I had an ISA meeting. That’s Individual Support Agreement. At the last second, they brought a Surprise Administrator. That is what I am calling the lady who showed up at the door to the meeting even though I’d been told that the only people present would be Laura (my DPA and soon to be adoptive mother) and my two case managers. Surprise Administrator (SA for short) was someone who works in the Howard Center administration. Surprise because they didn’t tell me she’d be at my ISA meeting until she was at m
The ISA is Vermont’s version of a person-centered plan. It, of course, just like in other states, does not have to be either a plan or person-centered to qualify as a person-centered plan. The meeting was certainly not very person-centered. It degenerated into a shouting match mostly. And a lot of it was the Surprise Administrator telling me that I was off-topic. At my own ISA meeting. When attempting to explain my ISA goals. Which were “off-topic” because they didn’t like
So it was good that there was a moment of comic relief in all that because otherwise it was just a shitshow that went nowhere productive.
This moment of comic relief came at an unexpected time.
I had defined my first goal as survival.
I meant it.
I actually had specific, concrete actions I wanted taken in order to get to that goal, but the Surprise Administrator was busy telling us that this was impossible.
So at some point an exchange very close to the following took place between Laura and the Surprise Administrator:
Surprise Administrator: Survival isn’t a goal. Laura: Yeah it is! Surprise Administrator: It’s a vague goal. Laura: What’s vague about it? If her heart keeps beating… Surprise Administrator: Yeah but some people define survival differently than others, like some people define it as being hooked to all kinds of tubes and vents and stuff. Me: (silently but firmly pull shirt up to show two feeding tubes and an ostomy bag) Surprise Administrator: OH MY GOD I DON’T NEED TO SEE THAT PUT YOUR SHIRT BACK ON RIGHT NOW!
After the amount of sheer bullshit that went on in that meeting, I can’t even try to make myself feel bad about the amount of giddy, giggly, juvenile pleasure I got out of that incident. Especially given how sleep-deprived I was at the time.
So later on I discovered the best Twitter hashtag ever: #GetYourBellyOut.
It’s the complete opposite of the Surprise Administrator’s hashtag, which I imagine would be #PutYourShirtOnMel.
The idea is people with ostomy bags are supposed to pull up our shirts, take selfies, and post the pics on Twitter under the hashtag #GetYourBellyOut.
It was started by a guy with a colostomy. The point is to reduce shame and stigma around colostomies, ostomy bags, stomas in general, etc. It’s mostly about colostomies but can apply to anyone with similar things. My ostomy bag goes over a healing jejunostomy stoma after the tube was removed, and I’ll continue to need an ostomy bag to catch the bile until it heals. Which could be months.
So this is the picture I posted to #GetYourBellyOut:
Which is basically, in the above picture, roughly the same sight the “PUT YOUR SHIRT BACK ON” comment was inspired by.
I’m just… highly amused there’s a hashtag for exactly what I did spontaneously out of frustration.
I’m a huge fan of anything that makes people realize that bags, tubes, holes in weird places on the human body, and the like are a normal part of life for a lot of people. And not a cause for excessive bellyaching (oh come on, I had to say it) about having to see it…
So um. Sie doesn’t have a name (well sie does by the end of this post, I decided to name hir), and I’m not sure sie’s gonna have a name. I haven’t named tubes since Enid — long story.
But I swear with the way they move, these little MIC-KEY buttons can look like they’re alive.
So meet my tube. Sie’s a 14 French MIC-KEY button jejunostomy tube, 3.5 cm stoma length. I think sie wants to say hi here:
I think sie’s adorable.
And yes, sie moves. Mostly peristalsis, the natural movement of the intestines, but it makes it look like sie has a little head that peeks around. Most of the time when sie’s in hir dressing sie moves a little less, which is good (you don’t want a J-tube spinning, sie has a long tail inside of me).
Sie’s modular. Which means that the part you can see is just the part that attachments can clip onto. There are different extension kits for different types of syringes and feeding attachments and situations, and all of them are pretty cheaply replaced. Which means if one of your extension kits breaks, you don’t have to replace the entire tube inside you. You just replace the external extension. Usually when I’ve had MIC-KEY button J-tubes they have needed internal replacing only every 6 months or less, and in my case we were usually just being cautious and could’ve gone longer. For some people they last years.
Because there’s not a big giant dangling thing coming out of you, low-profile tubes like MIC-KEY buttons are a lot safer. They don’t catch on things and yank out very often. They don’t need to be taped down to prevent movement. And the ones that do need to be taped down, taping doesn’t really prevent all movement, so they move more and that can put wear and tear on your stoma. They’re also really good for young children because children are less likely to see a giant dangling thing and play with it and yank it out by accident.
Here are some of my tube’s extensions:
This one goes to an ENfit connector. ENfit connectors were designed for everything from tube feeding attachments to syringes, to make it so that it’s impossible to confuse a feeding tube with an IV, a mistake that can be fatal. So I like the idea of ENfit, although it was messed up pretty badly when they tried to make it universal for all existing feeding tubes and it wasn’t, and neither was their alternate solution.
This one goes to an ENfit connector but allows two connections. This means you could have one part connected to your feeding pump, and at the exact same time be putting meds in the other part with a syringe, without having to unplug anything.
This one allows a normal 60 mL cath-tip syringe to put things into your tube.
This one allows two sizes of syringe — cath-tip and a smaller kind that are often used for medications.
And there are others in various shapes and sizes, those are just the four I use the most often.
Here is a video showing how easy it is to put in the extensions.
My old tube was not modular. It was a 12-French MIC* J-tube, and it is one of my least favorite tubes. But it is the only one they will implant surgically, then you have to wait six weeks minimum before you can switch to the tube you want.
As you can see in the photo above, the tube is all one piece. If one part breaks or wears out or stretches beyond usability or gets clogged, you have to replace the entire thing. It’s also a constant safety hazard because no matter how well you tape it down (and taping it down creates its own safety hazards that are different) it’s gonna still be able to move and get caugh on things.
So my new tube… maybe I should give hir a name, I’m just not sure what name to give hir. I guess I’ll call hir Linden for now, and see where it goes. I’m just tired of not having a name. So Linden, Lindy for short.
So here are the official photos of the old MIC tube i had, and the new MIC-KEY tube. It’s night and day, even though they serve the same function. The following is a Halyard 12 French MIC* Jejunal feeding tube. And really sucks as feeding tubes go.
The following, on the other hand, is the kind of tube Linden is, called a low-profile feeding tube or a MIC-KEY button. This kind of tube is modular and generally wonderful. Again, the long tail you see is mostly inside of me. The tail is part of what makes J-tubes (intestinal feeding tubes) different from G-tubes (stomach feeding tubes).
So meet Linden again:
And I hope you find hir as cute as I do, even though a lot of people would find it weird to call a feeding tube cute. I kind of wish I could give hir decorations, but there’s no way that would either be safe or stay put, so no point. But I can name hir Linden and show people the way sie moves. ^_^
What do you imagine is happening when you see this scene:
I am lying in a hospital bed, very ill with aspiration pneumonia and starvation. I have a visitor from out of state, someone who recently lost her father to pneumonia and wants to see me just in case. A doctor walks in.
This is a teaching hospital, so he’s not alone. He’s followed into the room by a line of assorted med students, residents, and the like. I call them ducklings, because they followt he main doctor around in a line. Someone online said “Not ducklings, doclings.” So now they’re doclings.
So the pulmonologist — not my pulmonologist, just a pulmonologist — walks into my room followed by a gaggle of doclings, who fan out around my bed. And the first thing out of his mouth is a solemn, “Are you at peace with your decision?”
I say yes.
He repeats his question, “Are you at peace with your decision?”
I say yes.
This keeps happening until he solemnly leads the doclingsgout
What would you assume was going on there?
Because I’d assume that I’d chosen to end my medical treatment and go home and die, or something along those lines.
But that’s not what he was doing.
His question was about whether I’d be at peace with getting the feeding tube that ultimately saved my life.
Guess what, doctor?
I’ve had feeding tubes for six or seven years now.
I’ve had my share of complications. Infections, abscesses, a tube wrapping around my intestine.
I. Still. Want. My. Tubes.
My tubes are life, not death. When you get a feeding tube, nobody should ever treat it as if you’ve just chosen to die. But they do.
For my 38th birthday dinner, I had soup: Sweet Pea (sweet peas) and Super Greens (spinach, broccoli, green peas, and coconut).
Then I had kombucha.
I enjoyed all of it.
And I’d never have reached the age of 38 without my feeding tubes.
So the answer to the question is still the following:
Yes, but your question and the way you’re asking it could get someone killed.
Stop treating people choosing to live as if we’ve chosen to die.
For decades, little noticed by the larger world, the disability rights movement has been mobilizing people from the back rooms and back wards, along with more privileged people like me, to speak plainly about our needs. We make demands. We litigate. Run for office. Seize the streets. Sit through the meetings. Mark up the drafts. That kind of work has changed the world and we need to continue to do it.
But we need to do something else besides, something that may be difficult but is, I think, vital. We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures.
I’m talking in part about the pleasures we share with nondisabled people. For me, those include social engagement of all kinds: swapping stories, arguing hard, getting and giving a listening ear. A challenging professional life. Going to movies, concerts, and exhibits. Wearing a new pair of earrings. Savoring the afternoon hit of Dove dark chocolate. I enjoy those pleasures the same way nondisabled people do. There’s no impairment; disability makes no difference.
But I’m also talking about those pleasures that are peculiarly our own, that are so bound up with our disabilities that we wouldn’t experience them, or wouldn’t experience them the same way, without our disabilities. I’m talking about pleasures that may seem a bit odd.
Harriet McBryde Johnson, Too Late To Die Young,
This one may take some explaining.
So I’m fed through a J-tube, short for jejunostomy tube. That means a tube that delivers food directly to my small intestine. This bypasses my stomach, which is partially paralyzed and may as well be a dead end where food is concerned.
So I don’t taste food, and I don’t feel the sensations of food in my stomach. Instead, liquefied food goes into my intestines through a feeding pump, very slowly. It has to go slowly because while your stomach can expand to take a whole meal, your intestines can’t. So you have to drip it in slowly, usually over a period of hours. Some people have to do it 24 hours for a full feeding, while other people can go faster. I used to do 24-hour feedings, but now I do 8 hours or less depending on how I’m feeling.
I get two kinds of food. One is a formula called Osmolite. The other is homemade vegetable soups. I cook the vegetables and put them in a high-tech blender that can liquefy anything. Then I strain them through a chinois so they can’t possibly clog the tube. The vegetables provide nutrients that the Osmolite does not, and help prevent c diff, which I got when I stopped eating vegetables this way. For more information on the risks of c diff in people who are tube-fed formula without vegetables, you can read the paper Tube feeding, the microbiota, and clostridium difficile infection by Stephen JD O’Keefe from the World Journal of Gastroenterology. Bottom line: The vegetables don’t just make me feel good, they also feed all my little symbiotes that help prevent c diff.
So here’s the joy part:
I think most people experience this feeling, but they never get to experience it alone, so they probably don’t notice it. Most people’s experience of food is wrapped up in sensations of the mouth and stomach. Taste, texture, smell, fullness. I don’t get any of that. Which means I get to isolate a joyful and amazing feeling that most people never get to experience on its own.
There is a feeling when you are digesting a food that is truly good for you. I get it from digesting vegetables most of all. Here, I am eating asparagus and split pea soup. The feeling is one of intense satisfaction, of rightness, of a subtle but inescapable pleasure that covers your entire body.
And once I am digesting this food, I get to feel that way without anything distracting me. No taste, no texture, no sense of fullness. Just the joy of digesting something my body very much needs.
I don’t think people who are fed by anything other than J-tube ever get to experience this feeling on its own. It’s an amazing feeling. I bet that if you ignored other sensations, you might find it underneath everything. But it’s a unique experience to feel it on its own. And that comes directly from being disabled and needing to bypass all the usual routes of food to your body.
Osmolite makes me feel like crap by the way. I’m thinking of going rogue and designing my own diet. But that would take a lot of work, so I’m not doing that right away. (I have other reasons too, like my high diabetes risk and the lack of formulas that address that until you already have diabetes, which I’m trying to avoid. It would be easier to design a diet similar to pre-diabetic diets, with specific attention to stuff that feeds your friendly symbiotes as well. There’s a lot of foods that overlap there, like resistant starches.)
People think that tube-feeding, especially J-tube feeding where you don’t even get to feel a full stomach, takes all the joy out of eating. But I have learned that when I digest foods that are good for me, I feel an intense kind of joy that I’m not sure most people ever get to feel as directly as I do.
And that’s what Harriet was talking about, these pleasures that are specific to being disabled. Not joy in spite of disability but joy because of disability. They are very real. And in a world that sees disability as nothing but tragedy and suffering and a fate worse than death, they matter a lot. Especially to people with feeding tubes and other things people are sometimes so terrified of they’d rather die. I love life, I love my feeding tube, and I love the unique joy of eating delicious vegetables through a J-tube without the distractions of my mouth and stomach.
I just got over a gnarly C Diff (clostridiumdifficile) infection that lasted from approximately November until May of this year. Here’s a link to the Mayo Clinic’s page on C Diff if you want to know more about it. It wreaked havoc with my health, including my ability to absorb the steroids I depend on for survival, and I was away from home then hospitalized for a long time. I had thought C Diff was something you got only from antibiotics or contact with an infected person. I didn’t know I was at risk from other factors, especially being tube fed nothing but formula. I was wrong. I want to tell you about the risk factors that exist, especially in tube feeding and how to prevent that.
This is gonna be a little long, but there’s a bolded section at the end that basically tells you which nutrients you need to add to your diet to be more protective against C Diff if you’re on an elemental tubefeeding formula as your main source of nutrition.
The biggest risk factor for C Diff is frequent contact with the healthcare system. Antibiotics are a risk factor. So are some other medications such as acid reducers, which I have to use in large quantities because of my gastroparesis, reflux, and aspiration risk. But the one risk factor that intrigued me the most, because it fit with the onset of my symptoms, is being tube fed nothing but a tube feeding formula without supplementing it in certain ways.
All of this is reputable science, by the way. This isn’t some kind of fringe thing. So we all have little symbiotes in our bodies. That’s symbiotic bacteria that live in our guts and often help us out with all kinds of things you’d never expect. Some of our symbiotes help protect us against C Diff. I know this may gross some people out. I think it’s amazing and cool that we have little symbiotes living inside us and helping us. I want to keep my little symbiotes healthy and happy. But I might be a very strange person, I admit.
Here’s an excellent overview from the World Journal of Gastroenterology: Tube Feeding, the Microbiota, and Clostridium Difficile Infection. So basically there’s a lot of risk factors involved with tube feeding elemental formulas, like the Osmolite that is my main food. One of those us that the elemental diets seem to feed C Diff pretty well on its own. But one of those risk factors is that the elemental formulas don’t contain some of the crucial nutrients that feed the symbiotes that protect us against C Diff in the first place. And that is something you can possibly change even if your main diet still has to be an elemental formula.
I got a high-powered blender many years ago because I was having weirdly intense and specific cravings for vegetables. I got a Blendtec, other people might get a Vitamix or similar. These blenders are expensive, and mine was a gift from a family member, but they are the only way to blend down food well enough to safely pass through a J-tube. In addition to a blender, I got a chinois (a kind of heavy-duty strainer), which lets me filter out any remaining tube-clogging residue while pushing through as much thick stuff as I can. I have had no problem getting the resulting blends down my J-tube as long as I blend thoroughly and use the chinois vigorously.
Anyway, I started supplementing my Osmolite diet with blended vegetables. I just went with whatever vegetables I seemed to be craving. And they were oddly specific cravings sometimes. I’d never eaten sunchokes in my life, and suddenly I was eating sunchokes constantly. There turned out to be reasons for this most of the time. My symbiotes must’ve been yelling “We’re hungry! Feed us!” in whatever way they knew best. When I added the blenderized vegetables to my diet, I felt a strong sense of well-being and my doctors told me there are nutrients in vegetables that we don’t fully understand yet. So they were fully supportive in what I was doing.
My developmental disability services agency had people in it who were helping me cook these vegetable meals. We’d basically cook the vegetables as if it was a regular meal, then stick it in the blender with some water, then strain it through the chinois. I know a lot of people compare these sorts of things to baby food, but I honestly think a better comparison is soup. So I just called it vegetable soup. And then I would periodically put small amounts of it down my J-tube using a feeding syringe, although you could probably use a feeding bag and pump if you did it right and made sure it wouldn’t clog any tubing.
Anyway, at some point the guy who was doing most of the cooking quit to take a different job. And my access to vegetables started getting more patchy. I think the agency thought that because I was on Osmolite already, food prep for real vegetables was a luxury. We were all about to find out how wrong that was.
I didn’t connect it to the vegetables, but for a month or two of less vegetables I was feeling lousy and telling my doctor something was going wrong in my body that was gonna bite us in the ass if we didn’t work out what it was. I didn’t know I was gonna get the butt plague, mind you. I just have a good instinct sometimes about things going wrong in my body. Without further information, though, we couldn’t find anything wrong.
So the vegetables stopped around September. By November I had nasty diarrhea every day. Like shart-level diarrhea. Leading to both yeast infections and bacterial infections of the vagina just for extra fun. There’s no pretty way of describing it. The butt plague is a nasty, nasty thing.
I’ve always had some absorption issues, but the C Diff kicked those into high gear. My absorption of my meds, including steroids, became erratic. Understand: I make no cortisol in my body at all. You can’t survive without cortisol. Not being able to absorb my hydrocortisone properly or consistently played havoc with my entire body and health status in ways I couldn’t comprehend. And that’s besides the ever-fluctuating levels of seizure meds and other things that shouldn’t fluctuate.
Dehydration was obviously an issue. The dehydration kicked into high gear one week when I got about half the developmental disability staff hours I’m supposed to get, mostly through subs who didn’t know what they were doing, and didn’t get any extra water for several days. I nearly passed out, had trouble breathing, had to raise my steroids just to be able to breathe. Wildly inconsistent steroid levels even with the high doses resulted in swinging from too much to too little steroids on a dime. It got dangerous. My body temperature started going outright hypothermic (94.3 was the lowest), I had more diarrhea because low cortisol levels will do that, and when my steroids were high it suppressed my immune system and allowed the C Diff to flourish even more. It was loads of fun.
At some point I gave my doctor the Bat Signal (“I’m gonna die, this is not a drill”) and he found the C Diff quickly. The antibiotics worked and then suddenly didn’t work and I was hospitalized. I’d already been living away from home about a month at that point due to a combination of being unsafe living alone and being too stubborn to go to the hospital. (They tried to get me to go to the emergency room for about two straight months before I allowed someone to call 911.) I got really weak from a combination of dehydration, adrenal insufficiency, and congenital myasthenic syndrome, and realized I was going to pass out or fall (I have severe osteoporosis and broken bones can trigger adrenal crisis) or shit on my friend’s floor or something, so I let her call an ambulance. I was hospitalized immediately and stayed several weeks.
In the hospital there were two or three main issues to sort out. One was the C Diff itself. Another was my steroid situation. So we discovered the inconsistent absorption and I was put on steroids through my chest port instead of my feeding tube. This vastly improved things. But I was still on a much higher dose than I should’ve been. It turns out that some of my meds might affect the metabolism of steroids.
But more importantly, I probably have an additional medical condition that can come along with adrenal insufficiency (and also two other things I have), and that responds to steroids. It makes my heart race and I get out of breath when I stand up sometimes. So I’m still on an ungodly dose of steroids — transitioned back to getting them through my gut, at least, though — which puts me at continued risk for C Diff among many other nasty things. My severe osteoporosis (I’m 37, I’m told my bones are more like 95-115 depending on the bone, I’ve broken ribs by sleeping on them wrong and have a stress fracture in my spine nobody knows where it came from) is partly from the steroids. I’m at high diabetes risk. Steroids are the most dangerous meds I take and the most necessary meds I take. It’s an ugly balance to have to strike. There are no good answers and for many people with severe adrenal insufficiency it’s the steroids that keep us alive that ultimately shorten our lifespans.
Anyway, the most important thing for you to know are which nutrients your symbiotes need that you’re not getting in an elemental formula like Osmolite or Nutrin. There’s basically three important ones, although I’m sure there’s plenty of others:
You can look up which vegetables contain the most of those nutrients, and figure out how best to get them for yourself. Remember those sunchokes I was craving all the time for no apparent reason for the first time in your life? Sunchokes turn out to have more oligopolysaccharides than any other vegetable on the planet. Yeah, my symbiotes have me well-trained, I guess.
So definitely look up which vegetables you can get those things out of. And then I’d say go with a combination of that knowledge and what vegetables feel right to be eating. You might not have that this just feels right thing and that’s okay. But if you do, run with it. Every vegetable I was craving (and they were weirdly specific and intense cravings) turned out to be high in at least one of these three nutrient types. Your mileage may vary. And always check out the actual scientific information on these vegetables, your instincts are no substitute for that. But my gut instinct (no pun intended) turned out to be shockingly accurate, and you might find the same.
My doctors, for what it’s worth, are 100% supportive of my efforts to get vegetables back into my diet by any means necessary. They agree with me that this was a major risk factor in my getting a C Diff infection. And once infected, always at risk for the rest of my life. So this is a very important thing to try and prevent, even if you seem to have no symptoms. C Diff can be dangerous, is highly contagious (I was on isolation protocol my entire hospital stay even after I got over it) and can be resistant to antibiotics. Even healthy people are turning up with C Diff these days. Trust me, C Diff is something you absolutely do not want if you have any way of preventing it.
So if you remember nothing else from this post, remember those three nutrients:
Find ways to get these things into your body if at all possible. Keep your little symbiotes happy, they need you and you need them, that’s how symbiosis works! And if your symbiotes are happy, you’ll likely be happier (and healthier) too. And stand a better chance of fighting off the Dreaded Butt Plague.