They’re letting me order meals from the cafeteria, get someone to take them home and, at home, stick them a blender and turn them into something I can put down my feeding tube.
I’m exhausted from the spotty and/or crappy eating and am just happy I can do this and that there was very little fight involved. I was worried there’d be a fight. There hasn’t been. I’m just… relieved and happy, right now. And worn the hell out. And just, mind is blank, BUT I HAVE FOOD. It may not look very appetizing but it actually smells great and feels good the little I’ve been able to take in.
Their patient menu here is amazing, it’s like restaurant food. I seriously get pissed every time I stay here, because the food is the best thing about here and I rarely got to eat it even when I was
Grilled Tofu – Served on a bed of Kale, sautéed with Wheat Berries and Lentils.
Hummus Plate – Red Pepper Hummus, served with Pita Chips
And I think my staff person threw in some things from breakfast, so plain yogurt, cream cheese, and soy milk may be involved.
And I’m just… exhausted and relieved right now, my body’s busy combobulating itself. I think I just got discombobulated from all the food confusion and it’s just like when my cat got upset and recombobulated, my body recombobulates on its own without my having to do much other than, well, eat and all that..
And right now I just feel like I need to sit around combobulatin’. Not totally sure, but pretty sure. Combobulate away.
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.