8 Myths About Feeding Tubes

Most people will go through life without ever having to deal with a feeding tube; they won’t have one themselves nor will they have a loved one with one. However, there are over 300,000 people living in just the USA who have feeding tubes—this includes children and adults of all ages and varying conditions.

A lot of people don’t know anything about feeding tubes and some have the wrong idea about them, so as part of Feeding Tube Awareness Week, I want to clear up a few myths and give you some information about living with a feeding tube.

MYTHS ABOUT FEEDING TUBES:

  1. Feeding tubes are only given to people who are dying.

Majority of people who have feeding tubes are actually using them to survive! Our feeding tubes give us the nourishment we need to function. Yes, you often see them on TV keeping comatose patients alive until they are taken off of life support and sometimes cancer patients or high risk premies have them, but, more often than not, they are given to people who need supplemental feeding or full feeds to continue living. Some babies use them starting as newborns and are on them for their whole lives while others only need them temporarily, and some people get them later in life when a medical condition causes them to be unable to consume nutrients on their own.

  1. Feeding tubes are only for people who are underweight.

I have gastroparesis and generalized gastrointestinal dysmotility – my stomach and intestines do not process food—and yes, I am underweight. That said, some people with the same condition gain weight due to their bodies going into starvation mode and hanging onto every calorie while converting sugar and carbs into fat. You can be overweight and malnourished. That is a medical fact. There are also lots of individuals out there who have swallowing disorders, food allergies, and other conditions that make them not have enough oral intake, but again they do not necessarily have to be underweight, they may just not get in key nutrients, proteins, fiber, fats, etc. No matter what your weight, you need adequate nutrition, so yes, no matter what your weight, you can require a feeding tube when not able to intake adequate nutrition orally.

  1. When you have a feeding tube you can’t eat.

Many people who have feeding tubes are only in need of supplemental feeding, meaning they eat orally, but not enough to stay fully nourished, so they do feeds just to cover what isn’t taken in orally. You can still eat when you have a feeding tube. There are many people who have restricted diets or are only able to take in liquids and require more nutrition via tube and then there are others who cannot eat at all. Even people with gastroparesis sometimes have a “safe food” or two that they can tolerate in small amounts, or they’re able to suck on candy, drink some gingerale, etc. It doesn’t invalidate anyone’s need for a tube, each tubie and their doctor figure out the best individual plan for tubie needs.

  1. Only babies and the elderly need feeding tubes.

A lot of people think of preemies and the elderly when they think of feeding tubes. In reality, there are an endless number of conditions that can cause a temporary or permanent need for a feeding tube. Some of these conditions are prematurity or failure to thrive, neurological or neuromuscular conditions, cancer, digestive disorders (like gastroparesis), Down syndrome, swallowing conditions, eating disorders, and many more! People of all ages, genders, sizes, sexualities, races, and health histories can have feeding tubes. You can also have a tube for only a few months, a few years, or you can need one permanently. Each person’s journey is unique.

  1. Feeding tubes are a scary, bad thing.

People often think of tubes as being scary or bad, but to many of us they are what give us our life back. Being malnourished and dehydrated all the time is exhausting and dangerous, so having a feeding tube that allows you to stay nourished and get some energy and strength back is such a relief. No, it is not an easy thing and it is not what most of us want or ever imagined for ourselves, but it is a lot better than starving to death, which is what would happen to many of us (myself included) without the tubes.

  1. Feeding tubes are an easy fix.

Feeding tubes are a lot of work and they aren’t an easy answer for a lot of us. I can only speak from personal experience as someone who got her tube as a young adult with a chronic gastrointestinal condition, but my tubes have caused many trials and tears, lots of pain, and little weight gain, but I am alive and I can’t confidently say I would be here without the tubes. This past year I went from one tube (a GJ) to two separate tubes (a Jtube and a Gtube), that surgery was complicated and recovery was brutal, Ive been in immense pain for most of the last 4 months since surgery. The body doesn’t always like having foreign bodies permanently lodged into your organs.

7. Feeding tubes put an end to your symptoms

A lot of people think that once someone with a digestive condition, or other conditions that cause malnutrition, get their tubes, they start to feel automatic relief from symptoms. Tubes are incredibly helpful and they do help many people get to a point where they can function at a much more “normal” level as their nutrition and energy levels improve. That said, many of us still deal with daily symptoms like nausea, pain, bloating, constipation and/or diarrhea, vomiting, fatigue, etc. Living with feeding tubes is only part of the treatment for many of us; they are life saving, but they aren’t the only treatment or the cure to those of us who have chronic conditions that cause us to need them.

8. You don’t experience hunger when you have feeding tubes.

Many people with feeding tubes still experience some degree of “hunger pains,” some have true hunger while others are experiencing spasms that mimic hunger, but it’s normal to feel hunger when you aren’t filling your stomach up with solid foods all day. There are so many conditions that can require use of a feeding tube, some of them have nothing to do with the function of the stomach (food allergies, swallowing conditions, FTT, eating disorders, etc.) so these patients are much more likely to feed into their stomachs (gtubes). They are also likely to experience hunger between feeds. Individuals with conditions like gastroparesis (stomach paralysis) and other digestive conditions may feed into their intestine, skipping the stomach completely. Some of these individuals experience hunger while others do not. Tube feeds do not always stop hunger and definitely don’t stop cravings. Some days it can be hard to avoid “real people” food.

 

Life with a feeding tube is not easy, but they are life saving and I wouldn’t be here without mine.  Feeding tubes are nothing to be ashamed of, if you have a tube, be proud. Advocate and spread awareness for yourself and for your fellow tubies.

I hope I covered all of the basics, but if you have anymore questions please don’t hesitate to ask! Feeding Tube Awareness Week is all about spreading awareness, sharing knowledge to help work towards more research and answers for the future, and supporting one another, tubie or not 🙂

 

Keep following the blog this week for more posts on Feeding Tube Awareness Week as well as a special video and information on how you can help the Newbie Tubies Project!

Brain Fog

So I haven’t posted a blog in a couple of weeks and although I’m sure in this busy season of life most of you haven’t even noticed, I decided to give you an idea as to why it is that I haven’t been posting.

The last few weeks – or really the last couple of months—have been really challenging for me health wise. Winter has always been my worst season, especially for my gastroparesis. I’ve been spending anywhere from 16-22 hours in bed every day, my pain and nausea levels have been through the roof, and I’ve been having migraines literally every day.

Aside from being in a major flare up of all of my physical symptoms, I’ve been struggling big time with my brain fog; that’s what I want to talk about today. When I tell people I have this elusive symptom called “brain fog,” they often just blow it off and think I simply mean I’m tired, lazy, or forgetful. But brain fog is a real symptom of my condition(s) and it has seriously affected my life since getting sick.

The medical term for brain fog is cognitive impairment. The most common symptom, and the one I struggle with the most, is difficulty with word finding. Essentially, I know exactly what I want to say but I have no idea what words to use to say it. I forget simple words used to form sentences, names of objects, places, and even names of people. I often have trouble forming sentences and finishing thoughts. This makes holding a conversation — or writing a blog! — very difficult at times.

Other symptoms of brain fog include short-term memory loss, decreased concentration, and fatigue especially after mental exertion. For example, when I am reading a book I often find that I have no idea what the page I just read said. Although I’m sure that many people find they have this problem, its not because I was day dreaming or because I don’t like my book, its just because my fatigue and my fuzzy brain can’t keep up. I also couldn’t tell you the name of the book I’m reading right now if my life depended on it nor could I tell you the names of my favorite movies, books, or often even my favorite actors or authors.

These symptoms make school extremely difficult for me and for many other patients who live with POTS and other conditions that cause brain fog. Imagine trying to write an essay (hopefully you can find words in your fuzzy head) on a book you can hardly even remember reading. It again also makes conversations hard because when people ask me simple questions like, “Who’s your favorite actor?” or “What movies have you watched recently?” I often have no good answer for them when I’m put on the spot.

A few of the other symptoms of brain fog include difficulty multitasking, blurred vision, headaches, and difficulty working with numbers. Not everyone has all of the symptoms and there are others I didn’t mention, but now you have a general idea! Research states that up to 96% of patients with my form of Dysautonomia have brain fog.

My brain fog gets worse on days when I’m more fatigued or have over exerted myself (which doesn’t take much!). It is also made worse by certain medications that have side effects like drowsiness or lightheadedness. When I’m tired and having a conversation with someone who doesn’t know about my condition and how it affects my ability to find words, I can get extremely flustered and overwhelmed.

I used to be extremely articulate and I had a great vocabulary so it can be weird for me to talk to someone who knew me before I got sick because they often aren’t aware of how my condition affects that part of my brain. Brain fog is an extremely frustrating symptom of Dysautonomia and it is so much more debilitating than one might think. I know my brain function is in there somewhere, but it often hides and doesn’t work as well as I’d like it to.

I’ve learned to cope with brain fog, but it has taught me that you can be robbed of any part of yourself at any point in life, whether it be your vocabulary, your ability to form sentences, your memory, your ability to consume food, your ability to walk, your ability to see, etc. There are a million things we take for granted each day, and the only time you will truly start to look back on it is when you lose one of these things.

I know I say it all the time, but I continue to encourage you to take nothing for granted and love others unconditionally. Don’t judge someone before you know their story. Brain fog is a real symptom and it affects me every day. Many people don’t believe that, but that’s just because they’ve never walked a day in the life of someone living with it.

 

 

 

Chronic Migraines; More than Just a Headache

When I think of my migraines I picture the New Years Eve ball drop and the huge build up to the 60 second count down to when the ball drops and everyone cheers, people kiss, and confetti flies. Well picture that except every day with chronic migraines you live with that 12,000 pound ball in the back of your head just counting down until the next wave of pain comes.

But the build up to this moment isn’t Ryan Seacrest and champagne and glittery 2k17 glasses, it’s ringing ears and spotty vision, neck pain, nausea, and all sorts of other symptoms that come along with migraine auras. And then the ball drops and the pain hits full force and you can’t look at any lights or be around any noises, you just lay in a dark room for hours on end taking emergency migraine meds and pain medications (that may or may not help) and waiting out the pain. There’s no cheering or kissing and no confetti, just more nausea, light sensitivity, pain, weakness and fatigue.

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A pretty typical look for me; ice or heat on my head, a mask on my eyes, and my dog cuddled up right by me. (attractive, right?) I actually brightened this photo so it was more clear, but I stay in a dark room almost all day to prevent migraines.

The problem with these migraines is that they can last for days and sometimes the pain comes and goes so you never know when it’s safe to leave the comfort of your safe space. Will sunglasses be enough to save you from the light? Will the meds last long enough for your outing? How many hours (or minutes) do you have before the pain hits again?

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I never leave the house without my sunglasses!

What people don’t understand about migraines is that they aren’t just a headache. They’re a full body experience. They affect your head, your eyes, your neck and back, your stomach, your muscles, and your overall well-being. The symptoms for one person’s migraine may be different than the next, and your migraine today may be different than that of tomorrow.

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Migraines aren’t pretty; they leave me in bed for extended periods of time and often asleep more than I’m awake.

Migraines can be completely debilitating for many people, both young and old. They can lead you to be bedridden for days at a time and cause you to miss extended periods of school or work. You often can’t look at a phone or computer screen, read books, or do much of anything during the worst parts of a migraine, so they are extremely limiting. There are many treatments for migraines, but they don’t work for every body and it takes time to find the right treatment for you.

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Botox, anyone? Yes, botox can be used to treat migraines! It can also be used for gastroparesis!

When someone says they have a migraine, don’t brush it off like it’s just a headache. Migraines are a serious condition that affects a large portion of the population. Chronic daily migraines are less common but even harder to manage. It’s important for someone living with these conditions to do what they need to in order to take care of themselves.

Migraines are more than just a headache. Be aware and be compassionate; though the pain may be invisible, the suffering is tremendous. Small acts of kindness and care to those who are suffering are such a gift.

Here’s to the only ball drop of 2k17 being that in NYC.

Cleveland Update!

Here’s what happened in Cleveland!

On Tuesday the 15th we were in Cleveland to see Dr. Cline at Cleveland Clinic and follow up on my smart pill test. For those who don’t know, the smart pill is literally a pill that you swallow and it records pH, temperature, and pressure throughout the GI tract as you move it through over the course of 5 days. This is a motility test (movement test) looking to see how well your GI system is functioning.

Well, Dr. Cline explained to us pretty much what we already expected to hear: my whole GI tract is now being affected by dysmotility. This means none of it is moving like it should.

Specifically, my stomach took 27 hours to empty (it should be less than 4) and my colon did not empty in the time that the pill was active (120 hours—it should empty in less than 48 for someone my age or 59 for the test’s basic criteria). We are not sure when exactly the pill moved out fully (hopefully it did!).

The doctor said that this explains why I don’t tolerate my tube feedings well and why I am unable to gain weight at this point. However, due to some elevated liver function tests, I’m unable to start IV nutrition (TPN) right now, but honestly that’s okay with me. I’ve been on TPN in the past and although it is an important option to have and is saving the lives of many of my friends with the same conditions (Motility disorders or Digestive Tract Paralysis) as me, I’m not ready to go back on it at this time.

Our second option was a whole intestinal transplant. They would remove my stomach, intestines, and colon and replace with someone else’s stomach and intestine. The colon would not be replaced. However, this is not a guaranteed fix and with my connective tissue disorder there’s a good chance it wouldn’t heal correctly or my body would break down those organs with time, too. It’s not a good option for me at this time and is left at the bottom of my list, which leaves me with only one option for treatment.

For now, we are trying to get a new treatment approved by insurance. This is IV immunoglobulin therapy. Essentially we would be trying to reboot my autoimmune system and hoping that my body would stop fighting itself and in that process my GI tract would speed up and start working better. This would most likely be a monthly treatment. It is a very expensive treatment and can be hard to get approved, but working with multiple specialists, we are hopeful!

I also plan to look into some more natural and homeopathic treatment options like natural antibiotics and supplements, acupuncture for pain, and multiple other things that have been suggested by all of you!

I am trying my best to find a better treatment option and work toward a healthier self. Thanks for reading and thank you for all of your thoughts, kind words, and love that you continue to show me. It truly makes a world of a difference!