Feeding tubes and weird ideas

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My favorie BADD post: Tube-ageddon.

I haven't had much time to write anything here about the hell I went through getting my GJ tube. I had every indication for a GJ tube. I had gastroparesis so bad it was starting to affect my breathing, in a way that doctors said was likely to result in infection after infection until I died. From the emergency room onward, doctors were saying my best hope was to get a feeding tube.

Yet the pressure I got from doctors, while in the hospital for one of those infections, was to just keep getting infections, go home, wait to die. Most of them wouldn't say that outright. But some of them did. Some of them we confronted and they absolutely agreed that the only alternative to the tube was death — which could have happened to me by now, without the tube. But they still insisted on telling me not to get the tube, basically that I was better off dead than with a tube. We had to rally a bunch of people on the Internet to call the hospital before they suddenly changed their tune. My pulmonologist told me she could tell exactly when I started getting people calling the hospital, because the tone in my charts changed instantly to “let's get her the tube after all”.

Most people think of all feeding tubes as the same, all reasons for getting them as the same, and so they believe in false generalizations about their capacity to prevent lung infections, or indeed cause them. But they aren't all the same. They're all different, and the reasons for getting them are all different.

I have gastroparesis. That means my stomach is partially paralyzed. In my case it became severe before it was diagnosed last year and confirmed with testing this year. It's probably due to neuromuscular problems inherited from my mother, who has autonomic neuropathy among other things, a common cause of gastroparesis. My symptoms are similar to hers so doctors are assuming whatever we have is related. Anyway, it makes food remain in the stomach a long time. After awhile, this means that you can't eat very much and you drop a lot of weight. (I may still be fat, but they tell me by the end I was burning muscle.) by the end I was having trouble keeping down two small cartons of Boost a day, which isn't enough calories to live on. I was already on a liquid diet so there was no less food I could keep eating.

It also meant that the stuff staying in my stomach was riding up my esophagus again on gas bubbles formed by food sitting in my stomach for ages. I could feel it happening several times a day. I'd belch and food or bile would ride up with it. If this happened overnight, my bipap machine would shove the stomach contents down into my lungs from my esophagus. This began happening several times a week, and from January until March I had about five lung infections requiring antibiotics. I never stopped taking antibiotics, by the time one course was over I'd be on the next. Which is dangerous in its own right.

So when I showed up in the ER a few days after a CT scan showing what they called a “ground glass appearance”, they had no problem admitting me into the hospital, and even in the emergency room they were telling me if I wanted to live I needed a GJ tube. This wasn't news to me. They had been talking about a feeding tube since last fall, when one more nausea med added to the five they'd started me on, made me able to go home without one instead. I'd been discussing with my friends what kind of feeding tube served my needs best as a person with gastroparesis. And the GJ tube had always seemed like the best option.

A GJ tube is like a combination of a G tube and a J tube. Half of it goes into the stomach, which is a G tube. The other part goes into the first part of the small intestines, which is the J tube. The G tube gives you the ability to drain your stomach contents out into a cup, and dump them down the toilet. This means that if you do it often enough, you won't have anything building up in there and going up into your lungs. Right now, even bile and stomach acid can build up to dangerous amounts because of my stomach not emptying often enough, so I take acid reducers and I drain my G tube several times a day.

The J tube portion is the part that stuff comes in through. I eat through it. I drink through it. I get all of my medications through it. This means that nothing has to come in through my stomach. Which means we are bypassing the worst part of my digestive system. Not that the rest of my digestive system is wonderful. My esophagus is slow, my stomach is slow, and my bowels have been producing blockages since I was a teenager. But with liquid food going into my small intestine at a fairly slow rate (one feeding in roughly twenty four hours, I wasn't able to handle the twelve hour version without getting very sick) I seem to be able to handle things much better than when it was going in my stomach. I love it. It's so much easier than feeling horribly sick all the time.

I still take nausea meds, but half of them have been changed to PRN instead of daily. So daily I take Phenergan, Reglan (which speeds up my digestive system), and Marinol. And I can also take Benadryl. Lorazepam, and Zofran as needed. I used to have to take all six of those things every day, so this has really cut back on the amount of medication I need, which is good because every single one of these meds is severely sedating and it was badly affecting my ability to think straight. If I were still trying to eat, I would be taking every single one of those nausea meds at the maximum dose, and still wouldn't be able to eat enough to maintain my weight.

[Photo of me holding my tube. The J tube section is visible, the G tube is hidden behind my hand, and there's a little cloth thing from Trendie Tubies around the base, with owls on it.]

But I had to fight for this tube. Even though it was the only way to save my life. I had to fight against people who were certain I was better off dead. And I needed the help of a lot of people on the Internet, to do it. When I did get the tube, it was done without a working anesthetic. And even though the local anesthesia didn't work on me, even though I was yelling and screaming, they didn't stop to give me more, they just kept telling me that the Versed meant I wouldn't remember it later. Yeah right. It seemed like the entire process of getting the tube was one giant clusterfuck after another, and like people were making it as hard for me as they possibly could. (Later, when I had to get the tube replaced, we discovered that Propofol is the med, in combination with others, that really does the trick to keep me unaware of what's happening.) They treated me like a child, repeatedly expressing the fear that I would pull the tube out like young children often do, and blaming me when part of the tube got lodged inside me, probably as a result of over zealous physical therapy early on that was a clusterfuck in its own right.

But I got the tube and I couldn't be happier with it. I feel happier and healthier. After aspirating reflux several times a week for months, I haven't aspirated a single time in the month or so I've had the tube. My nausea is well controlled. My brain and body work better. Despite a couple complications since then, it's still the best thing medically that's happened to me in the past year. And I'm still alive, which even by now I might not have been if I kept getting infection after infection.

[The x ray showing the tube inside my body.]

Why did I have to fight so hard for it? I see two major reasons. One is that I'm perceived by medical professionals as someone whose life doesn't matter much, doesn't have much quality of life. I'm autistic, they read me as severely cognitively impaired, I am in bed all the time, they don't see that I enjoy living as much as anyone else does, and they make that decision somewhere in their heads without even noticing.

The other reason is the way medical professionals see feeding tubes. I've been trying to read the writing of nurses and doctors to find out their views on these things. Not just the horrible ones. The ones who snark at patients on their blogs. But the ones who think they're compassionate and sympathetic and good at their jobs. But in one area that makes no difference:

They all think of feeding tubes as the beginning of the end. They see getting a feeding tube as the first sign that your life as over. Possibly that you belong in a nursing home, as if anyone does. When I made out my living will, the first question of “Where do you draw the line where you want to stop living?” was whether I wanted to live if it meant I needed a feeding tube. They see people with feeding tubes as the first stop on the route to a living death. Other things they see that way are using a ventilator, having a trach, needing any sort of similar mechanical assistance to survive.

My friends see it a different way. They see me as some cool kind of cyborg, with the oxygen, the feeding tube, and the Interstim implant that prevents spasticity in my urethra, allowing me to urinate. They say the sounds my oxygen concentrator makes sound almost steampunk. But then all my friends are disabled, they see adaptive equipment as cool, and as a means to living, not a sign you're dying.

Medical professionals have been shown time and time again, to rate disabled people's quality of life lower than we rate our own quality of life. And yet time and time again, they see themselves as the experts on what our real quality of life is. One reason I try to keep my lungs and my guts in good condition is that as a person who is autistic and physically disabled, I know that if I ever got bad enough to need a transplant, I'd probably die. Because they would take one look at how I sound on paper, and they would decide my life wasn't as worth living as that of a twenty year old who wasn't disabled except for the effects of their lung problems or digestive problems. (Lung transplant is the end of the line for severe bronchiectasis. My bronchiectasis is mild, I'm working hard at keeping it that way. Transplant is also the end of the line for very severe gastroparesis combined with other gut problems. I'm hoping I don't get to that point despite severe gastroparesis. Given how hard it was just to get a feeding tube, which is the standard treatment when you start aspirating this much and being unable to eat even a liquid diet, I don't know that I stand a chance at making the transplant list should I need one.)

I also had trouble getting home. People were asking me if I belonged in a nursing home, or at least in twenty four hour care. I'm not sure why. It's not like it's hard to care for a GJ tube. It's unusual, but it's certainly easier than my old med regimen, which was truly difficult and time consuming. Now we just mix them up, put them in a syringe, and stick them straight into the tube. Easy. Eating is easier too, no more worrying I will throw up, and you only need to set up the food once a day and press a button on a feeding pump. But everyone has this illusion that it's incredibly difficult, and the VNA loves to take people with tubes and stick us in nursing homes claiming they can no longer care for us on the outside.

[The feeding pump on an IV pole with the food (Osmolite, low fat, high protein, no fiber) hanging above it.]

I still don't understand what the big deal is supposed to be. By the time you get a feeding tube, eating is really hard. Either you're having swallowing problems, or something is wrong with your stomach. In my case, my stomach was emptying so slowly that I was constantly severely nauseated no matter how little I ate, I was dropping weight way too fast, and I was aspirating reflux caused by all the food sitting around for ages. I was quite possibly going to die from repeated infections. How the hell is a feeding tube supposed to be worse than that?

I can't even begin to comprehend the fear of these things. I mean I literally can't do it. It makes no sense. It's all based in prejudice. It has nothing to do with the reality of a feeding tube.

I thought the worst part would be not being able to eat. The most I can do is drink a tiny bit of ginger ale, and I have to be very careful even with that. But I don't miss food. The feeding tube ensures that I am never hungry, and always have the nutrients I need. The only times I have ever started craving food, were two separate days where I spent all day at the emergency room unable to use my tube. Each time I came home and wanted to eat or drink something I didn't normally want to eat or drink. But when I'm getting food regularly, it's not a problem. I barely miss eating at all. I never even think about it. Even the vivid dreams I'd been having about all different kinds of food, all those months on Ensure, have gone away. My body seems perfectly satisfied with what it's getting, and it doesn't crave things unless I can't use the tube.

And it makes everything easier. Food is easier. Medication is easier. Absolutely nothing is any harder than normal. It's more like dealing with something easy and mechanical, than dealing with anything hard. We did learn the hard way to flush it with coke after every medication, because by the time there was a clog, you couldn't get enough coke in to dissolve it. So we are dissolving the clogs before they can even form, by leaving coke in for awhile after every single time we use meds. I've also discovered it's possible to reduce the pressure inside me — which can prevent the meds and water from flowing into me as easily — by relaxing my body, especially my rectum, and then everything usually flows in pretty easily. So there are a few tricks, but it has overall been much easier than my life was before I got the tube.

So what is so scary? I don't know. I can't find anything at all scary about this. It doesn't mean anything horrible. It means I'm alive. Being alive is a good thing. I don't fear death, but I only get one chance at life, and I don't want to die just because someone else has decided my life isn't worth enough to them. And so I'm very much interested in anything that will keep me alive longer, whether it's a feeding tube or any other “scary” device used for keeping disabled people around longer than used to be possible.

A lot of people I know have those devices, the ones that medical professionals think your life is over. Feeding tubes. Trachs. Ventilators. Catheters. Ostomies. Central lines. All those things that seem to scare people to death, even though there's nothing scary about them. They prolong life, not end it. And I'm furious at every single doctor who urged me to go home and die rather than get this feeding tube and get a chance to live longer. That is simply not their decision to make, and they were bound and determined to make it for me until I got enough people on my side to convince them that the entire world was watching the crap they were trying to pull.

I am going to work as hard as I can, to change hospital policy so that nobody gets pressured in the way I did. It's incredibly difficult to deal with pressure to die, when you're already sick and exhausted and have no energy to fight back. And they do it in sneaky ways, so that if I had been delirious or something, which I often am in the hospital, I might not have recognized what they were trying to do. My experiences are far from unusual, many disabled people have been encouraged to die rather than get a feeding tube, or a vent, or something else that would allow us to live. My mother, who has many of the same conditions I do, is going through a mess where doctor after doctor refuses to treat her or perform surgery on her, and she keeps having to go back to the Mayo clinic because they're the only ones who seem to be committed to making sure she can live as long as possible. And as a disabled senior citizen way below the poverty line, she gets the “your life isn't worth it to us” thing from at least three different angles. This stuff isn't unique to my life, the pressure to die is everywhere.

But most disabled people, like most people in general, prefer to be alive. Being disabled rarely changes that fact, not on its own. And the fact that anyone thinks we ought not to, that their pity goes so far as to be a death wish aimed at another person, is so disgusting I don't even have words for it. But they are the ones who are disgusted at my advance directive, which tells them to keep me alive no matter what. I can hear it in the sound of their voice when they ask me about advance directives. Advance directives are supposed to be about making your own choices, but the choice to live is the least respected among them. They would rather I not be here by now, rather I got my sixth, seventh, eighth infection until my lungs finally gave out. I refuse to give them the satisfaction. I love being alive and a tube doesn't change that one bit, in fact it makes my life better.

 

15 responses »

  1. I have to agree – your cyborging seems pretty cool. It’s good to hear it solved so many problems for you. The attitudes of medical professionals you describe is extremely frustrating to me because not only do they consistently rate PWD quality of life lower than we rate it ourselves, but they also consider their ratings objective and our ratings subjective.

    I am glad that you were able to get through all that prejudice to get your tube. I am frustrated that all that effort was necessary in the first place.

  2. I spent one year as the head teacher in a SPD (severe and profound disabilities) where only two children were nourished without feeding tubes. I still laugh and marvel at the characters that they were. To think they weren’t deserving of life…seems vicious.

  3. I heard about you from Love SS and love your blog. i think all health professionals should take an ethics course based on this. You are IMPORTANT. Thank you on behalf of the human race

  4. I’m really sorry that getting this tube was so difficult for you. People suck. The healthcare system sucks. I have cerebral palsy and even though it’s mild I’m still met w/ people who don’t take me seriously…and yet I have never been denied a medical procedure I needed. I’m so sorry that happened to you. I hate that people think one life is worth more than another. We are all human.

    I’m sending vibes for your continued healing. <3

    • Yeah, but that’s really hard for people with j-tubes. My j-tube clogs all the time even on an anti-clog formula. It’s difficult to make food that doesn’t clog it. That’s why most blended-food tubies are people with g-tubes or NG tubes, not people with j-tubes.

  5. My son was given the same attitude by the counselor/palliative care people at a hospital this year. He has Cerebral Palsy and is 38 yrs old. He was given a j tube because his g tube was no longer usable due to gastro paresis. These people were hovering over me, encouraging me to send him to Hospice, to die a comfortable death. They too, we’re preaching quality of life. My son loves life! I finally got so upset with these people, that my daughter called them to leave me alone!! I am so happy that you were able to fight off the “death mongers” too! God bless!

  6. Glad to hear the tubes have made such a huge improvement! But the way you had to fight for them is just awful. I think a third thing that factors in is how people always seem to fall back on “me adult, you child” mode. They don’t like their authority challenged at all. And they don’t see us as adults. So they should be the ones making the decisions, not you. SO WRONG. It makes me so angry.

  7. You should be proud of yourself for having the strength to advocate for what you need, I know I have a hard time asking for help sometimes, and my life is not (currently) directly at stake.

    Granted, being fed through a tube does sound kind of sucky, but it’s definitely a lot better then being dead. As long as my mind still works, I want to be alive.

  8. @[redacted] and anyone thinking along the same lines:

    Short answer: I haven’t maintained my weight at all. The fact that I continue to be fat doesn’t mean I didn’t lose a lot of weight very fast, it just means that I was much fatter to begin with. ;-)

    Long answer: I weighed a little over 240 pounds (108.8 kg) when I stopped being able to eat solids. I now weigh a little under 195 (88.45 kg). I lost about 40 pounds (a little over 18 kg) rapidly last summer when I stopped being able to eat solids (taking me to 200 lbs, 90.7 kg), gained 20 (9 kg) back on a liquid diet after my fall hospitalization (taking me to 220 lbs, 99.8 kg), lost 27 pounds (12.2 kg) during the feeding tube crisis last spring in a matter of weeks (193 lbs, 87.5 kg), gained 17 of them (7.7 kg) back (210 lbs, 95.25 kg) pretty rapidly after getting the feeding tube, and now I’ve much more slowly lost weight until I’m back to roughly 193 (87.5 kg). So in total I’ve lost 47 pounds (21.3 kg) over the last year, with a whole lot of rapid weight fluctuation as my ability to take in food got better and worse (and I’m not sure why I’m slowly losing weight now). And much of it rapidly when suddenly unable to eat. (Although after I got the feeding tube, the weight loss has been slow enough they don’t consider it a big problem. Although it would be if I had been thin to begin with.) All of this is in my medical records since they do weigh you periodically during doctor’s appointments and definitely during hospitalizations for food issues.

    And what I have isn’t cancer, so the pattern of weight loss is completely different anyway, comparing gastroparesis to stomach cancer is completely apples and oranges. People with gastroparesis sometimes lose weight, but other times weight gain is actually a symptom of the disease, because of metabolic changes in the face of less nutrition. Gastroparesis does not automatically result in instant and catastrophic weight loss, although it can. Although I was told last fall that my weight loss was fast enough that I was burning muscle and putting my heart in danger. Such problems don’t wait around until you are thin, to start occurring, and it’s even possible to die of weight-loss-related complications before you ever become thin.

    But the bottom line is, they don’t give out GJ tubes to people who ask for them. If I hadn’t badly needed the tube, they would’ve simply denied it, end of story. I needed the tube for two reasons: One, I was able to eat less and less food. But two, and actually more importantly, my gastric fluids were staying in my stomach instead of passing to my intestines, and that made them go up into my lungs and get pneumonia. I’ve had it around six times in the past year. The feeding tube allows me to drain the fluids and I’ve only aspirated and gotten pneumonia once since getting it (after which I installed a drainage bag and everything has been fine). So basically, the reason that they were constantly trying to talk me out of the tube is that they knew that denying it outright wouldn’t work: I needed it, i had extensive documentation of both sudden weight loss and pneumonia, as well as documentation of test results showing the problem in question was gastroparesis. Plus hospitalists had been recommending feeding tubes since last September, and the emergency room doctors who admitted me had also recommended one, as had my primary care doctor. So the fact that I have one at all means there was plenty of proof I needed it. So does the fact that rather than denying the tube, they resorted to persuasion, because denying it wouldn’t have worked. If I hadn’t needed it, I wouldn’t have it, and there would’ve been no drama there would’ve just been a flat outright denial.

    Feeding tubes are given to people for a large number of reasons. Only one of them is being underweight and needing to be fed until they gain weight again. Protecting people from the effects of catastrophic weight loss and malnutrition is another reason, and that can happen regardless of what weight the person started out at. And in very specific cases, they’re given to prevent things like aspiration pneumonia (yes, I know some feeding tubes can cause it, but mine has reduced it to practically none). You don’t wait for a person to starve to death, if you know they can’t take in enough food. You get the food into them any way you can. What I was told is that I should be maintaining a stable weight, it doesn’t matter what the weight is as long as it’s roughly stable and not dropping in huge amounts like it did twice before for me. They’re also given to people who can’t swallow, and people whose stomachs don’t work so that you can bypass the stomach and go into the intestines. Which is also what I needed — and waiting around until I was skinny would’ve been counterproductive even if I didn’t manage to die first. If someone can’t take in food through their stomach, you find another way, you don’t sit around and watch them starve and dehydrate until they meet a particular set of weight-related criteria.

    I’m saying this for people who might not be familiar with gastroparesis. From your tone, I doubt you’d be convinced even if you’d been around watching me and my doctors closely for the past few years.

    For people interested in gastroparesis and weight gain (because it’s not always understood by doctors, and if you’re gaining weight and haven’t got to the point where you’re losing, you’re less likely to be taken seriously even if you’re eating less and experiencing more nausea than you used to)…

    Here’s an interesting post and podcast by a gastroparesis patient who’s also a certified nutrition counselor:

    http://livingwithgastroparesis.com/gastroparesis-weight-gain-faq/

    Sorry I don’t have a transcript for that.

    But the weight gain is actually a well-known thing among gastroparesis patients, and not all gastroparesis patients are skeletally thin. (In fact since gastroparesis is associated in some people with diabetes, and type 2 diabetes is associated weight gain, it makes sense that many people with gastroparesis are fat.) In order to become super-thin (at least with my body type) I’d have had to have lost about 130-140 pounds (59-63.5 kg). At the rate I was going, I would probably have died of complications of rapid weight loss before I ever got there. As it is, I actually lost more weight than you did in roughly the same period of time, but losing 12 kg (26.5 lbs) on me doesn’t look like much. That would’ve been going from 240 pounds (108.8 kg) to 213.5 lbs (96.8 kg), which surely you’d agree does not outwardly look that different from each other considering both are quite fat.

    But actually even on the feeding tube I’m not maintaining weight. I’m slowly losing it. Doctors aren’t concerned at the moment because the weight loss IS slow. But it’s still weight loss. So even though I’m fat, I’m still being a stereotypical gastroparesis patient at this point (one who loses weight, and can’t seem to maintain it) even though I haven’t instantly lost all my fat at once. If they had waited until I was thin to get me a feeding tube, I wouldn’t be here, either from complications of pneumonia (more likely) or malnutrition (if I was lucky enough to stop aspirating somehow).

    Unfortunately the prejudice that says you must be super-skinny in order to have lost significant amounts of weight can result in extra suffering, illness, and even death for people with gastroparesis who happened to gain weight rather than lose it, or to have been fat enough to begin with that even a significant weight loss left them… still fat. Are you saying that I should have somehow rapidly lost 5 times as much weight as you did, before the effects of rapid weight loss would have mattered? Because that’s not what actual doctors think. It’s only what armchair doctors think. I’ve even seen fairly thin people with gastroparesis asked questions like this because they weren’t completely skeletal before they got their feeding tubes, or (even more ridiculously) because they WERE skeletal before they got their feeding tubes and the feeding tube helped them gain weight again! (And if you’ve starved for awhile, it’s pretty common to become overweight once you get a normal amount of food again. That’s how I initially became overweight in the first place.)

    But bottom line, short version: They don’t give out GJ tubes unless you need one. Period. No amount of pressure on the hospital would have resulted in them giving me one if I hadn’t needed one. And if I hadn’t needed one, they wouldn’t have been walking into my room every day trying to persuade me not to agree to a feeding tube, they’d have thrown me out on my ass. And insurance would’ve never covered it. So the existence of the feeding tube means they had all the medical evidence required (which was considerable, especially since they’d had 5 weeks to observe me constantly last fall, as well as numerous scans and studies and weights and so forth), and that’s really all you need to know.

    • I just realized the comment I was replying to was not made in good faith, and removed it. I wasn’t comfortable before, but I was willing to explain things because I thought it was understandable that someone could simply see that I’m still fat and, not seeing me on any sort of everyday or direct basis, not notice the dramatic weight loss that everyone else in my REAL life has noticed and pointed out and worried about.

      I only really have one thing to say to people who come here in bad faith:

      I just went through hell. My last year has been really bad and really scary and has required a lot of strength and effort to get through. I haven’t gone through all this, and faced possible death several times, to get pushed around by people with a grudge or an agenda. And I really haven’t gone through it to put up with fat hatred from anyone. So leave me alone. I have more important things to deal with.

      And FFS if you’re going to compare how much weight you lost during an unrelated illness, to how much weight you think I didn’t lose, at least figure out that it looks silly to do that when I lost far more weight than you did? I really did burst out laughing when I converted those kilograms to pounds and realized what was going on.

  9. @Andrea

    I feel like it was more other people that helped me with this than me myself. There was a point when I really didn’t have the energy to keep fighting. But I had my DPA, and a woman from the state Protection and Advocacy, and a friend from the next state over, and all the people on the Internet who rallied around me. And that’s what really did it. Most of what I did was just keep saying “No, I want the tube” every time they came in and told me I shouldn’t want it. Which, granted, is hard enough when you’re so exhausted from pneumonia that you’re into ‘negative spoons’, and being put under constant pressure.

  10. @Nancy

    I am so glad you got treatment for your son. Gastroparesis is bad enough without people encouraging you to “let nature take its course” (a euphemism for what’s often a pretty brutal death) and the like. The weirdest thing to me was the guy who, once they’d decided to give me the tube, came into my room and solemnly asked me, three times in a row, “Are you at peace with your decision?” He sounded as if I’d decided to die! Yet that was his reaction to me deciding to live.

    I’ve since found out that many medical people see feeding tubes as a living death, a nightmare without end, and too undignified to justify living with them. Which is bizarre. I’ve had a feeding tube for… wow is it almost six months now!??! And even though I’ve had very painful complications, and even though the anesthesia didn’t work when they were putting it in, and even though they did their best to put me through hell, I STILL love life with the tube and honestly can’t figure out what the fuss was about. Without it I could be dead by now. I’m certain which one I prefer.

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