He’s made a truly miraculous recovery, but even several years later he still stuns me occasionally with remarks from his time in the PICU; a time I was assured, due to a constant versed drip, that he’d be left with no memory of at all.
Best wishes to you! I’m enjoying your blog immensely!

Thank you so much for writing and sharing this and all your replies. You are very generous. Oh, and “arm chair doctor” is awesome. Definitely using that. These attitudes are horrendous. I am very sorry that you, and anyone, has to face them. You are doing a super good job of advocating for yourself, even though you definitely shouldn’t have to. Collecting people around you for support, and being able to keep saying no are huge.

My daughter had a tube for two years (NG and then G) as a toddler. She had a brain injury during birth that made it very difficult to control the muscles needed to eat. Feeding took forever, it was painful, and it was always a family fight because we wanted her to get enough food to live but she was afraid of eating (with good reason).

After the NG tube was out but before the G tube we had to make a decision about whether to get her a G tube. We were really scared about choosing to do the tube, and there wasn’t much support from doctors or nurses around the decision. They said it was up to us. (My daughter’s therapists were much better and more encouraging.) Her gastroenterologist did explain the benefits though. On the other hand he said we might have a harder time accessing therapy for her if she had a tube (which wasn’t true in the end). When we decided to do it the nurses and resident who admitted her for surgery were very judgmental. As if we were bad parents (it seems like they thought we just didn’t want to put in the time to feed her) and as if she didn’t need it. The last thing you need when your toddler is going in for surgery is a guilt trip. And, in your case, no one should be guilt tripped for choosing to survive! That is atrocious.

The worst part is that we, as parents, resisted the tube because we were worried that it would mean she wouldn’t be okay, that she would be disabled. That was such bullshit, and I am very sorry for it. I had a lot to learn. Part of my fear came from feeling very vulnerable as a parent. I was worried because if the person I love most depended on a tube to eat, what would that mean if we couldn’t have a tube? I was very afraid and I think I wanted to pretend that everything was fine. Now I wish we had gone to a G tube right away. The NG caused painful reflux and the time between the two tubes was such a struggle.

Getting the G tube was definitely the best thing we could have done. In reality it meant freedom. No more fighting, no pain for her, more time to do family activities and fun things, a chance for her to learn to trust food by just playing with it, weight gain and enough nourishment. Her muscle control improved and she is able to eat on her own now, partly because she had the time to develop without fear and fighting. So the idea that tubes mean living death is just bunk, prejudice, and it is even more incomprehensible when it means life, living, the ability to eat to live.

The bottom line is that disabled lives are just as valuable as any other lives. We don’t have to be identical to be valuable. Thanks so much again for sharing.

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.

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.

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.

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.

Oh wow it’s good to hear from you, I haven’t talked to you in ages. And thanks. I am sorry how much I worry people sometimes.

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.