency Department. Then, I graduated magna cum laude and as a member of the International Honor Society of Nursing. I knew I wanted to work a high-action job and my five-year plan was to work in the ICU and/or ED until I could apply for a spot on the life flight team. I went for a ride along with the life flight team that summer, just to be sure it was what I wanted to work towards – and it absolutely was. When I interviewed for the position in the CT-ICU, I realized that was the job of my dreams (or as close as I could get until I had enough experience and autonomy to fly in the helicopters). I was over the moon when I got the job and I loved every second of it. I knew I was making a difference, and that is a feeling I have missed every day for the past 16 months. When I got sick, I kept assuming this was something minor and very short-term. Surely they’d be able to figure things out and treat me right away so I could get back to my life. If only I had been right.

During this illness, I have probably been seen by about 25 different doctors. Aside from the gastroparesis, I still have yet to be diagnosed. We know it is something rare and most likely my case is presenting oddly. Many of those doctors have let me down. Some of them haven’t even had the decency to be nice about it. But throughout all of this, I have had many, many nurses. With the exception of maybe a couple, I have loved them all, and I’ve even had a few make a profound impact on me and my quality of life. Nurses are not taught to diagnose. They are taught to care. That is one area I have not been disappointed with, and I have all my nurses to thank for that. I may not be a nurse to patients right now, but nursing has been engrained into my identity. I am proud of the profession I chose and am grateful that all my nurses caring for me chose it as well.

As a patient, I want to take a moment to thank my wonderful and selfless nurses. As a friend, I want to recognize and give a loving shout-out to my fellow nurse friends, especially our “crew.” As a daughter, I want to thank my parents for being honorary nurses during my illness when I’ve been too sick to help myself. As a former student and new nurse, I want to appreciate and thank all the amazing professors, preceptors and orienters for giving their time to shape the minds of newcomers to the profession. And lastly, as a nurse, I want to thank everyone for celebrating what we do with a National Nurses Week. I am proud to be a BSN and RN and I am grateful to be a patient surrounded by kickass nurses. Take a moment to thank a nurse today!

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Thinkstock photo via ajr_images.


“Are you hungry?”

“Do you want a snack?”

“What do you want for dinner?”

“Would you like fries with that?”

“Can I take your order?”

“Are you hungry?”

“Don’t you want something to eat?”

“Are you hungry?”

“Are you hungry?”

Food is something that is constantly being offered. It’s an integral part of social interactions, an important staple in someone’s daily routine, and a necessity for survival.

Also, food is delicious. Cooking, eating, enjoying the process and consumption of a meal with your friends or family, is fun.

But to someone with gastroparesis like me, food can often feel like a burden, an enemy, or an inescapable reminder of the reality of their health.

Gastroparesis (GP) is a functional motility disorder that affects the digestive system. It basically means that your stomach is paralyzed, and therefore cannot digest food properly – or at all. Although the symptoms and severity differ from patient to patient, a person with GP can experience any or all of the following symptoms: Nausea, abdominal pain, acid reflux, bloating, feeling of fullness, extreme weight loss, vomiting, and complications of malnourishment.

Many people with gastroparesis either cannot eat at all, and receive nutrition via a feeding tube or total parenteral nutrition (TPN), but other GP warriors are able to tolerate a small list of food. Again, this varies from person to person, and is constantly changing as symptoms change, or complications of GP (flares, bowel obstructions, etc) force changes.

Personally, I am currently able to tolerate small amounts of pureed foods (think soup, mashed potatoes, or pudding), and some solids, like animal crackers or soda crackers. I’m very sensitive to strong flavors, and cannot ingest anything with dairy, eggs, or meat in it due to allergies and an inability to digest those foods.

When my friends get together for lunch, or meet up for coffee, or go see a movie, I can’t eat with them. I can drink a latte if it has soy or almond milk in it, and I typically carry a nutritional meal replacement drink in my backpack, but I haven’t been able to actually eat with my friends in years.
It was a difficult adjustment, but my friends were understanding and empathetic. They have never made me feel inadequate, or left out. They are understanding and compassionate, which is something I am constantly thankful for.

But going into a restaurant, or hanging out with a new friend for the first time, the inevitable question, “Are you hungry?” is posed at some point.

Each time I get asked that, I get nervous. Should I tell the members of my group project, the old high school teacher I met for coffee, my friend’s mom, the waiter, that I cannot eat anything they might offer? Should I politely decline, and let them draw whatever conclusions they want to?

Should I make an excuse for why I can’t eat? Do I want this person to know my diagnosis? Is it fair for me to feel judged if I do not share that information, but uncomfortable revealing something so personal?

It’s a loaded question with no right answer for a gastroparesis patient, and for me it serves as an upsetting reminder of the limitations of my disease. The fact that it’s a question I cannot escape upsets me even more. No matter how open and honest I am, or how carefully I choose which situations to put myself in, someone will inevitably ask me if I want something to eat.
It isn’t a malicious question, but it has a malicious impact on how I view myself and my disease.

The conclusion I have come to about how to handle being asked about my dietary habits is that I can share information when I’m comfortable with it, and simply turn down food with no explanation if I don’t want to confide my diagnosis in someone. I used to come up with excuses, or order food to appear “normal,” but those behaviors only made my anxiety surrounding my disease worse.
Food is inescapable, and I do not want my disease and the consequent dietary restrictions to negatively impact how I view something as important as food.

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An unexpected but unavoidable symptom of chronic illness is uncertainty. It becomes one of the defining characteristics of your daily life: your immediate health, how long it will last, whether medications and recommended diets and alternative therapies are working, if you’ll be able to get a job, go to school, shower on your own, make it up a flight of stairs. All of these things are called into question. You go to bed at night unsure of whether you will wake up feeling rested and comfortable or exhausted and in agonizing pain. You make plans with friends, book vacations and commit to responsibilities without knowing whether or not your health will permit you to participate.

As anyone with a chronic illness will tell you, the doubt extends to your life within the hospital, and how your disease and symptoms fit into your medical appointments and emergency room trips. Doubt is as inescapable for chronic illness patients in a medical environment as it is when agreeing to a social obligation six weeks away. You doubt not only the doctors, but also yourself.

When it takes weeks, months, years of experiencing pain or nausea or whichever symptoms are associated with your disease to actually get diagnosed, you begin to question whether or not what you are going through is “normal.” You begin to wonder if you are overreacting. Surely numerous doctors can’t all be missing the same thing; maybe you were told that it’s “all in your head.”

A doctor may voice their disbelief or laugh when you offer articles from the internet you printed off to help get you a diagnosis or a treatment plan. You may be labelled as “drug-seeking,” “attention-seeking” or a liar.

This inevitably happens in your personal life as well, and following each rude comment or snide remark from someone you thought of as a friend, an empathetic coworker or a close family member, you do begin to doubt the believability of the story you’re telling.

My greatest moment of doubt happened when I was in high school. I was still a year away from being diagnosed with severe idiopathic gastroparesis, so my symptoms (extreme nausea and vomiting, unexplained weight loss, fatigue, frequent loss of consciousness, bloating, lack of appetite) were largely unexplained. My pediatric gastroenterologist had given me a questionable diagnoses of “Crohn’s-like symptoms” to explain my medical predicament to my teachers.

My parents and I anticipated my teachers and principal questioning the validity of my undiagnosed illness, and we were prepared with medical documentation when they did. The group of people I did not expect to question my health were the people I thought of as friends.
I began to doubt the sincerity of people when they told me that they were thinking about me, or asked how I was feeling. I began to doubt the severity of my symptoms; if other people could brush off my health issues without batting an eye, could they really be that bad?

Doubt surrounding my health has been an omnipresent part of my life since symptom onset. I know many other people experience it as well. Even if you doubt yourself, your symptoms, your doctors, your friends or the reliability of your body, don’t give up. Uncertainty is unavoidable, but I’ve learned to manage it by taking it one day, one moment and one task at a time.

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Thinkstock photo via Adam Gault.

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