My Story: Year 3 Tubie

**Happy Feeding Tube Awareness Week! This is the first new post, keep your eyes open this week for more posts including but not limited to : Tips for Tubies, a project update, New tubies: Products to start with and where to get them, more on my personal experiences, and a special video! It’s also a great week to buy a painting or send a donation to Newbie Tubie Care Packages, so click here if you’re interested in more information on that :)**

Next month, in March of 2k18, I will celebrate both my 22nd birthday and my 3 year tube-iversary. In March of 2015 I was in school at UVA where I celebrated my 19th birthday on March 8th and then was admitted to the hospital the next week with a blood infection from my central line, which was keeping me nourished and hydrated at the time. On March 24th I was again admitted to the hospital for surgery to place my first long term feeding tube, a GJ tube that went through my stomach and into my intestine where I get my feeds.

 

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Our first admission– Dec. 2013, I was 17 and a senior in high school
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My admission in Dec 2014– first year at UVA but about to get a picc line!

 

Although I’ve had gastroparesis since high school, I never could have imagined that my case would become so severe, leaving me with a feeding tube(s) that could be part of my life indefinitely, taking me out of school, and changing the way I was able to plan for the future. When I first got my tube, my doctors hoped it would only be for a few months or maybe a year if I was really struggling, but we had no idea that my “flare” was about to become my new normal. Instead of having a few months of worsened symptoms like I had in the past, I waited a year… and then another year… and now another year with no relief.

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March 2015; I did a trial feed with an NJ tube and then scheduled surgery!

 

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That’s my GJ tube in the fall of 2017, before surgery!

After I finished my first year of college my health was at an all time low and I wasn’t able to go back to school in the fall. My tubes did help my nutrition, but I never tolerated them well enough to get in as much feed as the doctors wanted me to, never enough to gain a lot of weight back. It’s been three years on medical leave now; my classmates, my friends, will graduate in the spring and I won’t have had another day to be there with them.

My parents and I worked so hard to find answers, anything that would bring even partial relief; our original goal was that I could go back to school, but after a year and a half of incredibly severe symptoms and the addition of 3-4 new diagnoses, our goals became things like, “getting Rachel out of the house more… helping get her able to volunteer or babysit sometimes,” and at my worst times, it’s just “getting Rachel more energy and less pain/nausea so she can get out of bed…” From the Fall of 2015 through Summer of 2016, I saw at least three different specialists who are top in the nation on my conditions. Sadly, there are only a few medications that are used for gastroparesis, most of them not even FDA approved, and they can have nasty side effects.

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4 hour cardiology/EDS appointments are always an adventure 🙂
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Family road trip to Cleveland! They try to make these trips somewhat enjoyable.

My last (and current) motility specialist is at the Cleveland Clinic and is considered to be one of the top specialists in the world on gastroparesis and dysmotility conditions. He did extensive testing to find a root cause of my GP and to try to find a treatment option, but what we found out is that my gastroparesis had gotten so bad that the numbers were matched with only one other girl’s testing as the second worst cases in CC records. I actually met the other girl online and have been able to talk to her and compare notes and, sadly, she’s still struggling in huge ways—she could use your thoughts/prayers.

Because my dysmotility (lack of motion, “motility”) has moved into my intestines and almost stopped my colon’s motion (colonic inertia), my options are very limited. I had one viable treatment option that we were told was a long shot at working, but it’s my best/only shot. We have been working for over a year now to get IVIG (IV immunoglobulin therapy) approved, it has been a long and tedious attempt that has involved 3 doctors and multiple infusion centers, lots of disappointment, and plenty of reality checks. There isn’t a great chance of it working, but it’s essentially my last major treatment option, so it’s what we have to keep fighting for.

Last year around this time, a few months before, I started having a lot of trouble with my GJ tube flipping up into my stomach leaving me unable to do feeds. Because it was happening 2/3 times a month, I was getting malnourished and dehydrated and had lost even more weight—my all time low. It was decided that I needed to have a jtube placed, one that goes straight into your intestine, not through the stomach first, but it took us awhile to make that happen.

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Tubie bear needs an update- surgery!
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Recovery is the hardest part….

 

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Double tubie at Christmas time

 

It took me almost another year to get that surgery done due to my malnutrition and some complications with doctors and finding a surgeon who would take on my case, but on October 18th I had surgery for my new feeding tubes. There were some complications during surgery as well as in the week post-op, and recovery was long and extremely painful. But, during that time I came up with my plan for my new project, Newbie Tubies, and now that has come to life and is such a wonderful part of my life.

I may not have ever been able to imagine my life turning out this way, but I have learned, been inspired, shared my knowledge, and seen things in a new perspective. I couldn’t do it without the support of my family, I’m so, so blessed to have parents who are willing to do anything needed to care for me and help me be comfortable.

 

Being a tubie is just a part of me now, and I’m more than happy to share all I can about that for Feeding Tube Awareness Week. <3

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!