Mindfulness. It is just amazing how big of an impact our thoughts can have on our bodies, on our ability to heal. It’s important that you fill your mind with optimistic or positive, healthy thoughts and your life with all of the things that have always brought you joy, all of your hobbies, and the people who put a smile on your face.
Today’s technologies allow for incredible connections; there is a huge online presence of “spoonies” (as we call ourselves) all over instagram and facebook, both individual pages and group pages! This resource is a HUGE gift to those of us who suffer from severe illnesses that leave us homebound or bed bound with little to no social interaction, but there are cons to this as well.
When you surround yourself with individuals who are sick, and you are sick and have been for a long time, it begins to feel normal. You start to forget what it feels like to be healthy, to be a functional, productive person. When you start to feel that way you know it’s time to reevaluate your perspective, remind yourself of what makes you feel like YOU. Not sick you, not healthy you, but YOU.
Be mindful, know your limits physically and mentally. Will all of these posts from other sick chicks – some of them trending towards competitive over who is worse off, some who seem to thrive off of the attention from being sick – make you focus too much on the sickness? Does life revolve around illness? Because it doesn’t have to; no matter how sick you are, you are more than your illness.
There’s a lot more to mindfulness than this, but it’s a start. I encourage you all to focus not on your illnesses, not on symptoms and treatments and bad doctor visits, not of scary unknowns and dooming diagnoses, but on all of the aspects of your life that were there before illnesses, that exist independently from illness, that bring you simple pleasure, joy, distraction, love. Positivity. Light.
New to the spoonie life? Are you the patient or a loved one/caretaker/friend trying to support a spoonie? We have a lot of chronic illness “lingo” that can be confusing to the “real world,” so I decided to create this list to help get some of these out there and easy to find 🙂 This list contains many of the common words and acronyms you will come across but I’m sure I’m missing something! If you have other words/acronyms I missed, comment and I’ll add them in! I plan to do so as things pop into my mind, as well 🙂
And off we go!
“Spoonie”- chronic illness patient; a term based on @TheSpoonTheory that aims to explain the level of fatigue we face as well as what simple, daily tasks can take so much energy from a “spoonie.”
“Tubie” – a term used in the chronic illness world to talk about individuals who are tube fed; not an insult, we use it about ourselves and one another all the time.
“Stoma” – the tube site, the area on your outer abdomen where the tube enters, and is used to keep it clean and comfortable as much as possible.
“Feeds” – formula that goes through the feeding tube to sustain and nourish patients; “Time for feeds” is like “Time for supper!” except a lot less fun.
Tubie Pads: similar to gauze but much cuter, used to help keep the tube site clean, healthy, and CUTE 😉
Lovin’ these donations from @Turkeytotcustoms on Etsy & Facebook! Go check them out and tell them Newbie Tubies sent you 😉
tubie whoobies gives a thumbs up for Newbie Tubies! Tubie Whoobies is one of our VIP donors!
Tubie pads donated by some of our VIP donors : @newbietubies @turkeytotcustoms @HomemadeTubieHappiness @DorkyLittleEtsyStore
“Vent” – if you have a feeding tube that is in your stomach (gtube/gjtube/NG tube) you can “vent” it if you are nauseous or have air stuck in your gut (which doesn’t move). It is often done with a drain bag for gravity or a syringe for suction, which requires more caution – ick!
A cental line ( hickman or port, picc line) – essentially a long term IV that is placed into a large blood vessel near the center of the body most often through your chest and ending at the heart; used for IV treatments like chemo or IVIG, TPN, medications, IV hydration, etc.
my central line peeking out by my tube – rocking a crop top was an accomplishment
Brain fog – cognitive dysfunction that comes with conditions like dysautonomia, ehlers danlos syndrome, fibromyalgia, etc. and causes severe problems with word finding, on the spot thought processing, short term memory problems and sometimes long term as well, lack of mental clarity and trouble holding conversations, etc. // People often say they feel that way too, that it’s normal when you’re tired, it happens as you age, etc., but if you felt the fog we feel as patients, you’d be very glad your fog is not what we experience.
Motility (GI) – movement of the digestive system and its ability to move anything in there along with it throughout the GI tract. When there isn’t proper movement, undesirable symptoms can come up and you can be at risk for conditions like gastroparesis. Gastroenterologists who specialize in these conditions are called “motility specialists.”
Flip/flipped – if you have a GJ tube you can experience a “flipped” tube, this is when the j-arm comes up from the intestine and into the stomach, where it doesn’t belong. To fix this you have to have it rewired in IR.
Kevin, my “tubie friend,” has a central line & tube(s) like mine!
thank you AMT for the tubie bears!! what an incredible donation, I’m humbled and overjoyed.
“Tubie Friend” – a stuffed animal or a doll with medical devices to match your own, so feeding tubes, central lines, oxygen mask, etc.; these are incredibly comforting and meaningful for all ages.
“Button tube” – low profile feeding tubes have an extension that can be removed, leaving only the “button” when you’re not using it! The other surgical tubes don’t have that option, and we usually call them “dangler” tubes or catheter tubes.
13. “leaker” – individuals with cerebrospinal fluid leaks
14. Zebra – a zebra is representative of rare diseases, sometimes patients refer to themselves and others with such conditions as zebras themselves
Acronyms you may come across:
NTCP: Newbie Tubie Care Packages
NP: Nurse Practitioner
PCP: Primary Care Physician
EDS: Ehlers Danols Syndrome
POTS: Postural Orthostatic Tachycardia Syndrome; a type of Dysautonomia
MCAS: Mast Cell Activation Syndrome
NPO: nothing by mouth, long term or short term, often just 24hrs/overnight before surgery or certain procedures such as tube replacements, or even for fasting blood work
TPN: total parenteral nutrition, nourishment coming straight from an IV bag into your central line in order to stay nourished; can be short term or long term and is used as a last resort for dysmotility/gastroparesis patients who can no longer tolerate oral intake or feeds into the jejunum.
Types of Tubes:
GJTube: through your stomach and into the intestines; has access to both stomch and intestines
Jtube: a feeding tube that enters straight into the intestine; most complex and serious surgery out of the 3 surgical options, mostly used for those of us with severe dysmotility not just in the stomach, but also through the lower GI tract – small and large intestines/colon/etc. – and hence cannot keep the j-arm of a GJ tube “down” due to the lack of movement/pull.
Gtube: a tube through the abdomen and into the stomach directly, no lower access
NJ/NG: tubes going through the nose instead of the gut; usually used for short-terTm help for babies, individuals hospitalized, etc. or trials for feeds before surgery for G/J/GJ surgery.
*If you have any suggestions for words/phrases I should add, let me know- I’m always happy to have opinions from others 🙂 *
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.
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.
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.
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.
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.
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!
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.
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!
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.
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!).
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.
I’ve always been told that I’m a lot like my mom. We are both strong willed (maybe stubborn), hardworking, and loving women. My mom is more free spirited and outgoing than I am and loves to be spontaneous; while I tend to like to have a plan, she’s always up for adventure. Although I’m slightly more “rational” as we put it, we both always look for the positive in the situations we are in and help each other hold on to hope.
I am so blessed to have a mother who not only went above and beyond in my childhood but who continues to care for me today– in my adulthood! Not everyone is lucky enough to have even half of that.
My mom goes above and beyond each day to help me and my sisters be as healthy and as happy as we can. She works a full time job and parents full time for 3 of us! Having a grown child who is as sick as I am is more than a full time job in itself, yet she manages a job and my sisters as well. Of course having a wonderful husband and father helps, too 🙂
Although my mom never planned for it, she has become my at home nurse. She overcame her squeamish side and learned how to change a port needle, prep feeds and fluids, handle all of my feeding tube supplies, deal with my fainting, and so much more. She’s incredible.
My mom is also one of the strongest women I know, both emotionally and physically! Neither one of us is great with expressing ourselves emotionally, but she’s been through so much yet remains so strong. She supports me and the rest of our family through everything and always advocates for us without hesitation.
I could go on and on about my mom and all of the amazing things she does, but this is a post to celebrate her birthday! So, happy birthday, Mom! I hope your day is fabulous. I love you so much. I wouldn’t be able to do this without you. Thank you for fighting beside me every day❤
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.
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.
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.
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.
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.
As my 21st birthday approaches (less than 2 weeks away!), I have been reflecting a lot on all that has changed this year and how crazy my journey with chronic illnesses has been. My life is so different from what I used to imagine it would be at this “milestone.” I never could have predicted the many things that have shaped me into who I am today, but I’ve made it another year and that’s something.
When I was younger, I always imagined my 21st birthday would be celebrated with food, friends, family, and of course, my first legal drink. I figured at this point in life I would be in college studying and living like a college student. I got one year in at UVA before taking medical leave; I am still working on getting back two years later. A part of me still feels like I am a first year at UVA, yet I see all of my friends getting ready to finish their third year! I can’t believe it.
This year, my illnesses have progressed to the point where I’m not able to intake almost anything orally, I have trouble even tolerating my tube feeds, and most days I spend much of my time in bed. My migraines make me extremely sensitive to sound and light so I get over stimulated very easily. I am 100% dependent on my feeding tube and my port for nutrition and hydration and I am on around the clock medications to try to control nausea and pain. My symptoms and lack of energy make it hard to plan ahead and make it so that I’m most comfortable just being at home.
My 21st birthday won’t be celebrated with food or alcohol. I likely won’t see friends or have any sort of “party.” My mother does like to try to be sneaky, so if you hear of any secret plans, feel free to inform me. I’m not a huge fan of surprises 😉 My birthdays now are usually a quiet affair celebrated with just my family. I don’t tell you this to complain, this is just how it is; for me, simple and peaceful is usually just right. Since I can’t eat and my energy levels are extremely low, I don’t require much. Chronic illnesses steal a lot from you, but they don’t have to prohibit you from having fun or enjoying special events.
Although my 21st birthday is not what I would have imagined it to be, and my life has taken some unexpected turns, I feel blessed just to be here and to have an incredible family here to help make the day as happy and celebratory as possible. My illnesses have taught me to be so appreciative and thankful for all of the small things in every day, and I know my birthday will be wonderful, even without cake or alcohol 😉
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.
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.
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.
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.
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.
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!