Learning to Live in Today

This week, while the class I began school with started their fourth year of college, I started my third year of medical leave.

People often ask me if it makes me sad to see posts about college or to drive through grounds when I’m headed to the hospital, but mostly what I feel is disbelief. How has it been so long? Does life really move on so easily without me? Will I ever get to be “normal” again? Do I even know what that means and could I return to it if I tried?

At a young age we start to understand that our lives follow a guided path; sure, everyone’s is different and we all stray from that path at times, but in general, it is set up for us. We grow up being loved and cared for, we learn right vs. wrong, we go to school and hopefully graduate. From there, you either get a job or “further your education,” aka more school. Some people get married, some have children, some do neither. The order isn’t the same for everyone, but we all make plans and in general, most people end up following some variance of “the path,” as I’m calling it.

Well, my path was altered in high school. I got (really) sick when I was about 16. It took me years to get real answers, in reality, I’m continuing to seek more answers to this day, but since getting sick, my life has been anything but “normal.” I spent time on homebound from high school, I did one year of college before withdrawing on medical leave, I’ve lost countless friends because of these illnesses, and I’ve lost any firm perspective on what my future may hold. However, I’ve also grown and become a stronger and wiser person.

Do I wish I were starting my fourth year with my friends right now? Of course. But I’ve learned that we can’t always predict where we will be in four years or four months or even four days…

You don’t have to fit anyone else’s mold. Yes, go to college; study whatever you want! Or, take a gap year. Travel. Volunteer. Be an actress, an athlete, an architect, a doctor, a musician. Be a stay at home mom, a stay at home dad. Be you.

Most importantly, don’t hold back. Splurge where ever you can, big or small. Do all you can to live in the moment and enjoy every possible second. Today, right now, is all you have. Now don’t go spending your family’s life savings on lottery tickets or a trip to vegas using the excuse “Rachel told you to,” but buy yourself something you’ve been wanting when you get your paycheck, just because you earned it. Take your parents or your family out to eat just because they deserve it. Do something just because it makes you or someone else smile, do it just to make memories.

Life is beautiful, but it is short and unpredictable. Throw caution to the wind and always follow your heart.

Battling Gastroparesis: Happy Awareness Month!

In December of 2013 I was diagnosed with gastroparesis. Like majority of people, I had no idea what that was or what the diagnosis meant for my future.

When I got my diagnosis I was given minimal information about the condition, and because I didn’t know what it was back then, I didn’t know I wasn’t getting the full picture. I was told I had delayed movement in my stomach, it wasn’t emptying food like it should be. They told me gastroparesis is a chronic condition but since mine is what they call “idiopathic” or without findable cause, it was likely post-viral and would go away within a year or 18 months.

This discussion, my original gastroparesis diagnosis, lasted only minutes, and I was left to figure out most of it on my own. My parents and I left that hospital thinking I just had to get through this flare up and then it would hopefully go away for good. I had no idea on that day 4 years ago just how much gastroparesis was going to change my life.

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Some more info about GP– symptoms especially! And yes, that is my tube and a donut tubie pad!

Since my diagnosis in 2013, I have had countless tests and tried endless treatments, medications, diets, and therapies. Gastroparesis is extremely difficult to treat and there is no cure. In 2016 we found out that my dysmotility (movement disorder) had moved into my intestine and colon as well, so that became a major complication. Luckily at this point my parents and I had become experts on my conditions; after my original diagnosis we started to learn how to do our own research, we joined online support communities, and we went to see specialists who could give us more information about my conditions and prognoses as I was diagnosed with more conditions down the road.

The journey you go through when living with gastroparesis and generalized dysmotility is extremely taxing on both your body and mind; it’s exhausting and disappointing to try and try again and often get little to no relief. But, we have to keep trying in hopes that one day we will find the right treatment and hopefully a cure.

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As part of awareness month, I want to give you a glimpse at what it’s like going through testing and treatment with gastroparesis, so I’m going to list some of the tests, procedures, and treatments I’ve tried over my time with GP.

I was originally diagnosed with an Upper GI series, an endoscopy, and a 90 minute gastric emptying scan. Since then, I’ve had 3 more 4 hour emptying scans, multiple endoscopies, countless EKGs, lots of ultrasounds, endless x-rays, a breath test (SIBO), esophageal manometry, anal manometry, smart pill test, CT scans, MRIs, and so much more. And these are only the tests that have to do with GP—not my other conditions.

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I’ve tried physical therapy, cognitive behavioral therapy, acupuncture, dry needling, chiropractors, and essential oils. I try keeping up with walking and core strength and I keep a positive mind set—no one can tell me I’m sick because I’m depressed! 😉 I’ve even read mindfulness books and watched documentaries on how to “heal your body,” although I wasn’t 100% sure about that one!

When I was able to eat, I’ve also tried a lot of diet adaptation. I was on the BRATS diet, low FODMAP diet, gluten free, dairy free, a gastroparesis diet, a liquid diet more than once, and I’ve been on both TPN and tube feeds. As of now I am completely dependent on my feeding tube for nutrition and my port for IV fluids daily.

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I stared with a picc line for TPN, then I had an NJ tube for a trial run with tube feeds before quickly deciding to have a GJ tube placed surgically in March of 2015. Since then, I’ve had my tube changed out over 26 times in IR due to either clogs, having it flipped into my stomach, or just needing a new tube (every 3-5 months). I also had a port a cath placed in August of 2016 and have that accessed 24/7 for fluids and nausea medication.

I won’t even list all of the medications I’ve tried because that’s just a ridiculous number and I don’t think you or I have the attention span for that. But you name a motility agent, a nausea med, a non FDA approved trial drug for GP, or pretty much anything used to control symptoms or promote motility or hunger and I’ve almost definitely either tried it or discussed it with my doctors and ruled it out as an option.

 

Over these (almost) four years I went from being able to manage my symptoms with a specialized diet and nausea medications to not being able to eat at all. Gastroparesis and generalized dysmotility are cruel illnesses, and paired with my genetic condition, Ehlers Danlos Syndrome, they’re relentless and grievous. My condition has progressed to a very serious level and I’ve tried most of the options available to me.

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Learning to embrace my medical devices 🙂 there should be no shame or shyness towards life saving devices like tubes and central lines!

Almost a year ago I saw my motility specialist at Cleveland Clinic, a man who is considered to be the best of the best, and he gave me three options. We’ve ruled it down to one option, but sadly insurance isn’t thrilled with it. 9 months later and we are still fighting for it. But we won’t give up. Gastroparesis won’t win this fight.

Happy Awareness Month! Keep your eyes out for more posts from me and others as we try to spread awareness and work our way towards a much needed cure!

Xoxo

R

 

Desensitized to The Diagnosis

Yesterday I got a new diagnosis. But in all honesty, a new diagnosis doesn’t phase me much anymore. When I was 16 I got my first diagnosis, Postural Orthostatic Tachycardia Syndrome (POTS), but I had no idea that 5 years later I would have more diagnoses than I can count on both hands.

In 2016 I was diagnosed with Ehlers Danlos Syndrome, a genetic condition that affects connective tissue and collagen in your body. For me, this diagnosis explained a lot. I had already been diagnosed with Dysautnomia/POTS/NCS as well as Gastroparesis and generalized dysmotility in my colon and intestines. I had been struggling with unexplained chronic joint and nerve pain and I finally had an answer; although EDS wasn’t an easy answer and it meant I will likely never be completely free of illness, I finally had answers.

You probably won’t understand this unless you’re chronically ill, but after receiving that diagnosis, the ones that followed haven’t been surprising to hear or hard to accept. EDS has a lot of co-morbid conditions, and as mine has progressed and as I’ve seen more specialists, I’ve collected a nice array of conditions. Because I know my illness and understand what it can cause, I’m prepared for all of the co-morbid conditions it can bring on.

It’s never good news when I get another diagnosis, but I like to think that a diagnosis simply means we are moving forward towards treatments and answers, it doesn’t actually change anything symptom wise. I’m the same as I was before the diagnosis, I just have more answers and another syndrome/condition on my records. Usually a diagnosis actually brings me more relief because doctors actually start treating a conditions once it has a label and is no longer just unexplained symptoms.

I don’t mean to minimize the severity or seriousness of chronic illness; every illness I have I take very seriously and we treat each to the best of our ability. But after being sick for so, so long and being diagnosed with so many things, there is a desensitization to the process. Maybe it’s a protective mechanism, a coping mechanism, or maybe it’s just because it becomes your life, but just because I’m progressively ill doesn’t mean I have to let each diagnosis set me back.

A Battle With The System: Fighting For Treatment

Nine months ago my motility specialist gave me three treatment options. My digestive tract paralysis had progressed from my stomach into my intestines and colon and there just isn’t much they can do for that.

Option one– a specific medication –was quickly ruled out due to risks with another condition I have and the third option is not doable either, so we were left with one option.

Our one treatment option was IVIG therapy, or IV immunoglobulin therapy. This is a treatment that focuses on rebooting the immune system and can sometimes help reset some of the issues with the central nervous system. It’s used to treat immune deficiencies and other conditions that can lead to a weak immune system. For me, the goal is to boost my system in hopes that my digestive tract will be positively affected. There are no guarantees and it’s only about a 50/50 chance that it would make any difference at all for me, but it is our best and only real option right now.

It’s been nine months since we put the prescriptions in for that and I’ve been denied by insurance twice. My illnesses aren’t on their list of conditions that require IVIG for treatment and each round of IVIG costs $10-15,000, so it’s not easy to get approved for patients like me.

That said, this is my only option for treatment that may help me improve, not just keep me comfortable. Even if all it does is help me tolerate my tube feeds better and have less pain or nausea, it would be a huge victory. This is what my doctors think I need. So being denied the opportunity to try it is really upsetting; sadly, we see this happen a lot in the chronic illness community.

Our medical system is a money making business, so a lot of medications and treatments take pre-authorization, out of pocket co-pays, repeated appeals, and some are not covered at all. But for those of us with severe, chronic and progressive illnesses, this can make it hard for us to live any semblance of a “normal” life.

I am so thankful to have good health insurance, but the hoops I have to jump through and the delays in my care are extremely frustrating at times. My parents and I spend hours each month calling the insurance agency and calling doctors and pharmacies to advocate for the treatments I need. I’m lucky to have people who fight for my care when I’m not strong enough to do it myself, not everyone is that blessed.

If our doctors prescribe us a medication or treatment option that they think is vital to our health care, insurance agencies should not be so quick to deny it. The lives and well being of patients should be the first concern of every part of our medical system.

A Word From Many: Ehlers Danlos Syndrome

As part of Ehlers Danlos Awareness Month I asked a large group of women with EDS to describe their journey with this condition in one word. Whether it be their most common symptom, an adjective that explains how their life has been affected, or an emotion that describes what EDS means to them, I just wanted to hear what EDS is to each person. I took all of these words and put them together to share in hopes that they will show how brutal EDS can be to so many people, but also to show the incredible strength that it brings to it’s sufferers and as a reminder that no one fights this alone.

So again, these words come from over a hundred different women– not just me! Many of the words were suggested by more than one person; the most commonly used ones are in the largest print. I don’t share these seeking pity, but because those living with EDS live complicated lives full of so many symptoms, emotions, and stressors that go unseen. Awareness month may be over, but every day we will continue to fight for better treatments, more awareness and understanding, and we will continue to fight for our lives.

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Ehlers Danlos Syndrome: When Things Went From “Promising” to “Progressive”

I was diagnosed with my first “real” chronic illness at age 16. In reality, I had been having symptoms for a long time, but they had always been passed off as hormonal symptoms, asthma, growing pains, etc. At the start of my junior year of high school I was diagnosed with Dysautonomia/POTS along with three other types of tachycardia and Occipital Neuralgia. I was experiencing severe, daily headaches, chronic fatigue, hypotension, tachycardia, pain, and a myriad of other symptoms. Although the doctors I was seeing did tell me that these illnesses were chronic, they also told me that because of my age and how the illnesses presented there was a high likelihood that I would grow out of them by the time I was in my early 20s. Although I was struggling at the time and had to change many aspects of my lifestyle to cope with these new symptoms, my parents and I had hope that this was only temporary and we would see improvement.

About a year later when I had just started my senior year of high school I was just getting over pneumonia when I started seeing an increase in my fainting and then began having gastrointestinal symptoms. Within a few weeks I went from vomiting once or twice a day to not being able to keep down any of my meals. By November I was taken out of school and placed on homebound due to my inability to attend classes regularly; my state of health was in rapid decline. In December I was admitted to UVA hospital where they were finally able to put a name to what was going on… gastroparesis. My stomach was essentially paralyzed and had stopped being able to process or move food through. At the time they told me it was a chronic condition but that in young people with no other pre-existing conditions it is often post viral and will go into remission or can even go away completely within 9-18 months. They fully expected me to fall into this category and told me that adjusting my diet and taking nausea medication should get me through until this time passed.

Although I did see temporary improvement with my gastroparesis, it obviously did not pass. About a year after my diagnosis I had my second “flare up” and ended up re-hospitalized at UVA and eventually ended up with both a central line and a feeding tube. After seeing multiple specialists including cardiologists, electrophysiologists, motility specialists, neurologists, GI doctors, a psychiatrist, rheumatologists, dysautonomia specialists, and I’m sure I’m missing something, I ended up finding out that my POTS and my GI dysmotility/gastroparesis is likely all caused by a genetic condition called Ehlers Danlos Syndrome (EDS). This diagnosis is what changed the dialogue surrounding my health.

EDS is a group of connective tissue disorders that are passed down genetically and cause a defect in the collagen in our bodies. I have hEDS (previously EDS type 3), which is also known as hypermobile EDS because one of the most distinctive factors is having hypermobile joints (having hypermobile or double jointed joints does not mean you have this condition, so don’t worry!). Because of my collagen defect, my joints are loose and my connective tissue is “stretchy,” leaving me with joints that sublux or pop out of place frequently and are prone to dislocation, skin that is stretchy and bruises and scars easily, and a body that bends and folds in funky ways. EDS also causes me extreme pain almost 24/7, it has caused osteoporosis to develop at age 20, led to chronic nerve pain, and it affects every part of my body down to my eyesight, my hair and nails, and my organs.

For me, EDS is the most likely cause of the autonomic failure that has caused my Dysautonomia as well as the cause of the failure of my GI tract. The tests I had done last fall showed that my entire GI tract is now affected, meaning the paralysis and dysmotility has moved beyond my stomach and into my intestines and my colon. Sadly, EDS is a lifelong condition that has no cure and very few treatments. When I got diagnosed with EDS, doctors stopped talking about growing out of it and starting talking about “comfort” and “symptom management.” The dialogue changed and things got a lot more serious. We have a lot of hope for improvement in my symptoms and my quality of life and we hope every day that someone will discover more answers for me and everyone else who is living with these illnesses, but EDS changed the game for me.

I don’t write this to scare you or ask for pity, I write it because it’s awareness month and I think it’s important to understand that there are illnesses out there that go unnoticed and unfunded and you only hear about it when it hits someone close to you. Heck, I had no idea what gastroparesis, POTS, or EDS was until I got diagnosed, but now my life is literally forever changed by them and even I don’t have answers. Doctors don’t have answers. So I write, I share what I do know, and I hope that maybe the next girl will find out a little sooner or find the right doctors a little faster. Awareness is important, so thank you for reading and thank you for sharing!

Adventures of a Tubie

Have you ever had to make a decision between what may be smart or practical vs. what would make you happy or what would be fun? People often make these choices in small ways every day when it comes to choices about what’s for dinner, whether to study or go out with friends, what to wear, etc. One of the biggest lessons I have learned in my journey with chronic illnesses is that life is short and sometimes it’s worth a little bit of impracticality if you’re just in need of some fun.

I spend a lot of time taking care of myself and majority of the time my health comes first. I have a lot of doctors appointments and I spend anywhere from 16-20 hours a day hooked up to my IV pole on various tubes for infusions and feeds. I take countless daily and as needed medications and require a great deal of rest due to chronic fatigue and pain. That said, after a rough recent admission—which you can read about in a recent article here—my parents and I decided that I am in need of some fun.

I have some fabulous friends who live with similar health conditions that I do, but most of them live hours, states, and even countries away! Taylor is one of my best friends and she lives in Texas; she has two or three of the same conditions I have and has a feeding tube! Taylor came to visit me and our other friend, Macy, last summer and we had an amazing time! We have had two other trips planned but both fell through due to our health at the time.

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You’d never know each of us have tubes, central lines, and a handful of chronic illnesses! This time together was so precious.

Well, even though my health is not currently considered “good” or even stable, I’m going to go visit Taylor! I will fly to see her and spend a week with her in Texas! Considering most days I hardly leave my house right now, this is a huge undertaking for me, but it will be so good for my spirit. And although we are both in our early/mid twenties, Taylor and I are both quite sick and have similar restrictions so we will be good company for one another 🙂

I am so excited for this trip. I do have some anxiety about flying and traveling by myself and I know that I will need a long time to recover when I get home, but it is totally worth it. Although I can’t escape my body and my illnesses, I can take a small break from all of the stress that comes along with appointments, phone calls, insurance, etc. (or at least I can try!).

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Sometimes you just gotta pretend you’re a normal 21/24 year old and duck face it out 🙂

This trip does not mean I’m feeling better or I’m recovering, it just means I’m doing something that is fun and something that will make me happy. I’m taking time to be young and savor this part of my life as much as I can. We don’t have time to waste, so even if all Taylor and I do is watch movies and talk and nap, it is so worth it. Even if it takes me two months of sleeping when I get home, it is so worth it.

Don’t forget to choose the option that will make you happy sometimes, even if it may not be practical.

Thanks for reading.

xoxo

Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome (EDS) is a group of genetically inherited connective tissue disorders. EDS causes a severe defect in the production of collagen, which is the part of the connective tissue is what provides strength and elasticity to major structures in your body such as your skin, joints, and blood vessels. EDS can range from being mild to being life threatening from person to person.

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EDS mama and nurse 🙂

Ehlers-Danlos Syndrome is considered a rare disease, and although I have the most common type, EDS type 3 or hypermobility type, there is still a major lack in research and funding. There are six different types of EDS, some more severe than others. There is no cure for Ehlers-Danlos Syndrome and very few treatment options.

EDS type 3 is diagnosed based on clinical evaluation and family history. Doctors look at joint hypermobility using a nine-point scale called the Beighton scale. I scored an 8/9 on my clinical evaluation, you generally need a 5 to be diagnosed, but it varies some. Other things they look for are easy bruising and scarring, stretchy and soft skin, subluxations and dislocations, joint and back pain, GI symptoms or bowel disorders, dental crowding, and postural orthostatic tachycardia. I have all of these symptoms and we found that my mom fits much of the criteria for EDS as well.

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My shoulder is in the process of sliding out of place in this photo, just because of how I was selfie-ing! Oops!

That’s a simple medical definition of EDS, but it is such a complex illness and causes daily symptoms and complications. In my case, we believe EDS is the underlying cause for many of my other conditions. It is likely that this genetic condition predisposed me to the autonomic dysfunction that led to Dysautonomia (POTS & NCS) as well as the failure of my GI tract. I have also been diagnosed with scoliosis, osteoporosis, and have suspected fibromyalgia that causes severe nerve pain throughout my body. My EDS causes severe joint pain and chronic back pain that often leaves me bed bound as well as constant subluxations and dislocations of my major joints such as my shoulders, knees, hips, thumbs, wrists, ribs, and collar bone. I rely on my feeding tube for nutrition and my port for hydration because my stomach and intestines/colon no longer function properly due to gastroparesis and generalized intestinal dysmotility.

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My feeding tube goes through my stomach and into my intestines so that I can bypass my stomach and receive nutrition.

Because I have low bone density (weak bones) and experience regular subluxations (joints popping in and out of place), I have to be extremely careful not to hurt myself. I can fracture bones much more easily than most and my skin bruises from things as simple as crossing my legs the wrong way or wearing boots for long periods of time. I used to be extremely active and adventurous and I loved to run and swim, but now I’m lucky to be able to take a short walk or do simple floor exercises a couple of days a week. My chronic fatigue syndrome leaves me in bed anywhere from 16-22 hours a day sleeping and resting and even when I’m awake I’m usually still just at home because of pain/nausea, daily migraines, and fatigue.

Ehlers-Danlos Syndrome has changed my life, just as it changes the lives of everyone else it affects. I have had to leave school and am unable to work due to high levels of daily pain, constant nausea, and extreme fatigue. One positive thing that has come from my diagnosis is the many friends I have been able to make from the online support communities that I joined once learning I had the condition. Making friends who are going through the same things that I am has been such a gift, even if most of them live in different states and even different countries.

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My first ever EDS friend! She also has gastroparesis and Dysautonomia/POTS just like me!

February 28th is rare disease day, so take time to be aware and spread awareness for rare conditions like Ehlers-Danlos Syndrome today. These conditions need more research, funding, and awareness so the millions of people living with rare conditions can move towards finding cures.

My Feeding Tube Journey

This week is Feeding Tube Awareness Week. As part of that, I decided to write a blog post about my journey as a “tubie.”

I got my first feeding tube in March of 2015. I had been battling with gastroparesis for just over a year at that point and was in my first year of college at UVA. Although typically you try a feeding tube before you resort to TPN (total parenteral nutrition—IV nutrition), I had already been on TPN for three months before this. Because I was hospitalized in December right around final exams and was supposed to return to school away from home, my doctors had placed a picc line in December in hopes that it would be short term and it would allow me to remain at school. However, when that line got infected in March and TPN was not working well, we decided to go ahead with a feeding tube.

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Picc Line AND NJ tube! Ick!

My hospital does a short-term trial run with an NJ (nasojejunal) tube before placing a long term GJ (gastrojejunostomy) tube surgically. For me this meant a two hospital stays, one for the trial run during which I had my NJ tube, a tube placed through my nose and down past my stomach into my intestine where we hoped I could tolerate feeds. Having this tube placed was one of the most uncomfortable procedures I had experienced up to that point. I was not sedated or medicated at all aside from some lidocaine ointment and they stuck the tube down my nose, past my throat and into my esophagus while I was choking and gagging, my nose bleeding, tears streaming down my face, and they kept telling me to sip on water and swallow and just hold on it’ll be over soon. Some people tolerate it fine, especially people without gag refluxes, but for me it was miserable. I could hardly talk or swallow for the two days they made me keep it in. So shout out to my many friends who have multiple, long-term NJ tubes, I don’t know how you do it.

The second hospital stay was for my surgery. They decided to place a low profile, mickey GJ button tube. I was lucky that I still saw my pediatric doctors, because they use these tubes on children and I am small enough to fit into them. Often, adults get long, dangling tubes called PEGJ tubes. My surgery was able to be done laparoscopically, but they placed the wrong size tube so the pain was much more than anticipated and we stayed in the hospital for a five days to try to manage that. I had to keep that tube in for 6 weeks for the tract to heal before switching it out for the right size and finally getting some relief.

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Tubie– this is about one year post op. I actually continued to lose weight for awhile.

I stayed in school for that semester anticipating that my feeding tube would improve my quality of life; in many ways, it did. However, my gastroparesis continued to progress and I had to make the decision to take time off from UVA and stay home the next fall. Although my feeds did help me gain some of my strength back, I didn’t end up tolerating them as well as we had hoped. It’s been quite a journey.

For a while I was able to get in almost 1,200 calories by tube every night. Because of my chronic fatigue and the amount of time I spend in bed, that was almost enough to get me by and I was still able to take in a few hundred calories by mouth. Over the first year or so, my tube feeding rate slowed down by about 40% and it took me much longer to get in what I needed and I often wasn’t able to finish feeds over night. But still, I was able to supplement some of what I needed by eating a few of my “safe” foods—potatoes, squash, simple carbs.

Other parts of tube life include daily maintenance like keeping drainage clean, flushing the tube every couple of hours so it doesn’t clog, and changing tubie pads or gauze. I deal with bloating, pain, and changes in how my tube has affected my self confidence and body image as well as adapting to how little control I have over what goes into my body.

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This is where I get my tube swapped out!

I also have to get my tube changed out every 3-6 months or every time it flips into my stomach or clogs. I can tell my tube has flipped into my stomach when my medications and feeds make me sick. When this happens, I have to schedule a time to get my tube fixed. When it is clogged, I have to call UVA and ask them to order a new tube. Sometimes it takes up to a week for them to get a new one and I go that long without receiving my feeds. (That happens to be the case this week!) I don’t get sedated for these tube swaps– some doctors use sedation, others don’t, mine just happens to be one who doesn’t. I get them done in radiology under imaging. They know me pretty well down there. It is an uncomfortable procedure but usually only takes between 30-60 minutes.

I’m about to hit my two year mark with my feeding tube and I now only tolerate a rate of 50ml an hour. That is almost half of what my goal rate was when I got my tube. My original diagnosis was gastroparesis, or paralysis of the stomach, but now my diagnosis has changed to Digestive Tract Paralysis (DTP) which means my dysmotility has moved into my lower GI system which makes tube feeding much more difficult. My colon is now greatly affected and my intestines are also delayed.

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This is the smart pill– a pill I swallowed and it tracked the movements of my GI tract and told us how each part worked (or didn’t 😉 ).

I recently switched formulas to a blended food formula in hopes that I will tolerate it better and it will make my body feel more human-like than my old formula that was full of preservatives and sugar. Sadly, I am not able to get in enough formula to gain weight. At this time, I also do not have any “safe foods” that I can intake orally to use to supplement my tube feeding. Because of this, my doctors talk about alternative options that could be in my future.

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My tube and my port peeking through!

My tube saves my life every day.  I rely on my tube and my port for 100% of my nutrition and hydration now. I can’t say I’m always thrilled about tube life, but I wouldn’t be here without it and I am so thankful for it. If you have any questions please don’t hesitate to ask!

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!