Feeding Tube Awareness Week 2019

Feeding Tube (fēd-ĭng to̅o̅b) noun. A medical device used to provide nutrition to people who cannot obtain nutrition by mouth, are unable to swallow safely, or need nutritional supplementation.

 

It’s May of 2013 and I’m awoken by a knock on my hospital room door. I’m half asleep after another long and painful night, but the look on my doctor’ face is enough to wake me up. I know what he will say, and already tears are welling in my eyes.

“I know this isn’t what you want to hear,” he says as he sits on the edge of my bed, “but we have exhausted all of our options. You’ve lost nearly 35 pounds and you’re severely malnourished.”

I don’t need him to tell me that. The weight had fallen off me faster than I’d thought possible. I was exhausted all the time. My bones ached. My brain was in a constant fog. I was so weak I could hardly walk. I hadn’t been able to eat without getting sick for nearly three months at that point. I had trialed half a dozen medications, undergone countless tests and tried every diet imaginable, yet no treatment had worked and I was still undiagnosed. I had seen it coming, but hearing it out loud made it very real, and honestly quite terrifying:

“You’re going to need a feeding tube.”

 

That was my first feeding tube, but wouldn’t be my last. Fast forward 5 ½ years and I’ve been living with a feeding tube since then, minus a month where we tried to see if I could manage without it, a test I failed miserably. I had nonsurgical tubes for the first year and a half before finally having a permanent tube placed. It was strange at first, but now it’s just a part of my daily routine, no different than brushing my teeth or making my bed. Now at this point, I’m sure you have a lot of questions, and I’m here to answer them because it’s feeding tube awareness week! Ok, technically today is the last day, but better late than never. This week is about showing the world what feeding tubes are and sharing the stories of those living with them. There is a largely negative public opinion on feeding tubes, and I’m here to show you that they aren’t bad – in fact, they are the reason that I and many other people are alive today!

3
A selfie of Charlotte wearing a black t-shirt with white lettering that says “super tubie” and has a red heart.

So what is a feeding tube? How do they work? Why do people need them? Why are there different types of feeding tubes? Can you still eat and drink? Will you have it forever? There are about a million questions you could ask about feeding tubes, so I’m going to try to answer as many as I can, but if I miss yours, please leave it in the comments here or ask me on Twitter!

A feeding tube, as defined above, is a medical device used to provide nutrition to a person who is unable to do so. There are dozens of medical conditions that may require or benefit from the use of a feeding tube. Problems with swallowing, an inability to gain weight (often called failure to thrive), severe food allergies, functional or structural issues in the digestive tract and much more. Some people have them temporarily, while others have them for many years or for their entire life.

I personally have a feeding tube due to gastroparesis and pan-intestinal dysmotility; essentially my stomach and intestines are paralyzed. This is a result of my two primary conditions, Ehlers-Danlos Syndrome and pandysautonomia – nerve damage and structural issues inhibit the contractions that move food through the gut (peristalsis) and as a result I am unable to eat. I still get hungry, but if I eat or drink I am faced with nausea, vomiting, distention, and severe abdominal pain. Right now I am able to have small amounts of liquids as long as I am careful about how much I drink and take medications to alleviate the symptoms. On really good days I can sometimes manage things like mashed potatoes or rice, but even these make me sick. My need for a feeding tube is complicated, but without mine I would be dead – I am unable to nourish or hydrate myself without it.  It was hard to get used to at first and it is likely I will need it for the rest of my life, but I am incredibly thankful for my tube.

4
An old photo of Charlotte with long hair, wearing a white and gray striped sweater. She has a nasal feeding tube on the left side of her face.

There are many different types of feeding tubes, and the type of tube that someone has depends on why they need it. The two main groups of feeding tubes are nasal and surgical tubes. Nasal tubes, as the name implies are tubes that go through the nose, down the esophagus and into either the stomach (nasogastric or NG tubes) or the small intestine (nasojejunal or NJ tubes). These types of tubes are typically used for those who need tubes temporarily, or to determine if someone can tolerate tube feeds before placing a surgical tube. Surgical tubes are ones that are placed through the abdominal wall and are used for people who need tube feeds for long or indefinite periods of time. These tubes can either be placed directly into the stomach (gastrostomy or G-tube), the small intestine (jejunostomy or J-tube) or be placed in the stomach but have a secondary internal tube that is placed into the small intestine (gastro-jejunal or GJ-tube).

2
A grayscale photo of Charlotte standing, wearing a striped sports bar and leggings. Her GJ-tube is visible along with her central line, and she is holding an IV pole with her tube feeds and IV fluids.

Some people are able to tolerate feeds in the stomach, while others (like myself) need to bypass the stomach and thus have tubes placed in the small intestine. Tubes with access to the stomach can also be used for decompression, also called venting or draining. This means a bag or syringe can be connected and allow stomach contents to drain out to reduce nausea and vomiting. It might sound gross, but it can drastically improve someone’s quality of life. The advantage of the GJ-tube (the kind of tube I have currently) is that it allows the feeds to bypass the stomach through the J portion of the tube and venting through the G portion simultaneously. Again, the type of tube someone has and what they use it for varies a lot depending on the condition the tube is being used to treat.

5
A picture of a tube feeding pump and a bag with formula on a white background.

I have mentioned the word “feeds” several times, so I should probably explain it. “Feeds” is a term used to describe the formula that is put through the feeding tube to provide nourishment. There are dozens of formulas, again catered to the condition the tube is being used to treat. They vary in calorie content and nutrient composition, and are delivered in different ways. Some people do boluses, meaning they put a large amount of formula through the tube in a short amount of time. Other people, often those who have motility issues (paralysis or slowing of the digestive tract), can’t tolerate high volumes, so will instead use a pump to deliver the formula. The rate the feeds are delivered and the time a person has to be hooked up to the feeds also varies. In my situation, I am hooked to the pump 24/7 and the formula is delivered at a very slow rate because it is all my body can tolerate. Now

1
A picture of Charlotte sitting in her wheelchair, with her tube feed and IV fluid lines clipped to her side.

you might think, how are you supposed to live and do things when you’re hooked to this pump all the time? While I use an IV pole to hold it at night, the pumps and feeds are very easily put into a backpack so I can carry on with my day. I have essentially been attached to a backpack for the last 5 ½ years and there’s not much I can’t do.

There are many misconceptions about feeding tubes and often negative views, but I hope you can come away from this post not only knowing more about them, but recognizing that they are the lifeline for many people and are actually a really positive thing. Sure it can be difficult and sometimes annoying to have one, but because of my tube I am able to continue doing what I love. This is but a brief overview of feeding tubes, but I will happily answer any questions you have!

 

Access in the Classroom I – The Accessibility Statement

People with disabilities of all kinds represent nearly 1/5 of the US population. Regardless of the visibility of their condition, the size of your university or classes, or whether you are an instructor or a student, you will at some point share a classroom with someone who is disabled. Census data reveals that up to 15% of graduate students have reported some form of disability, so an important topic in academia in STEM and across all fields of study is accessibility in the classroom. I attended a fantastic seminar hosted by the University of Michigan’s Center for Research on Learning and Teaching (CRLT) about disability in education and it really got me thinking, so this will be the first of a series of posts that discuss various aspects of accessibility in a classroom setting.

A primary bridge to accessibility for the student is requesting accommodations. It might seem pretty straightforward – if you’re a disabled student in need of accommodations, just speak with the professors, and if you’re the one teaching, modify things as needed when a student comes to you to discuss their needs. If only it were that simple. With something as sensitive, complex and variable as disability, the bottom line is that there is no one-size-fits-all solution to making a learning environment accessible. Something that is accessible for one person may not be for another; you could talk to a hundred people with the exact same diagnosis and every one of them could need different accommodations. To improve classroom accessibility it is critical that underlying accessibility issues are understood.

For one thing, students may be afraid to go to the professor and ask for accommodation, especially if they are first year or first generation students. It can be intimidating to approach a complete stranger who is in a position of power to discuss ones need for assistance. Even if it is not intended, a student may feel pressure to disclose more information about their conditions than they are comfortable doing so because they worry about whether they will be believed or taken seriously. Additionally, a disheartening reality is that some professors do not take accommodations seriously, make the student feel bad for asking, and even refuse to provide them. In the past I have been told by professors not to sign up for a class without even discussing ways to try and make the class for me, which is incredibly frustrating and demeaning.

A second issue is that students requesting accommodations don’t want to be treated differently or viewed as getting special attention or advantages by their peers or professors. Social repercussions may surface if a student’s peers feel as though the accommodations are giving the student an unfair advantage. The main reason this

2
Graph with orange and blue bars explaining the view that most people have on accommodations versus the way they actually work.  The first shows that disabled students get an advantage over typical ones, and the second shows that accommodations just make the two equally successful

problem exists is because most people have a distorted view of how accommodations work.  To improve clarity and transparency, consider the graph to the right. We are going to pretend it represents a common accommodation, such as extra time to take an exam. If a typical student only gets 60 minutes to take and exam and a disabled one gets 120, many would view this as an unfair advantage. In reality, a disabled student may have decreased fine motor skills, difficulty with reading and comprehension, or vision impairments. This means not only that their baseline or starting point to complete the exam is lower than in a typical student, but that the 120 minutes they get to take a test are equivalent to the typical students 60. Accommodations don’t provide an advantage, but rather level the playing field so all students, regardless of ability are able to succeed.

A third issue involves the resources provided by the university itself. Most universities have some form of student disability services program, where they are able to formally request accommodations and are backed up in case there is an access issue. The only downside to these programs is that the process of establishing formal accommodations can often be lengthy or difficult. Many universities require documentation from doctors, which may be hard to get if you can’t get an appointment or if they take a long time to return it. Additionally, this imposes a major issue for students without health insurance; if they’re unable to see a doctor because they can’t afford it, they aren’t able to establish accommodations. Because of these issues one of the best things you can do if you’re teaching is being open to providing accommodations even if they aren’t formally reported.

So with all these considerations, how can you improve classroom accessibility? A simple first step is an accessibility statement.  Just like a syllabus has sections about the course material, expectations and lab safety, you can include a statement about your approach to providing accommodations. One of the most important parts is making it clear that you are open and inviting to providing students with the help that they need and that

1
Charlotte siting in her blue wheelchair in a field with tall grass behind her and she is investigating a large bird feather, while Dr. Myers stands beside her.

you are willing to solve problems as they appear. This past summer I took a field mammalogy course and inherently, any field course is going to have limited accessibility. But I emailed the professors teaching it, Dr. Phil Myers and Dr. Joseph Bump and they were 100% on board for figuring out a way to make this course a possibility for me. They went to great lengths to assure that my experience was the same as the able-bodied students I shared the class with. This is the type of inclusion that I challenge any professor to achieve – it makes a huge difference.

Another critical component of an accessibility statement is assuring that the students’ privacy will be respected. Some students may choose to share more detail about their conditions and needs while others may simply state that they have a condition and need accommodations for it. They are under no obligation to disclose their medical history, and even paperwork from a disability services office doesn’t typically list specific conditions. Yes, there is the chance of people abusing this approach to not requiring paperwork and giving the students privately. A student could ask for things like the extra test time even though they aren’t disabled. It simply comes down to whether you want to risk denying accommodations to a student that is disabled simply because other students have cheated the system. Trust in the fact that the people who take the time to discuss accommodations are the ones who truly need them.

An accessibility statement tells students from the first day of class that you are dedicated to assuring that all of your students succeed, regardless of their ability. There are a lot of ways that you can improve classroom accessibility but this is a good place to start. So next time you are preparing a syllabus, consider adding an accessibility statement, and stay tuned for future posts about access in the classroom.

SICB 2019 – An Accessibility Perspective

The nerves kicked in the day that my research abstract was submitted. It was a big deal, to be preparing for a presentation at an international conference so early in my graduate school career, but it wasn’t that I was scared of. My mind was already racing; car transportation, the airport, the plane ride, the hotel, the conference venue, the room I would be presenting in. As excited as I was for the opportunity, I was preparing to travel halfway across the country with only Fisher at my side, with no idea what I would be walking (or rolling) into. My biggest fear? Accessibility.

I recently had the pleasure of attending the 2019 Society for Integrative and Comparative Biology meeting and the chance to present my first year master’s project there. meeting was held in the beginning of January in Tampa, FL, a 1100 mile stretch from my home in Ann Arbor. One of my greatest reservations in traveling is dealing with accessibility issues, a primary reason that I haven’t really gone anywhere since I began using a wheelchair nearly 3 ½ years ago. The odds are that, if you aren’t disabled, you probably have never even considered the accessibility concerned associated with travel. When you are able-bodied and traveling to any sort of event, you don’t have to worry about things like whether the venue will have (functioning) elevators or truly accessible bathrooms.

This post is going to focus on accessibility concerns associated with the housing, the venue, and conference events. I will save my discussion of airport and plane accessibility because they don’t reflect on the conference itself. My conditions affect my mobility, but through the post I will also touch on aspects of accessibility pertaining to other types of disabilities such a hearing or sight impairments. My main goal of this post is to provide a perspective on how the accessibility of an event like this can shape the experience of a disabled person. Conferences are an integral part of academia and STEM research, so assuring accessibility should be standard.

2
A black metal ramp is positioned over a large set of stairs on a sidewalk along a waterway. Boats are docked next to the pathway and there are several people walking toward the camera. The sky is blue and cloudless and there are palm trees and tall buildings in the background.

The first day of the conference was probably the most intimidating because, again, I had no idea what to expect. Thankfully my trip from Detroit was uneventful, and after a few hours of recovery in my hotel room it was time to head to the conference venue. My hotel was only about a block from the Tampa convention center, but a significant amount of construction meant that the most direct pathways were blocked.  I followed the detour out and around the back of the hotel and was excited to see ramps were already in place, assuring access to the venue. I’m unsure if this was the doing of the conference, hotel or city, but either way it was a pleasant turn of events to not need to seek out a different route or make a request for a ramp to be installed. Detours around construction sites don’t always considered disabled individuals, and they can be forced into difficult or dangerous situations like having to bypass the site by going on the street.

The convention center is new enough that I expected basic accessibility to have been considered in its design. The elevators in the building were functional, although the downside was that there was only one set of them and it wasn’t very convenient in location in relation to where many of the events were occurring. This slowed me down a bit in trying to dash between events and I often ended up coming into talks late, which I don’t like to do. These rapid room changes were also made more difficult because the lower floor of the convention center was primarily carpeted and if you’ve ever used a wheelchair, you will know how much harder it is to move than on hard flooring.

1
A large accessible bathroom stall with a gray floor and walls is pictures. There is a lowered sink, mirror and garbage can, several silver transfer bars and a lot of space where even a large wheelchair could fit.

Just as important as having functional elevators is whether the bathrooms are *actually* accessible. You would be amazed at what can pass as an accessible stall (trust me, it’s bad – I have a whole post planned out for discussing that issue). It was again a great surprise to find some of the best designed accessible stalls I’ve ever seen. They had plenty of space for my wheelchair and Fisher, a private sink, well-positioned transfer bars and there was at least one or two in every restroom in the building. Now you may be thinking, how does this relate to the conference if it’s just part of the building Here’s the thing – when you are planning an event of any size, doing your research on the location it will be hosted in and assuring it is accessible is of great importance. Choosing a venue designed with accessibility in mind says to disabled attendees that their needs were considered, and I can say from experience that it means a lot.

Beyond the building itself, there were some other important points I wanted to make. Attending an event as large as this conference was can be daunting when you have a service dog. With so many people around, you are almost guaranteed to be dealing with individuals petting or distracting them. Although it doesn’t necessarily reflect on those running the conference, it does say something good about the scientific community that over the five days I  spent at the conference I didn’t have issues with a single conference attendee trying to interfere with Fisher while he was working. If anyone wanted to interact with him, they asked first and did so politely. It’s an amazing experience to be surrounded by people that actually respect the fact that a service dog has a job to do and isn’t there to be a source of entertainment.

The majority of the events that occurred during the conference were short talks, and because of the size of the venue there were often a dozen or more occurring simultaneously in different rooms. Some of the larger rooms had stages, and I had my concerns about how I would present given that there were no ramps. Thankfully the room I gave my talk in didn’t have one, but the staff assured me they would have arranged something if necessary. Additionally, most people spoke from a podium that had an attached microphone, and again the staff were amazing and assured me that a hands-free one would be available for me. In going to listen to talks, there was always plenty of space for me to park my chair to listen and at some of the busier sessions, my chair offered the added bonus of not needing to find an empty seat!

The other major events were poster sessions in which 100+ posters were on display and you had a chance to interact with those who had made them. These were admittedly a bit of a challenge to navigate in a chair. It was crowded, meaning it was very hard to move around, and with so many people around I wasn’t able to get a proper look at many of the posters. The alternative was to come and look at the posters before the official sessions started, a time when very few people were present, so I did this often. The downside of this was that one, the presenters weren’t there to speak with and two, it meant skipping other events to come look at the posters. Improvements in accessibility could be made by the increasing the space between rows of posters as well as the posters themselves to open things up a bit. This may be limited by the space available in the venue, but it something to consider.

As I said in the beginning, my focus in this post would be on accessibility for individuals for mobility impairments, but I have a few points left to make. For one, almost every talk I saw used color-blind friendly color palettes in making their slides, and most used large fonts that were easy to read even from the back of the room. Encouraging these in all talks and posters would assure someone colorblind or visually impaired could view any material. While sign language interpreters weren’t present at every single talk, assistive technology was available to those who are deaf or hard of hearing upon request. Many presentations included different forms of media, including videos. Presenters should be encouraged to caption any dialogue in videos, and to also provide warnings for bright or flashing lights that could be dangerous to individuals with light sensitivities and seizure disorders.

The things that I’ve discussed in this post are just some of the features and improvements that should be considered in event planning. I was very nervous at first, but was absolutely blown away at the care that was taken to assure this conference would be accessible to anyone. . I want to thank everyone who helped to run SICB and made sure I had the same awesome experience as everyone else there – I can’t wait to come back next year! Encouraging accessibility in STEM is important in many ways, and if it can be done at an international conference there is no reason we can’t integrate it into labs and universities across the country and world.

3
Charlotte and Fisher are posed in front of a large sign that says “Society for Integrative and Comparative Biology – 2019 Annual Meeting” with palm trees and a post card pictured in the background. Charlotte is in her silver wheelchair, wearing jeans and a brown blouse. Fisher has his front paws up on Charlotte’s lap and is looing at the camera.

 

Introductions

It took me a long time to decide if I wanted to start blogging again.

I had a blog several years ago but it was heavily centered on an old project that has since died out, and I have been very unsure about starting a new one. I’ve spent the last ten months going back and forth, talking myself in and out of doing it, and starting pages only to delete them before I could publish them. I’m not really sure what has held me back for so long. Fear of being judged or shamed for expressing my opinion on touchy subjects? Concern that my posts may be seen as attention or pity-seeking? Self-doubt? A lack of confidence? Honestly, probably all of these. It took me a long time to get here. Beyond this uncertainty, however, I find myself feeling excited. Excited to share stories and discuss things that I care deeply about, excited to connect with people who are facing similar challenges and excited to have a place to channel my thoughts and a voice to promote positive change.

I’ll talk more about the goals of this blog later, but let’s start from the beginning with the blog name and my identity in the Twitter-verse – The Bendy Biologist. The months I spent deliberating the start of this blog I also spent wrestling with what to call it. I wanted something that would help to define my identity, but would also leave people curious and wanting to know more. The term “bendy” refers to my primary diagnosis; a rare connective tissue disease called Ehlers-Danlos Syndrome. I could talk for ages about the complexity of this disease and the problems it can cause (and I will in a future post, I’m sure), but one of the defining characteristics of the disease is extreme weakness and instability of the joints. Essentially, Ehlers-Danlos Syndrome (EDS) causes defects in collagen, a structural protein that acts like a glue to hold your body together. There is a large amount of collagen located within the joints, allowing them to bend and facilitate movement, but with EDS they bend way too much. This results in hypermobility (often extreme), where joints bend farther or in directions that they shouldn’t, and causes frequent dislocations or partial dislocations (called subluxations) with even the slightest actions. Because of this, many individuals with EDS refer to themselves as “bendy”, which is where I found the inspiration for this blog name.

I stuck with this name because it gives insight into an aspect of my condition that encourages questions and offers an opportunity to educate. Every person with this disease and every person with any disability is different – some people like to share and spread awareness, while others want privacy, and both are equally valid. I have always preferred being open and honest with others and explaining things rather than being gawked at like an animal in the zoo. I find these genuine interactions preferable to hearing whispers about the girl with the dog and wheelchair and tubes, and that is part of why I started this blog.

My biggest goal is to create transparency with life as a disabled, chronically ill woman pursuing an education and career in STEM. I want to share my experiences – the good, the bad and the ugly – with the hopes of education, awareness and connection. I am unbelievably grateful to be where I am today, but that doesn’t mean the path I’ve walked (or rolled) has been an easy one, and I have no misconceptions of the challenges yet to come from both a physical and educational standpoint. I am looking forward to where this blog will take me in the years to come, and welcome anyone interested in hearing my story