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10:32pm August 15, 2014
Anonymous asked: Ok so help me. I was kinda diagnosed with gp, but I've never seen a dr for it. I was first diagnosed with bulimia and due to it, gp. A year ago I was then diagnosed with type 1 diabetes. My symptoms are getting worse and I'm not sure what to do. Also, I was wondering if it would be odd to just ask for a feeding tube because I feel like it's be a lot easier for me to cope with. Or if tubing is an option. The only thing I know for sure is that I can not continue with the symptoms. Thank you!

I honestly don’t know how to get care for gastroparesis, because by the time I was getting care for it, I was being hospitalized for the consequences of both the not eating and the aspiration.  So they brought up the feeding tube first, and I had a fight to get the feeding tube, but I wasn’t the one who had to put the feeding tube on the table, so to speak.  They did that.  They just didn’t think I would want to live with a tube, and did their best to convince me my life would be miserable if I didn’t die.  I disagreed.  And now I have the tube.  But I unfortunately don’t have a lot of advice.  

I see so many people with gastroparesis on here getting substandard care.   People getting only one nausea med (I’m on six separate ones and it barely gets me by) and then being told “If a bit of Zofran doesn’t work we can’t help you.”  People getting by on the bare minimum of food and getting accused of not wanting to get better.  People who unfortunately end up exaggerating their lack of food intake, because they think only then will a doctor take them seriously, and then the doctor takes them even less seriously (because there’s no such thing as a person who can’t even keep down a sip of water for six months straight and is still alive with no medical intervention, and looks perfectly healthy at that, and doctors know that, and then they dismiss everything else you have to say, even if all you were trying to do was put some pressure on them by saying “This is serious dammit”).  And just so many different ways we get dismissed and mistreated and not offered a full range of treatment options.

But I don’t know enough about how to get the right ones.  I know what I did, but it was specific to my situation.  I hate to pass the buck, but have you contacted organizations like G-PACT?  I would hope they would have a lot of information, but in my experience organizations like that can be either really good or really bad, anything in between, too.  Or they can be great for some things and terrible for others.  

If you’re looking into feeding tubes, though.  Do your research.  The main tubes that are inserted through the abdomen are:

* G-tubes

* J-tubes

* GJ-tubes

Each one has variations too, like tube versus button.

G-tubes alone are generally useless for people with gastroparesis.  It puts the food into your stomach.  Where the food sits, and sits, and sits, just like it would’ve done if you ate it.  However they can be useful for draining fluid and bloating from your stomach, which ranges from pain control, to a life-saving measure if it were to reflux into your lungs and give you aspiration pneumonia, which kept happening to me.  Mind you, the advice they give you on how to “vent” or “burp” a g-tube is nowhere near the advice you’ll need to learn in order to do it right.  Hospital nurses barely know anything about doing it right, they think you just open it up and stick a cup under it and everything will come out.  It’s far more involved than that for me, I often have hour-long burp sessions that involve everything from swallowing air to tightening my stomach muscles to moving the tube up and down to sticking a bent paper clip into the tube to break up blood clots (I don’t recommend that last one unless you know what you’re doing, seriously no doctor or nurse in their right mind would recommend that).

J-tubes alone are great if all you need is to have your food, water, and meds diverted around your stomach into your small intestines.  This presumes your small intestines are working enough to take the load.  (Mine seem a bit slow, so I have to do a slower rate than my target feeding rate.  Target feeding rate being 90 or above, my feeding rate is 45.)  This can literally be life-saving if you can’t get enough food in your stomach, or if you are throwing up everything in your stomach.

GJ tubes combine a G tube and a J tube.  This means that the J tube lets you bypass your stomach for food, water, and meds.  And the G tube lets you drain your stomach of any excess fluid and gas/bloat.  But GJ tubes are more complicated and clog and break easier.

I have a GJ tube.  I love my GJ tube.  I love it like it’s a little family member attached to me.  But not everyone loves their feeding tube.  To some it’s at best a necessary evil.  I’ve had lots of complications but at the same time i’m still alive and I feel so happy to be alive.  

Obviously if you’ve got an eating disorder you’re not going to be necessarily ecstatic about a feeding tube given it means you’re kind of forced to eat a certain amount.  Although actually with my history of orthorexia, the feeding tube has felt like a big relief because I can no longer obsess about what foods are going into me and what ones aren’t.  I didn’t realize how much I still thought all those old thoughts, until I started tube feeding and realizing most of my ED thoughts were gone.  But then it was a specific case, may not apply to everyone.

That’s what I keep trying to emphasize – in HUGE BIG letters, YMMV.

You should research all the tube types yourself, and also the nasogastric and nasojejunal tubes, although if you want a long-term feeding tube it’ll likely not be nasal.  Be aware of all of the risks and benefits of each one.  

But be sure you’re getting the right risks and benefits.  Some people have told me “How can you prevent aspiration with a feeding tube, feeding tubes increase aspiration risk!”  

But they’re looking at a total percent of all of people who use every kind of feeding tube, for every kind of reason.  They are not looking at one tiny little person (okay I’m actually a big fat person, but I feel tiny after gastroparesis lost me 70 pounds, even though steroids have given me 20 of those back) in one tiny little place who has gastroparesis and reflux and central/obstructive sleep apnea and bronchiectasis.  

My gastroparesis makes my bile build up in my stomach, my reflux pushes it up my esophagus, and my bipap pushes it down into my lungs, where my bronchiectasis turns it into aspiration pneumonia really fast.  The g-tube half of my GJ-tube has turned my major aspirations from several a week to a few a year, by draining out the bile before it can build up and reach my lungs.  I have to wear a drainage bag whenever I’m not actively removing the bile myself.  But it works.  

And this is not the situation of someone else who has a totally different feeding tube for totally different reasons.  You can’t govern choices like this entirely by percentages, when the percentages are obscuring real differences between people in different situations.  One mistake people also make is assuming that because feeding tubes do badly in elderly people with dementia then they’ll do badly in everyone, or at least everyone with a cognitive disability.  When I first got my tube they took my DPA aside and expressed concern that I would “play with it” and yank it out the way babies and young children often so.  That’s how he saw me.  Much of the ableism I faced getting my tube was cognitive ableism because of being developmentally disabled and in the DD service system.  The time I went into the hospital to get my tube, they tried to demand I have 24/7 care from the DD agency or they wouldn’t take me as a patient.  We fought that and won but it was one of many obstacles thrown in my way from day one when I was sick and exhausted from aspiration pneumonia and should have been resting up and convalescing, not being harassed on a three-times-daily basis about whether accepting death would be better than getting a tube.  (They knew they couldn’t ethically or legally deny me the tube, so they worked on getting me to choose not to have it.)

Anyway, I’m telling you what I know.  I fear that it may not be nearly enough for you to make these choices based on.  What I would recommend is:

  • Talk to G-PACT
  • Talk to any other gastroparesis organization willing to listen to you and have advice
  • Seek out places for people with feeding tubes.  Especially places for adults (they’ll have advice much more suited to your developmental stage in life), but even parents of young children can give good advice in a pinch, as long as they aren’t prejudiced about your eating disorder.  (But then some very young children get tubes because of eating disorders where they “refuse to eat” or “can’t seem to get used to food”, so that’s not unheard of even in young children.)
  • Do your research on the types of tubes, and which ones are indicated for which issues.  This can be daunting.  Sometimes it helps to find someone who has access to things like journal articles and can get them to you.  Or a university library, if you are near one.  You will learn all kinds of new vocabulary, but you may surprise yourself when you understand.
  • Do your research on all the other options for gastroparesis, and figure out whether your doctor has even tried them all yet.  

Many doctors know next to nothing about gastroparesis.  many doctors will do what I said before – “Two Zofran a day doesn’t work?  Then I can’t help you.”  I am on, count them:

  • Zofran
  • Reglan (soon to possibly be domperidone, because I have bad side effects on a full dose of Reglan, have to take a partial dose – but this depends on whether we can get acces to an overseas pharmacy).
  • Marinol (which is much less exciting than it sounds… yes it’s derived from marijuana, no it doesn’t get me high, the most marijuana-like side effect some people get is paranoia and high anxiety, not a side-effect you want)
  • Phenergan suppositories (I call them “butt pills” because I always forget the word suppository, so if you ever hear me say “butt pill” I’m talking about Phenergan/Phenadoz)
  • Benadryl
  • Lorazepam

(Yes, those last two have an effect on nausea, not just allergies and anxiety.)  That’s what it took to get me out of the hospital.  They had me on five of those and were thinking I’d need a feeding tube, and when they added Marinol it was a minor miracle and I was allowed to go home on a liquid diet for a few months… until even that fell apart and I needed the feeding tube badly.

I know some doctors are reluctant to prescribe so many sedating meds at once.  They have good reason to be scared.  Every doctor has a different tolerance level for aggressive intervention.  Mine actually errs conservative… I’m this weird problem patient who messes up his ideas about how medicine should be conducted, because doing things “wrong” has saved my life so many times.  But being conservative about treatment can be just as good, and just as potentially lethal, as trying every treatment that comes along.  A doctor who chooses one or the other for ethical reasons is neither a bad person nor a bad doctor, even if they can be maddening at times.

But at any rate, that combination of meds, and the GJ tube, have saved my life.  And I look online and see people being given one nausea med at a time, never in combination, never even in smart combination (like, say Phenergan + Compazine can be bad because the two amplify each other’s side-effects, both being mild neuroleptics, so you want to combine things differently than that usually).  But without combinations, most people with gastroparesis simply have nausea too severe to tolerate just one med.  And many doctors won’t go there, leaving people with severe nausea and eating problems that would not necessarily even be there if they just changed their meds a bit.  Like people who may have problems much too mild to need a feeding tube, but who could get severe enough to need a feeding tube without being on the right meds or other therapies.

So look into everything.  Do all the research you can.  If you have trouble having the spoons to do the research, ask someone who does have the spoons, if they can help you.  Sometimes hospitals have a specific health resource library where you can go in and ask them to print out specific articles on your conditions, free of charge.  Sometimes university libraries will have people who can help you through the basics of looking up and photocopying or printing journal articles.  Same with medical libraries at universities.  (My hospital is a university-affiliated teaching hospital so it’s got a ton of resources at its disposal.  There are serious downsides to university teaching hospitals, but this is one of the upsides.)

And then go into your doctor’s visits with at least one highly trusted other person if you can find one.  They don’t have to say anything, in fact it may be good to work out signals for when they should talk and when they shouldn’t talk.  They certainly shouldn’t be put into the role of answering everything on your behalf, unless that’s something you’ve discussed beforehand and are comfortable with.  (Some doctors will automatically address the second person more than the patient.)  But just their presence there can make a doctor take notice that they are being observed, and this can sway their behavior towards you towards the more civil and respectful.

If a doctor truly treats you like dirt, it is within your rights to walk out and file a complaint.  Just be aware that Patient Relations isn’t likely to be aware of things that are on the microaggression level, so try to save this for blatant discrimination that could seriously affect your care or even possibly threaten your life.  The more documentation you have of what happened, the more witnesses, the better.  Which is again why to bring a witness.  Sometimes the witness can even help in the weird cases where everything goes smoothly while the doctor knows she’s being watched, but the moment you guys turn your backs, she writes something horrible in your chart.

Unfortunately a lot of doctors will use a history of psychiatric disability (including eating disorders) against you, even if it’s totally relevant to how you got your gastroparesis.  A lot of people get gastroparesis from eating disorders.  But a lot of doctors are outright nasty to people with eating disorders, or with any other disorder they see as undoing the work of a doctor.  (The work of a doctor is to heal, so anything that looks like self-harm to a doctor will offend some of them, they take it too personally when it’s not about them at all.  In many ways I was lucky to have a shrink who had severe ADHD and a history of severe depression among other things, because he understood it from the other side.  Not all will, but it helped, a little, maybe not enough.)

Anyway, I’m rambling at this point.  If anyone has any good resources – or information – or advice – anything they know is good – can they please reblog this with that further information attached?  I feel inadequate to covering this question, and many of the other questions I get in my askbox sometimes.  And yet I also feel obligated to try to get what little knowledge I have out there, in case it may help someone, even if their situation is very different from mine.

But really the most advice I can give you is to get to understand your body really well.  Both your body personally, and the way bodies with gastroparesis function in general (possibly specifically post-bulimia gastroparesis, if that makes a difference).  And to use that to ask pointed, intelligent questions of your doctor, and to understand your doctor’s replies to you.  

Also, be aware that there’s a lot of quackery out there aimed at people with incurable diseases.  It’s good to learn to spot it and avoid it.  Especially since a doctor will become twenty times more condescending if he thinks you’re listening to quacks.  (Or will raise your treatment amount to an exorbitant sum if she is a quack and thinks she’s going to get good money out of you.)  If it seems too good to be true, it probably is.  There are only a handful of treatments for gastroparesis out there.  This is why we were granted a humanitarian exemption and allowed to use the gastric neuro-stimulators before they had been fully researched.  There are literally pretty much no treatments to make our stomachs stop being paralyzed, and we are not a treatment priority.  

If someone tells you that simply changing your diet will cure you, they’re talking too good to be true.  Yes, there are good foods and bad foods with gastroparesis (generally fat and fiber are bad), but it’s common sense stuff, it’s not cutting out half the foods in your life due to barely-detectable “allergies” or “energy signatures” or something like that.  Most fad diets that are said to cure every disease known to mankind, are bullshit, or are bullshit for all but a handful of diseases (where the people with the diseases are just as pissed off their real diets have become fad diets, because it means nobody takes them seriously about dietary needs that do serious damage to their bodies if not obeyed).  And there’s all kinds of other quack stuff too.  Watch out for it.  Read up on how to spot quackery.  That’s an important skill as well.  And watch out for anything that can lead to orthorexia (an eating disorder where you get obsessed with food as a measure of dietary or moral purity, and cut out more and more foods in search of that ‘healthy’ feeling you get when you starve… which is actually a feeling your body gives you to rev up to try and go find more food, not something to be pursued literally into oblivion), you don’t need a second eating disorder on your hands.

So many important skills, so little brain to write about them with.  Maybe someone else would have better ideas, or additional ideas.  Please, please, if you do know anything, reblog this with more information.  I want to give you as much information as exists out there, and I don’t have it.  :-(

Notes:
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