<?xml version="1.0" encoding="UTF-8" standalone="yes"?><oembed><version><![CDATA[1.0]]></version><provider_name><![CDATA[Ballastexistenz]]></provider_name><provider_url><![CDATA[https://ballastexistenz.wordpress.com]]></provider_url><author_name><![CDATA[Mel Baggs]]></author_name><author_url><![CDATA[https://ballastexistenz.wordpress.com/author/ameliabaggs/]]></author_url><title><![CDATA[Gastroparesis Awareness Month: A Day In The&nbsp;Life]]></title><type><![CDATA[link]]></type><html><![CDATA[<p class="p1">This is my second post for Gastroparesis Awareness Month.  <a href="https://ballastexistenz.wordpress.com/2014/08/20/tube-love/">Read my first post, Tube Love, here.</a>  My first post was a love poem to my feeding tube.  🙂  My second one is a little more serious and a lot longer.  I apologize for the length.  I have trouble reading lengthy posts myself.  But sometimes I&#8217;m incapable of summarizing myself, so I have to write posts that are too long for even me to read.  I hope you&#8217;ll at least be able to skim through the important parts.  I&#8217;ve tried to break up the text with lots of photos, to see if that helps any.</p>
<p class="p1"><b>A DAY IN THE LIFE</b></p>
<p class="p1">My day starts when my morning caregiver arrives.<span class="Apple-converted-space">  </span>I don’t just have gastroparesis.<span class="Apple-converted-space">  </span>I have a variety of physical, cognitive, and developmental disabilities that make it so that I need help to do a lot of things to get through my day.  So there are several times throughout the day when there is a caregiver here, the rest of the time there is one on call at short notice, and my day officially starts when the morning caregiver comes in the door.</p>
<div data-shortcode="caption" id="attachment_1651" style="width: 1034px" class="wp-caption alignnone"><a href="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-6-27-pm.jpg"><img aria-describedby="caption-attachment-1651" data-attachment-id="1651" data-permalink="https://ballastexistenz.wordpress.com/2014/08/23/gastroparesis-awareness-month-a-day-in-the-life/photo-on-8-22-14-at-6-27-pm/" data-orig-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-6-27-pm.jpg" data-orig-size="1080,720" data-comments-opened="1" data-image-meta="{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}" data-image-title="Photo on 8-22-14 at 6.27 PM" data-image-description="" data-medium-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-6-27-pm.jpg?w=300" data-large-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-6-27-pm.jpg?w=1024" class="wp-image-1651 size-large" src="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-6-27-pm.jpg?w=1024&#038;h=682" alt="My GJ feeding tube" srcset="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-6-27-pm.jpg?w=1024&amp;h=682 1024w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-6-27-pm.jpg?w=150&amp;h=100 150w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-6-27-pm.jpg?w=300&amp;h=200 300w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-6-27-pm.jpg?w=768&amp;h=512 768w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-6-27-pm.jpg 1080w" sizes="(max-width: 1024px) 100vw, 1024px"   /></a><p id="caption-attachment-1651" class="wp-caption-text">My GJ feeding tube</p></div>
<p class="p1">The very first thing we do is start cleaning out my feeding tube.<span class="Apple-converted-space">  </span>Nobody taught us to do this.<span class="Apple-converted-space">  </span>This is something I learned how to do, in order to avoid having to keep getting it replaced due to clogs.<span class="Apple-converted-space">  </span>I push water directly into the j-tube, then I pull it out again, over and over.<span class="Apple-converted-space">  </span>Slowly, with the water come what we call “tube worms” — long wormy-looking pieces of food that have gotten stuck inside of the tube and would have caused a clog had we not got them out.<span class="Apple-converted-space">  </span>We know the tube is running smoothly when we can push water through it without a certain amount of resistance pushing back at us.<span class="Apple-converted-space">  </span>When we near that point, we stop and start concentrating on meds.</p>
<p class="p1">The first medication, and one of the most important ones that I take, is called Phenergan.<span class="Apple-converted-space">  </span>I call it my butt pill — the medical term is suppository, but I always forget that word, so butt pill it is.<span class="Apple-converted-space">  </span>They hand me the pill and a glove, and I turn around and stick it up my butt and wait for it to dissolve.</p>
<div data-shortcode="caption" id="attachment_1656" style="width: 510px" class="wp-caption alignnone"><a href="https://ballastexistenz.files.wordpress.com/2014/08/butt-pill.jpg"><img aria-describedby="caption-attachment-1656" data-attachment-id="1656" data-permalink="https://ballastexistenz.wordpress.com/2014/08/23/gastroparesis-awareness-month-a-day-in-the-life/butt-pill/" data-orig-file="https://ballastexistenz.files.wordpress.com/2014/08/butt-pill.jpg" data-orig-size="500,333" data-comments-opened="1" data-image-meta="{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}" data-image-title="butt pill" data-image-description="" data-medium-file="https://ballastexistenz.files.wordpress.com/2014/08/butt-pill.jpg?w=300" data-large-file="https://ballastexistenz.files.wordpress.com/2014/08/butt-pill.jpg?w=500" class="wp-image-1656 size-full" src="https://ballastexistenz.files.wordpress.com/2014/08/butt-pill.jpg?w=500&#038;h=333" alt="butt pill" width="500" height="333" srcset="https://ballastexistenz.files.wordpress.com/2014/08/butt-pill.jpg 500w, https://ballastexistenz.files.wordpress.com/2014/08/butt-pill.jpg?w=150&amp;h=100 150w, https://ballastexistenz.files.wordpress.com/2014/08/butt-pill.jpg?w=300&amp;h=200 300w" sizes="(max-width: 500px) 100vw, 500px" /></a><p id="caption-attachment-1656" class="wp-caption-text">Me holding a &#8220;butt pill&#8221; &#8212; a Phenergan suppository &#8212; in a gloved hand.</p></div>
<p class="p1">Phenergan is one of six nausea medications I take to get through the day.<span class="Apple-converted-space">  </span>Different people’s gastroparesis symptoms are different.<span class="Apple-converted-space">  </span>Some people’s main symptom is pain and bloating.<span class="Apple-converted-space">  </span>Mine is nausea, really bad nausea.<span class="Apple-converted-space">  </span>So I am on no less than six nausea meds. <span class="Apple-converted-space">  </span>The most important ones are Phenergan, Reglan, and Marinol.<span class="Apple-converted-space">  </span>I also take Zofran, Benadryl, and Lorazepam for nausea.</p>
<p class="p1">Reglan works by making my digestive system move faster.<span class="Apple-converted-space">  </span>The core trait of gastroparesis is that your stomach is partially paralyzed and moves too slow, failing to empty food into your intestines fast enough.<span class="Apple-converted-space">  </span>Reglan is one of the few treatments that targets that slowness directly.<span class="Apple-converted-space">  </span>Unfortunately I have intolerable side-effects at a full dose of Reglan, so I have to take a half-dose.<span class="Apple-converted-space">  </span>I am hoping one day to be able to switch to domperidone, which I would have to order from outside the country.<span class="Apple-converted-space">  </span>Domperidone is like Reglan, but it does not cross the blood-brain barrier so it has fewer side-effects.<span class="Apple-converted-space">  </span>Not being FDA-approved, however, is a major obstacle to people with gastroparesis in the USA.<span class="Apple-converted-space">  </span>It is approved in most other countries, though, so it’s possible to order it, according to my doctors anyway.</p>
<p class="p1">Marinol is derived from marijuana.<span class="Apple-converted-space">  </span>I was highly skeptical of it at first because of that.<span class="Apple-converted-space">  </span>But at the time they suggested it, I was on all five of my other nausea meds and still not able to come home from the hospital.<span class="Apple-converted-space">  </span>Marinol often works where all other nausea meds have failed.<span class="Apple-converted-space">  </span>It does not generally get you high, although it can have other unpleasant side-effects like anxiety and paranoia.<span class="Apple-converted-space">  </span>I luckily have had few side-effects, no high, just a huge reduction in nausea.</p>
<p class="p1">Zofran is a nausea medication often given to people on chemotherapy.<span class="Apple-converted-space">  </span>I don’t understand what the big deal is supposed to be, though.<span class="Apple-converted-space">  </span>Unless I combine it with Benadryl or Lorazepam, it really doesn’t do a lot for me on its own.<span class="Apple-converted-space">  </span>And I’ve heard the same from a lot of other people with gastroparesis.<span class="Apple-converted-space">  </span>Zofran is a pill that dissolves under my tongue, so I don’t have to swallow it or put it through the tube.<span class="Apple-converted-space">  </span>That’s the one benefit is it’s fast-acting and easy to ingest.</p>
<p class="p1">Benadryl and Lorazepam are more well known as an allergy medication and an anxiety medication.<span class="Apple-converted-space">  </span>However, Benadryl is closely related to Dramamine, a well-known nausea med, and has anti-nausea effects itself.<span class="Apple-converted-space">  </span>Lorazepam, likewise, has anti-nausea effects.<span class="Apple-converted-space">  </span>These are medications I take for multiple reasons, both the nausea side and the allergy and anxiety side.<span class="Apple-converted-space">  </span>I take a fixed dose, but I also can take them PRN, meaning whenever I have extra nausea and need more medication than I would normally take.<span class="Apple-converted-space">  </span>Which happens most days.</p>
<p class="p1">My caregiver removes the drainage bag from my g-tube.<span class="Apple-converted-space">  </span>Overnight, I always wear a drainage bag that drains the contents of my stomach into a bag.<span class="Apple-converted-space">  </span>Before I did this, I my bile used to build up in my stomach because it wasn’t getting passed along down to my intestines.<span class="Apple-converted-space">  </span>Then it would creep up my esophagus, into my throat, and I’d wake up choking on it.<span class="Apple-converted-space">  </span>I’d cough it out for over an hour sometimes, sometimes having to call an ambulance if I had enough trouble breathing.<span class="Apple-converted-space">  </span>I have bronchiectasis, a form of COPD that basically ensures any time I aspirate enough stomach fluid, I’m going to get aspiration pneumonia or at least some other lung infection.<span class="Apple-converted-space">  </span>So this was a big deal, and it was happening several nights a week.<span class="Apple-converted-space">  </span>With the drainage bags, and other drainage practices, I only get aspiration pneumonia a few times a year.<span class="Apple-converted-space">  </span>Which is still too much, but it’s a drastic cutback and gives my odds of surviving into old age a much-needed edge.</p>
<p class="p1">After we’ve removed my tube feeding pump and cleaned out my tube, we mix up my medications.<span class="Apple-converted-space">  </span>Most of my medications are in liquid form, the best form for a j-tube because j-tubes are easily clogged.<span class="Apple-converted-space">  </span>We use a syringe to put the medications in.<span class="Apple-converted-space">  </span>The j-tube has two syringe ports, one for a small syringe and one for a larger one. You hold closed whichever one you’re not using, or you can get sprayed in the face.</p>
<div data-shortcode="caption" id="attachment_1653" style="width: 1034px" class="wp-caption alignnone"><a href="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-3-55-pm.jpg"><img aria-describedby="caption-attachment-1653" data-attachment-id="1653" data-permalink="https://ballastexistenz.wordpress.com/2014/08/23/gastroparesis-awareness-month-a-day-in-the-life/photo-on-8-22-14-at-3-55-pm/" data-orig-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-3-55-pm.jpg" data-orig-size="1080,720" data-comments-opened="1" data-image-meta="{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}" data-image-title="Photo on 8-22-14 at 3.55 PM" data-image-description="" data-medium-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-3-55-pm.jpg?w=300" data-large-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-3-55-pm.jpg?w=1024" class="wp-image-1653 size-large" src="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-3-55-pm.jpg?w=1024&#038;h=682" alt="Inserting medication into my j-tube" srcset="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-3-55-pm.jpg?w=1024&amp;h=682 1024w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-3-55-pm.jpg?w=150&amp;h=100 150w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-3-55-pm.jpg?w=300&amp;h=200 300w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-3-55-pm.jpg?w=768&amp;h=512 768w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-22-14-at-3-55-pm.jpg 1080w" sizes="(max-width: 1024px) 100vw, 1024px"   /></a><p id="caption-attachment-1653" class="wp-caption-text">Inserting medication into the small port on my j-tube.</p></div>
<p class="p1">After meds, put Diet Coke into both of the tubes and let it soak for ten minutes or so.<span class="Apple-converted-space">  </span>This helps dissolve any clogs.<span class="Apple-converted-space">  </span>Hot water is supposed to be as good as coke, so we flush it with hot water afterwards.</p>
<p class="p1">Then we do something that polite people call ‘venting’, but the nurse that taught me calls it ‘burping’ and the idea fits.<span class="Apple-converted-space">  </span>You open up the g-tube over a cup.<span class="Apple-converted-space">  </span>We have a designated green Burp Cup.<span class="Apple-converted-space">  </span>I recommend yellow or green cups to camouflage the color of the bile a bit.<span class="Apple-converted-space">  </span>What nurses teach you to do, is put the cup under the tube, unclamp the tube, and unscrew the cap.<span class="Apple-converted-space">  </span>What’s supposed to happen then is all your stomach fluids flow out of the tube and into the cup.<span class="Apple-converted-space">  </span>But it’s not that simple.</p>
<div data-shortcode="caption" id="attachment_1658" style="width: 510px" class="wp-caption alignnone"><img aria-describedby="caption-attachment-1658" data-attachment-id="1658" data-permalink="https://ballastexistenz.wordpress.com/2014/08/23/gastroparesis-awareness-month-a-day-in-the-life/burp-cup/" data-orig-file="https://ballastexistenz.files.wordpress.com/2014/08/burp-cup.jpg" data-orig-size="500,375" data-comments-opened="1" data-image-meta="{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;1&quot;}" data-image-title="burp cup" data-image-description="" data-medium-file="https://ballastexistenz.files.wordpress.com/2014/08/burp-cup.jpg?w=300" data-large-file="https://ballastexistenz.files.wordpress.com/2014/08/burp-cup.jpg?w=500" class="wp-image-1658 size-full" src="https://ballastexistenz.files.wordpress.com/2014/08/burp-cup.jpg?w=500&#038;h=375" alt="burp cup" width="500" height="375" srcset="https://ballastexistenz.files.wordpress.com/2014/08/burp-cup.jpg 500w, https://ballastexistenz.files.wordpress.com/2014/08/burp-cup.jpg?w=150&amp;h=113 150w, https://ballastexistenz.files.wordpress.com/2014/08/burp-cup.jpg?w=300&amp;h=225 300w" sizes="(max-width: 500px) 100vw, 500px" /><p id="caption-attachment-1658" class="wp-caption-text">My burp cup with some liquid in it, and a syringe in front of it.</p></div>
<p class="p1">Here are some of the things I have to do in order to properly burp enough air and fluid for it to actually empty properly and prevent aspiration.<span class="Apple-converted-space">  </span>Some of these things could damage the wrong kind of tube.<span class="Apple-converted-space">  </span>So don’t just do something because I wrote about it here.<span class="Apple-converted-space">  </span>But here are the kind of things I do during a burp:</p>
<ul class="ul1">
<li class="li3">I move the tube in and out.<span class="Apple-converted-space">  </span>Pulling it out as far as possible, holding it to see if more fluid or air comes out, then pushing it back in.<span class="Apple-converted-space">  </span>Sometimes I move it almost in a pumping motion, sometimes much slower.<span class="Apple-converted-space">  </span>I have to be careful, as I do this, not to pull so hard or so far as to actually dislodge the tube.<span class="Apple-converted-space">  </span>Every tube is different, and some dislodge more than others.<span class="Apple-converted-space">  </span>You have to know your tube well to do this.</li>
<li class="li3">I press on my stomach in different areas, which helps move the bile and air around.</li>
<li class="li3">I swallow a lot of air, which forces the bile out of the tube through air pressure.</li>
<li class="li3">I use my stomach muscles to push.<span class="Apple-converted-space">  </span>Almost like you push when you’re on the toilet, except it’s your stomach, not your bowels.</li>
<li class="li3">If there is any solid matter that seems to be getting in the way, such as blood clots (I have an intermittent bleed in my stomach), I stick a bent paperclip inside the g-tube.<span class="Apple-converted-space">  </span>I keep one end bent so that it will never get stuck inside the tube.<span class="Apple-converted-space">  </span>And I use it to either hold solid matter out of the way so the liquid can get out, or to crush up or move the solid matter around to help it come out.</li>
<li class="li3">I use a syringe to either push water into the tube, or pull bile out of the tube.<span class="Apple-converted-space">  </span>This can help when things are stuck.<span class="Apple-converted-space">  </span>It can also help to dilute things when the stuff in your stomach is too thick.</li>
<li class="li3">Speaking of diluting things, sometimes I drink a bit of water or ginger ale and then jump up and down to mix it up with my stomach fluids.</li>
<li class="li3">I chew gum.<span class="Apple-converted-space">  </span>This seems to stimulate both bile production and gas production, and sometimes this helps move things through or get things thinned out.</li>
</ul>
<p class="p3">Understand that some of these are things that no doctor would ever recommend you do to your tube.<span class="Apple-converted-space">  </span>And since each tube is different, what I’m doing above might destroy another type of tube.<span class="Apple-converted-space">  </span>So my advice if you have a tube, is get to know your tube really well before you do anything unusual to it, and get to know your body, too.<span class="Apple-converted-space">  </span>Some of the things I do could also make a person really sick in the wrong circumstances.<span class="Apple-converted-space">  </span>In fact it sometimes makes me sick, if for instance I swallow a lot of air but I can’t get it to come out the tube.</p>
<p class="p3">Then we dump the contents of the Burp Cup in the toilet (which is every bit as gross-looking as it sounds), rinse it out a few times and keep dumping that in the toilet, and then fill it up with soapy water and set it on the back of the toilet to soak.<span class="Apple-converted-space">  </span>Without the soapy water, it starts to really reek after awhile.</p>
<p class="p3">Soon enough it’s time for more medications.<span class="Apple-converted-space">  </span>Those work the same way the original ones worked:<span class="Apple-converted-space">  </span>They go in through the j-tube.<span class="Apple-converted-space">  </span>And this is also where my tube feeding starts.</p>
<p class="p3">I’m fed a formula called Osmolite.<span class="Apple-converted-space">  </span>It’s basically a pre-mixed formula, it’s the same every day.<span class="Apple-converted-space">  </span>It’s beige and it smells and tastes gross, but luckily I don’t have to smell and taste it.<span class="Apple-converted-space">  </span>It looks exactly like what we used to feed the baby birds at the wildlife rehab center I used to work at.<span class="Apple-converted-space">  </span>Anyway, a j-tube is different from a g-tube in some important ways when it comes to feeding.</p>
<div data-shortcode="caption" id="attachment_1648" style="width: 1034px" class="wp-caption alignnone"><a href="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-37-pm.jpg"><img aria-describedby="caption-attachment-1648" data-attachment-id="1648" data-permalink="https://ballastexistenz.wordpress.com/2014/08/23/gastroparesis-awareness-month-a-day-in-the-life/photo-on-8-23-14-at-3-37-pm/" data-orig-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-37-pm.jpg" data-orig-size="1080,720" data-comments-opened="1" data-image-meta="{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}" data-image-title="Photo on 8-23-14 at 3.37 PM" data-image-description="" data-medium-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-37-pm.jpg?w=300" data-large-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-37-pm.jpg?w=1024" class="wp-image-1648 size-large" src="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-37-pm.jpg?w=1024&#038;h=682" alt="Osmolite" srcset="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-37-pm.jpg?w=1024&amp;h=682 1024w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-37-pm.jpg?w=150&amp;h=100 150w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-37-pm.jpg?w=300&amp;h=200 300w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-37-pm.jpg?w=768&amp;h=512 768w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-37-pm.jpg 1080w" sizes="(max-width: 1024px) 100vw, 1024px"   /></a><p id="caption-attachment-1648" class="wp-caption-text">A bottle of Osmolite hanging inside of its backpack.</p></div>
<p class="p3">A g-tube goes to your stomach.<span class="Apple-converted-space">  </span>Your stomach is designed to take in large quantities of food at once.<span class="Apple-converted-space">  </span>That means that your stomach is capable of stretching to accommodate your food.<span class="Apple-converted-space">  </span>People who are fed by g-tube can often be fed simply by pushing lots of food in by syringe, all at once.</p>
<p class="p3">But a j-tube goes to your intestines.<span class="Apple-converted-space">  </span>Your intestines are not able to stretch to accommodate the food you need to eat.<span class="Apple-converted-space">  </span>So you need to be fed extremely slowly.<span class="Apple-converted-space">  </span>For me, this means I’m on a feeding pump.<span class="Apple-converted-space">  </span>It gives me 45 milliliters of food per hour.<span class="Apple-converted-space">  </span>Ideally, I would get 90 mL per hour, but that made me really sick, so I use 45.<span class="Apple-converted-space">  </span>This means that it takes 24 hours to feed me the whole container of food.<span class="Apple-converted-space">  </span>So I have a backpack the feeding pump and the Osmolite live in, so if I have to go anywhere, I can just wear it on my back.</p>
<p class="p3">The feeding pump itself is just a little box that attaches to a tube going out from the Osmolite bottle.<span class="Apple-converted-space">  </span>The pump slowly moves the food into my intestines, keeping it at a constant rate day in and day out.<span class="Apple-converted-space">  </span>I sometimes give myself a few hours of break in the morning, but other than that I am constantly eating, and feel neither full nor empty.</p>
<div data-shortcode="caption" id="attachment_1649" style="width: 1034px" class="wp-caption alignnone"><a href="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-36-pm.jpg"><img aria-describedby="caption-attachment-1649" data-attachment-id="1649" data-permalink="https://ballastexistenz.wordpress.com/2014/08/23/gastroparesis-awareness-month-a-day-in-the-life/photo-on-8-23-14-at-3-36-pm/" data-orig-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-36-pm.jpg" data-orig-size="1080,720" data-comments-opened="1" data-image-meta="{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}" data-image-title="Photo on 8-23-14 at 3.36 PM" data-image-description="" data-medium-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-36-pm.jpg?w=300" data-large-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-36-pm.jpg?w=1024" class="wp-image-1649 size-large" src="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-36-pm.jpg?w=1024&#038;h=682" alt="feeding pump" srcset="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-36-pm.jpg?w=1024&amp;h=682 1024w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-36-pm.jpg?w=150&amp;h=100 150w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-36-pm.jpg?w=300&amp;h=200 300w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-36-pm.jpg?w=768&amp;h=512 768w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-36-pm.jpg 1080w" sizes="(max-width: 1024px) 100vw, 1024px"   /></a><p id="caption-attachment-1649" class="wp-caption-text">An Enteralite Infinity feeding pump, inside its backpack.</p></div>
<p class="p3">The only time I’ve felt hunger has been since going on steroids for severe adrenal insufficiency.<span class="Apple-converted-space">  </span>Steroids can cause such intense food cravings that I end up eating small things and having to drain them out of my g-tube to avoid aspirating them.<span class="Apple-converted-space">  </span>I’ve talked to my doctors and they say I’m not to blame for this, because it’s a known side-effect of dexamethasone.<span class="Apple-converted-space">  </span>I just have to be careful.</p>
<p class="p3">The feeding tube has to be set up properly.<span class="Apple-converted-space">  </span>The tube is connected to the Osmolite bottle, wound through the backpack and into the pump, then wound out through another hole in the side of the backpack.<span class="Apple-converted-space">  </span>Then it’s plugged into my j-tube.<span class="Apple-converted-space">  </span>The settings have to be cleared so the pump knows it’s a new bottle, and not the same old one.<span class="Apple-converted-space">  </span>If it thinks it’s the old bottle, it will stop feeding me early.<span class="Apple-converted-space">  </span>Then we have to make sure it’s still set to the right feeding speed.<span class="Apple-converted-space">  </span>Then we “prime” it by pressing a button to move the food through the tube quickly.<span class="Apple-converted-space">  </span>And then we plug the tube into my j-tube and turn it on.</p>
<div data-shortcode="caption" id="attachment_1647" style="width: 1034px" class="wp-caption alignnone"><img aria-describedby="caption-attachment-1647" data-attachment-id="1647" data-permalink="https://ballastexistenz.wordpress.com/2014/08/23/gastroparesis-awareness-month-a-day-in-the-life/photo-on-8-23-14-at-3-39-pm/" data-orig-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-39-pm.jpg" data-orig-size="1080,720" data-comments-opened="1" data-image-meta="{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}" data-image-title="Photo on 8-23-14 at 3.39 PM" data-image-description="" data-medium-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-39-pm.jpg?w=300" data-large-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-39-pm.jpg?w=1024" class="wp-image-1647 size-large" src="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-39-pm.jpg?w=1024&#038;h=682" alt="Putting the Osmolite tube into the large port of my feeding tube." srcset="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-39-pm.jpg?w=1024&amp;h=682 1024w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-39-pm.jpg?w=150&amp;h=100 150w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-39-pm.jpg?w=300&amp;h=200 300w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-39-pm.jpg?w=768&amp;h=512 768w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-39-pm.jpg 1080w" sizes="(max-width: 1024px) 100vw, 1024px"   /><p id="caption-attachment-1647" class="wp-caption-text">Putting the tube from the Osmolite bottle into the large port on my j-tube.</p></div>
<div data-shortcode="caption" id="attachment_1646" style="width: 1034px" class="wp-caption alignnone"><img aria-describedby="caption-attachment-1646" data-attachment-id="1646" data-permalink="https://ballastexistenz.wordpress.com/2014/08/23/gastroparesis-awareness-month-a-day-in-the-life/photo-on-8-23-14-at-3-39-pm-2/" data-orig-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-39-pm-2.jpg" data-orig-size="1080,720" data-comments-opened="1" data-image-meta="{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}" data-image-title="Photo on 8-23-14 at 3.39 PM #2" data-image-description="" data-medium-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-39-pm-2.jpg?w=300" data-large-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-39-pm-2.jpg?w=1024" class="wp-image-1646 size-large" src="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-39-pm-2.jpg?w=1024&#038;h=682" alt="the osmolite tube connected to my feeding tube" srcset="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-39-pm-2.jpg?w=1024&amp;h=682 1024w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-39-pm-2.jpg?w=150&amp;h=100 150w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-39-pm-2.jpg?w=300&amp;h=200 300w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-39-pm-2.jpg?w=768&amp;h=512 768w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-39-pm-2.jpg 1080w" sizes="(max-width: 1024px) 100vw, 1024px"   /><p id="caption-attachment-1646" class="wp-caption-text">The Osmolite tube connected to my feeding tube.</p></div>
<p class="p3">If anything goes wrong with the feeding, there are a bunch of different, loud alarms that will go off.<span class="Apple-converted-space">  </span>There’s two separate alarms for problems with food flow, one for trouble with food flowing into the pump, one for trouble with food flowing out of it.<span class="Apple-converted-space">  </span>There’s another alarm for if it runs out of food, and another alarm for when the feeding is supposed to stop.<span class="Apple-converted-space">  </span>And an alarm for if you plugged it in but forgot to turn the pump on.<span class="Apple-converted-space">  </span>The main thing they have in common is that they are very loud, annoying, and impossible to ignore.</p>
<p class="p3">After my feeding is set up, the next big part of my routine is another butt pill.<span class="Apple-converted-space">  </span>I have an alarm clock set for that.<span class="Apple-converted-space">  </span>The alarm clock is out of my reach, so in order to get to it I have to move out of my bed.<span class="Apple-converted-space">  </span>This is enough of a prompt that usually I can go get the butt pill and insert it into my rectum with no problem.<span class="Apple-converted-space">  </span>My problem is with initiating actions, and the alarm clock placed out of my reach helps me initiate.</p>
<div data-shortcode="caption" id="attachment_1655" style="width: 510px" class="wp-caption alignnone"><a href="https://ballastexistenz.files.wordpress.com/2014/08/butt-pill-2.jpg"><img aria-describedby="caption-attachment-1655" data-attachment-id="1655" data-permalink="https://ballastexistenz.wordpress.com/2014/08/23/gastroparesis-awareness-month-a-day-in-the-life/butt-pill-2/" data-orig-file="https://ballastexistenz.files.wordpress.com/2014/08/butt-pill-2.jpg" data-orig-size="500,333" data-comments-opened="1" data-image-meta="{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}" data-image-title="butt pill 2" data-image-description="" data-medium-file="https://ballastexistenz.files.wordpress.com/2014/08/butt-pill-2.jpg?w=300" data-large-file="https://ballastexistenz.files.wordpress.com/2014/08/butt-pill-2.jpg?w=500" class="wp-image-1655 size-full" src="https://ballastexistenz.files.wordpress.com/2014/08/butt-pill-2.jpg?w=500&#038;h=333" alt="butt pill" width="500" height="333" srcset="https://ballastexistenz.files.wordpress.com/2014/08/butt-pill-2.jpg 500w, https://ballastexistenz.files.wordpress.com/2014/08/butt-pill-2.jpg?w=150&amp;h=100 150w, https://ballastexistenz.files.wordpress.com/2014/08/butt-pill-2.jpg?w=300&amp;h=200 300w" sizes="(max-width: 500px) 100vw, 500px" /></a><p id="caption-attachment-1655" class="wp-caption-text">Standing in the kitchen holding up a butt pill (Phenergan suppository) in its wrapper.</p></div>
<p class="p3">At some point, a different time each day, a licensed nursing assistant (LNA) comes in to help me bathe.<span class="Apple-converted-space">  </span>The first thing she does is clean the mucus, and sometimes blood, off of my stoma site (the area where my feeding tube enters my body).<span class="Apple-converted-space">  </span>And then we decide how much else of me to wash.<span class="Apple-converted-space">  </span>Washing is very painful for me, so I often opt to only wash the most essential parts and put medicated lotions on, and deodorant.<span class="Apple-converted-space">  </span>I need help washing because of a movement disorder, although even as a child I was never good at bathing and I went through a lot of pointless and humiliating training about bathing in mental institutions as a teenager.</p>
<p class="p3">I don’t have daily mealtimes, because I am eating literally all day and all night.<span class="Apple-converted-space">  </span>The closest I have is a series of medication routines, and there are people here who help me perform those.<span class="Apple-converted-space">  </span>They involve mixing up medications and putting them into my j-tube in a certain order.<span class="Apple-converted-space">  </span>That kind of thing is too complicated for me to do on my own.<span class="Apple-converted-space">  </span>I can do maybe one medication, if I’m lucky, but I can’t do the huge number of meds that are required for my daily routine.</p>
<p class="p3">The people who come to help me out basically do nearly everything for me.<span class="Apple-converted-space">  </span>They either help me do the thing entirely, or they help me get started.<span class="Apple-converted-space">  </span>For instance, there are many things that I can’t do on my own, but that I could do if you handed me the materials to do it with.<span class="Apple-converted-space">  </span>Like I would not be able to go into the bathroom and pick up deodorant and put it on, but if you hand me the deodorant I can put it on.<span class="Apple-converted-space">  </span>This is because of problems initiating associated with my movement disorder.<span class="Apple-converted-space">  </span>So I get anything from assistance with starting things, to total assistance, and it all depends on what I need that day.</p>
<p class="p3">I wear a drainage bag on my g-tube during afternoons and evenings.<span class="Apple-converted-space">  </span>It collects everything from inside my stomach.<span class="Apple-converted-space">  </span>It has an accordion that you press down, and as the accordion pulls itself out again, it pulls the liquid and gas out of my stomach.<span class="Apple-converted-space">  </span>As long as I keep pressing the accordion as it comes out, it will keep sucking in bile.<span class="Apple-converted-space">  </span>Then when someone gets here, they can dump all the bile in the toilet and wash out the drainage bag with vinegar and water.<span class="Apple-converted-space">  </span>I have devised a number of ways to keep the drainage bag in good shape so that I can use it over and over again for months at best, even though they are single use only.<span class="Apple-converted-space">  </span>They cost $80 and aren’t covered by insurance, so we have to be creative.</p>
<div data-shortcode="caption" id="attachment_1645" style="width: 1034px" class="wp-caption alignnone"><a href="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-58-pm.jpg"><img aria-describedby="caption-attachment-1645" data-attachment-id="1645" data-permalink="https://ballastexistenz.wordpress.com/2014/08/23/gastroparesis-awareness-month-a-day-in-the-life/photo-on-8-23-14-at-3-58-pm/" data-orig-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-58-pm.jpg" data-orig-size="1080,720" data-comments-opened="1" data-image-meta="{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}" data-image-title="Photo on 8-23-14 at 3.58 PM" data-image-description="" data-medium-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-58-pm.jpg?w=300" data-large-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-58-pm.jpg?w=1024" class="wp-image-1645 size-large" src="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-58-pm.jpg?w=1024&#038;h=682" alt="Drainage bag connected to my g-tube, contents pretty full." srcset="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-58-pm.jpg?w=1024&amp;h=682 1024w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-58-pm.jpg?w=150&amp;h=100 150w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-58-pm.jpg?w=300&amp;h=200 300w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-58-pm.jpg?w=768&amp;h=512 768w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-58-pm.jpg 1080w" sizes="(max-width: 1024px) 100vw, 1024px"   /></a><p id="caption-attachment-1645" class="wp-caption-text">Drainage bag connected to my g-tube, contents pretty full.</p></div>
<p class="p3">The evening routine is much like the morning routine, including burping the g-tube manually, and a lot of medications at different times.<span class="Apple-converted-space">  </span>There’s also a bunch of things, like physical therapy, that don’t have much to do with the gastroparesis or feeding tube at all.<span class="Apple-converted-space">  </span>I’ve needed services to survive for longer than I’ve had gastroparesis, and I’d still need them even if I didn’t have gastroparesis.<span class="Apple-converted-space">  </span>It’s just that right now, a good deal of my daily routine does revolve around gastroparesis.</p>
<p class="p3">Night is the scariest time for me with gastroparesis.<span class="Apple-converted-space">  </span>This is the time when I am most likely to aspirate.<span class="Apple-converted-space">  </span>What happens is usually that something goes wrong with the drainage bag, and it isn’t draining as much as it should.<span class="Apple-converted-space">  </span>This usually means a blood clot or something is stuck in the tube, preventing bile from exiting my stomach.<span class="Apple-converted-space">  </span>So the bile goes up into my esophagus.<span class="Apple-converted-space">  </span>I have central and obstructive sleep apnea and sleep with a bipap machine that blows air into my lungs.<span class="Apple-converted-space">  </span>When the bile goes into my esophagus, the bipap blows it down into my lungs.<span class="Apple-converted-space">  </span>I wake up choking and coughing.</p>
<div data-shortcode="caption" id="attachment_1650" style="width: 1034px" class="wp-caption alignnone"><a href="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-08-am.jpg"><img aria-describedby="caption-attachment-1650" data-attachment-id="1650" data-permalink="https://ballastexistenz.wordpress.com/2014/08/23/gastroparesis-awareness-month-a-day-in-the-life/photo-on-8-23-14-at-3-08-am/" data-orig-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-08-am.jpg" data-orig-size="1080,720" data-comments-opened="1" data-image-meta="{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}" data-image-title="Photo on 8-23-14 at 3.08 AM" data-image-description="" data-medium-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-08-am.jpg?w=300" data-large-file="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-08-am.jpg?w=1024" class="wp-image-1650 size-large" src="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-08-am.jpg?w=1024&#038;h=682" alt="Me wearing my bipap mask at night." srcset="https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-08-am.jpg?w=1024&amp;h=682 1024w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-08-am.jpg?w=150&amp;h=100 150w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-08-am.jpg?w=300&amp;h=200 300w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-08-am.jpg?w=768&amp;h=512 768w, https://ballastexistenz.files.wordpress.com/2014/08/photo-on-8-23-14-at-3-08-am.jpg 1080w" sizes="(max-width: 1024px) 100vw, 1024px"   /></a><p id="caption-attachment-1650" class="wp-caption-text">Me wearing my bipap mask at night.</p></div>
<p class="p3">Then, I usually spend at least an hour coughing up bile.<span class="Apple-converted-space">  </span>If it’s bad enough that I can’t breathe, I have to call 911.<span class="Apple-converted-space">  </span>But often I just sit on the bathroom floor with a wad of tissues and cough up bile and throw them away as fast as humanly possible, trying to get it all out of my lungs.<span class="Apple-converted-space">  </span>I have a condition called bronchiectasis that makes it easy for me to get lung infections and hard for me to clear lung infections.<span class="Apple-converted-space">  </span>So every time I have a bad enough aspiration, I have to go on antibiotics immediately.<span class="Apple-converted-space">  </span>The goal is to prevent aspiration pneumonia, although usually I get aspiration pneumonia anyway and the antibiotics just help me fight it off in the end.<span class="Apple-converted-space">  </span>Right now, as I’m writing this, I have aspiration pneumonia for the second time in the past year.<span class="Apple-converted-space">  </span>But I’m doing better than ever because I’m able to treat it properly now.</p>
<p class="p3">But the good news is that with the feeding tube, I’ve gone from aspirating several nights a week, to aspirating several nights a year.<span class="Apple-converted-space">  </span>Any aspiration is too much aspiration, but with the feeding tube I have the chance to live a lot longer than I was going to live without it.</p>
<p class="p3">The very <i>last</i> thing that happens in my day is a very early-morning phone call and alarm clock.<span class="Apple-converted-space">  </span>It’s the Phenergan suppository again.<span class="Apple-converted-space">  </span>That Phenergan suppository is the bedrock of my anti-nausea regime, and it’s vital that I get every single dose.<span class="Apple-converted-space">  </span>The Phenergan, Reglan, and Marinol are the most important nausea meds and I never skip a dose, ever.<span class="Apple-converted-space">  </span>It gets to the point that I look forward to sticking that Phenergan pill up my butt because I know how much better I’ll feel afterwards.<span class="Apple-converted-space">  </span>And as someone who doesn’t like anything put up any orifice where it doesn’t belong, that says a lot.</p>
<p class="p3"><b>ABOUT GASTROPARESIS</b></p>
<p class="p3">Gastroparesis is a really weird disease in some ways.<span class="Apple-converted-space">  </span>One of the weirdest parts of it, is that the severity of your symptoms has no correlation to the severity of your delayed stomach emptying.<span class="Apple-converted-space">  </span>So someone can have a severe stomach emptying delay but barely any symptoms.<span class="Apple-converted-space">  </span>Someone else can have a mild stomach emptying delay but very severe symptoms.<span class="Apple-converted-space">  </span>I’m someone who has (as far as we could determine) a mild to moderate stomach emptying delay, but severe enough symptoms that I require a feeding tube both for the nutrition and to avoid aspiration.</p>
<p class="p3">Also, different people have different symptoms.<span class="Apple-converted-space">  </span>Here is a description of gastroparesis taken from one of the common gastroparesis awareness ribbons:</p>
<p class="p3"><i>Paralysis of the stomach that is estimated to affect 5 million Americans with no cure and few treatments.<span class="Apple-converted-space">  </span>Foods eaten take hours or even days to leave the stomach leading to nausea, pain, vomiting, malnutrition, bloating, weight issues, and more.<span class="Apple-converted-space">  </span>It does not mean that you are not hungry… it means that you are starving but cannot eat the food right in front of you.</i></p>
<p class="p3"><i> </i>Another awareness ribbon reads:</p>
<p class="p3"><i>Gastroparesis is a rare, debilitating disease that literally means paralysis of the stomach.<span class="Apple-converted-space">  </span>When someone with Gastroparesis eats, the food stays in their stomach for hours or even days.<span class="Apple-converted-space">  </span>Symptoms of Gastroparesis include = Severe abdominal pain, gastro reflux, vomiting, nausea, feeling full after eating very little, bloating, heartburn, unintentional weight gain, unintentional weight loss, malnutrition and much more.<span class="Apple-converted-space">  </span>There is currently very few treatments and no known cure for Gastroparesis.</i></p>
<p class="p3"><i> </i>But even within those lists of symptoms, different people experience different things.<span class="Apple-converted-space">  </span>Some people lose a lot of weight.<span class="Apple-converted-space">  </span>I lost a total of 70 pounds overall.<span class="Apple-converted-space">  </span>Other people gain a lot of weight, or lose weight and then gain it back again as their body enters starvation mode and tries to hang onto what calories it can.<span class="Apple-converted-space">  </span>Some people’s main symptom is pain and bloating.<span class="Apple-converted-space">  </span>My main symptom is nausea and loss of appetite.<span class="Apple-converted-space">  </span>I had such severe nausea that even before I got the feeding tube, I couldn’t make myself drink enough Ensure to survive, until they put me on six different nausea medications.</p>
<p class="p3"><b>MY VIEW FROM THE SUPPORT GROUPS</b></p>
<p class="p3">Something I see very often in the online support groups, is people getting substandard care for gastroparesis.<span class="Apple-converted-space">  </span>Their doctors don’t understand gastroparesis, so they don’t understand how to treat it.</p>
<p class="p3">One of the biggest mistakes doctors make is to assume that the person’s symptoms will only be as bad as the delay in stomach emptying.<span class="Apple-converted-space">  </span>As I mentioned earlier, severity of symptoms is, for reasons not entirely understood, not well-correlated with the delay in stomach emptying.<span class="Apple-converted-space">  </span>It may be that there are other things, like problems with the vagus nerve, that cause the more severe symptoms some people report even when their stomach is emptying relatively fast for a person with gastroparesis.</p>
<p class="p3">But at any rate, I see way too many people struggling to keep enough food down to maintain a healthy weight, but being told by doctors that everything is okay because their emptying delay is not very severe.</p>
<p class="p3">I also see a lot of people whose doctors give up on nausea medication before they even start.<span class="Apple-converted-space">  </span>Just to give you a clue, this is what my nausea medication looks like.</p>
<p class="p3">Every day, I take six different nausea medications.<span class="Apple-converted-space">  </span>I take Reglan (which is not just a nausea medication, but also speeds up your stomach), I take Zofran, I take Phenergan suppositories, I take Marinol, I take Benadryl, and I take Ativan.<span class="Apple-converted-space">  </span>You may not know that Benadryl and Ativan treat nausea, but they do.<span class="Apple-converted-space">  </span>And it is the combination of those medications that got me out of a five-week-long hospital stay a couple years ago.<span class="Apple-converted-space">  </span>Marinol was the final addition.<span class="Apple-converted-space">  </span>I had been afraid to take it because it’s derived from marijuana, but it doesn’t get me high and I have no real side-effects from it.<span class="Apple-converted-space">  </span>Marinol often helps people with nausea who can’t be helped by any other medication, and I fell into that category.<span class="Apple-converted-space">  </span>I was already on five medications, which were helping somewhat, but only the addition of Marinol allowed me to leave the hospital without a feeding tube, and stay home without a feeding tube for several months.</p>
<div data-shortcode="caption" id="attachment_1657" style="width: 510px" class="wp-caption alignnone"><a href="https://ballastexistenz.files.wordpress.com/2014/08/nausea-meds.jpg"><img aria-describedby="caption-attachment-1657" data-attachment-id="1657" data-permalink="https://ballastexistenz.wordpress.com/2014/08/23/gastroparesis-awareness-month-a-day-in-the-life/nausea-meds/" data-orig-file="https://ballastexistenz.files.wordpress.com/2014/08/nausea-meds.jpg" data-orig-size="500,667" data-comments-opened="1" data-image-meta="{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}" data-image-title="nausea meds" data-image-description="" data-medium-file="https://ballastexistenz.files.wordpress.com/2014/08/nausea-meds.jpg?w=225" data-large-file="https://ballastexistenz.files.wordpress.com/2014/08/nausea-meds.jpg?w=500" class="wp-image-1657 size-full" src="https://ballastexistenz.files.wordpress.com/2014/08/nausea-meds.jpg?w=500&#038;h=667" alt="Six different nausea medications of various types" width="500" height="667" srcset="https://ballastexistenz.files.wordpress.com/2014/08/nausea-meds.jpg 500w, https://ballastexistenz.files.wordpress.com/2014/08/nausea-meds.jpg?w=112&amp;h=150 112w, https://ballastexistenz.files.wordpress.com/2014/08/nausea-meds.jpg?w=225&amp;h=300 225w" sizes="(max-width: 500px) 100vw, 500px" /></a><p id="caption-attachment-1657" class="wp-caption-text">All of my nausea meds: Dronabinol (Marinol), Q-Dryl (Benadryl), Metoclopramide (Reglan), Lorazepam (Ativan), Phenadoz (Phenergan), and Ondansetron (Zofran).</p></div>
<p class="p3">What I see happening to other people, though?<span class="Apple-converted-space">  </span>Their doctor offers them a little Zofran or Reglan, maybe both if they’re lucky.<span class="Apple-converted-space">  </span>Then, if they don’t improve sufficiently, they’re told they are out of luck, and there’s nothing more the doctor can do.<span class="Apple-converted-space">  </span>I understand the risks of prescribing six different medications that are all sedating in their own ways.<span class="Apple-converted-space">  </span>But it’s also a huge risk to allow your patient to starve to death because they can’t keep food down.<span class="Apple-converted-space">  </span>Many times these are people who won’t need feeding tubes, people who won’t need any drastic interventions, all they need is something to keep the nausea under control.<span class="Apple-converted-space">  </span>And their doctors won’t experiment with combinations of drugs for that.<span class="Apple-converted-space">  </span>They just give up after the first one or two fail.</p>
<p class="p3">I also see a lot of people whose doctors simply don’t know much about gastroparesis and won’t do much to find out about it.<span class="Apple-converted-space">  </span>So they won’t get referred for the best treatments, or they’ll get referred to a specialist who also doesn’t know much about gastroparesis.<span class="Apple-converted-space">  </span>And they’ll get passed around in circles by doctors who don’t know what to do with them, getting sicker and sicker along the way.</p>
<p class="p3">People who have multiple health conditions tend to have the most trouble getting good healthcare, and gastroparesis is often the results of another health condition.<span class="Apple-converted-space">  </span>Diabetes is a common cause of gastroparesis.<span class="Apple-converted-space">  </span>Some eating disorders can result in gastroparesis.<span class="Apple-converted-space">  </span>In my case, we suspect it’s caused by an autonomic neuropathy that runs in my family.<span class="Apple-converted-space">  </span>But we don’t know.<span class="Apple-converted-space">  </span>When I was diagnosed with severe secondary adrenal insufficiency, we had a lot of hope that the gastroparesis symptoms would go away, because adrenal insufficiency can mimic gastroparesis.<span class="Apple-converted-space">  </span>But the symptoms didn’t go away.<span class="Apple-converted-space">  </span>I gained a little weight back on steroids, but that’s all.<span class="Apple-converted-space">  </span>Now we’ve found out through single-fiber EMG testing that my mother and I have a neuromuscular junction disease, probably something like myasthenia gravis.<span class="Apple-converted-space">  </span>We also have some form of hypermobility syndrome, which can sometimes be tied to a connective tissue disorder, which sometimes can be tied to gastroparesis.</p>
<p class="p3">And I’ve noticed among the support groups that most people with gastroparesis are like me:<span class="Apple-converted-space">  </span>They have a complicated medical history with a good deal of diagnoses that are connected in ways that aren’t fully understood.<span class="Apple-converted-space">  </span>There’s people with mitochondrial disease, there’s people with Ehlers Danlos and related syndromes, there’s people with eating disorders, there’s people with adrenal insufficiency, there’s people with diabetes, there’s people with neuromuscular junction diseases, there’s people with autonomic dysfunction, and there’s even people with several of these things at once.<span class="Apple-converted-space">  </span>And the more things we have, the less our doctors seem to understand what’s going on.<span class="Apple-converted-space">  </span>I’m lucky to have a dedicated team of specialists for all of my conditions, who are willing to work together to keep me alive.<span class="Apple-converted-space">  </span>Without them I wouldn’t be here right now.</p>
<p class="p3">There have always been some doctors who felt like my life wasn’t worth saving, or that things weren’t as bad as they actually were.<span class="Apple-converted-space">  </span>The doctors I’ve kept are the ones who have done the lung x-rays and CAT scans to prove I had pneumonia and bronchiectasis, the ones who did the gastric emptying studies to prove I had gastroparesis, the ones who did the blood tests to prove I had adrenal insufficiency, the ones who did the EMG to prove I had a myasthenia-like syndrome.<span class="Apple-converted-space">  </span>Basically, the ones who have gone out and gotten the proof to fight anyone who says either “This kind of patient isn’t worth keeping alive,” or “She’s exaggerating her symptoms, it can’t be that bad,” or “She’ll never be able to take care of a feeding tube anyway.”</p>
<p class="p3"><b>WHY AWARENESS?</b></p>
<p class="p3">I’m not usually a big fan of awareness days, awareness months, and that kind of thing.<span class="Apple-converted-space">  </span>But there are things I make an exception for, and gastroparesis is one of them.</p>
<p class="p3">I went for years with gastroparesis symptoms before I was properly diagnosed and treated.<span class="Apple-converted-space">  </span>In fact, the first time I was hospitalized for gastroparesis, was something like five years before I was diagnosed.<span class="Apple-converted-space">  </span>They put me on medications for “chronic nausea” and didn’t do any further looking for the source of the nausea.</p>
<p class="p3">If I had been diagnosed and treated earlier, there’s a chance that it would never have gotten as bad as it is now.<span class="Apple-converted-space">  </span>There’s a chance that I wouldn’t need a feeding tube, that I wouldn’t have gotten aspiration pneumonia eight times in one year, that I wouldn’t have entered adrenal crisis from the illnesses that followed that.</p>
<p class="p3">Because for someone with a complex medical history, one thing is never just one thing.<span class="Apple-converted-space">  </span>Gastroparesis causes me to have bad reflux.<span class="Apple-converted-space">  </span>The treatments I use for sleep apnea cause me to aspirate that reflux at a higher rate than normal.<span class="Apple-converted-space">  </span>Bronchiectasis causes that aspiration to result in pneumonia pretty much every time.<span class="Apple-converted-space">  </span>Adrenal insufficiency means that getting sick with pneumonia puts me into adrenal crisis without treatment.<span class="Apple-converted-space">  </span>Everything builds on each other until it’s actually pretty surprising that I’m alive at this point.</p>
<p class="p3">Gastroparesis can be pretty bad even if you don’t have a complicated medical history.<span class="Apple-converted-space">  </span>But as I said above, most people I know with gastroparesis <i>do</i> have a complicated medical history.<span class="Apple-converted-space">  </span>Whether it’s eating disorders, diabetes, mitochondrial dysfunction, adrenal insufficiency, Ehlers Danlos, autonomic dysfunction, or some unholy union of many of these things, people with gastroparesis rarely seem to come with just one disease.<span class="Apple-converted-space">  </span>And that makes it even more important that people know what gastroparesis is, and what it looks like, so they can do something about it.</p>
<p class="p3">By the time I was diagnosed, I had been living on grits, crackers, and broth for weeks and had lost forty pounds.<span class="Apple-converted-space">  </span>They didn’t believe me about how little I was eating until they saw me fail to eat anything at all for weeks in the hospital.<span class="Apple-converted-space">  </span>In their eyes, a fat person must be eating, even if that fat person was losing catastrophic amounts of weight.<span class="Apple-converted-space">  </span>It’s even worse for people with gastroparesis who experience weight <i>gain</i> as part of the symptoms, because anyone who has eating problems and is gaining weight has less likelihood of being believed by doctors, even though medicine knows perfectly well why this happens.</p>
<p class="p3">There were a few things that should have been big red flags for me, but I simply didn’t know enough to understand their significance.</p>
<p class="p3">One of them was that when I threw up, I would often throw up food from a long time ago.<span class="Apple-converted-space">  </span>Like from up to three days ago.<span class="Apple-converted-space">  </span>I just kind of assumed that the food was coming from somewhere really far down my digestive tract, but it was actually sitting in my stomach all that time.</p>
<p class="p3">Another one was that I always felt better if I didn’t eat, or barely ate, for days at a time.<span class="Apple-converted-space">  </span>There were times when I’d live on small amounts of broth, oatmeal, and grits for weeks or months at a time, and I always felt much healthier afterwards.<span class="Apple-converted-space">  </span>Most people don’t feel healthier after barely eating anything for a long time.</p>
<p class="p3">The constant nausea should have been a red flag, too.<span class="Apple-converted-space">  </span>But I was so used to weird symptoms that I honestly didn’t even think to classify that as especially weird.</p>
<p class="p3">Also, I had motility problems in other areas of my gut.<span class="Apple-converted-space">  </span>Ever since childhood, I had bad constipation, sometimes to the point of bowel impaction and blockages requiring emergency room trips and hospitalizations.<span class="Apple-converted-space">  </span>As an adult, they found that my esophagus had reduced motility as well, that it didn’t move food as fast as it should.<span class="Apple-converted-space">  </span>So my bowels move slowly, my esophagus moves slowly, it shouldn’t be a surprise that my stomach moves slowly as well.<span class="Apple-converted-space">  </span>But for some reason they never looked at that until that five-week hospitalization.</p>
<p class="p3">And what happened during that five-week hospitalization?<span class="Apple-converted-space">  </span>I’d aspirated again and gotten pneumonia.<span class="Apple-converted-space">  </span>I was very weak from not eating, from myasthenia-related reactions to vomiting, and from an impending adrenal crisis.<span class="Apple-converted-space">  </span>And I demanded that they keep me in the hospital until they figure out why I couldn’t eat, and figured out a way for me to get adequate nutrition again.</p>
<p class="p3">They got serious about it then.<span class="Apple-converted-space">  </span>They diagnosed the gastroparesis, although they wouldn’t do the final testing for another couple months.<span class="Apple-converted-space">  </span>They started me on that intense nausea medication regime.<span class="Apple-converted-space">  </span>They tried a bunch of antibiotics that are supposed to speed up your gut, but they just made me more nauseated.<span class="Apple-converted-space">  </span>And they started seriously considering a feeding tube.<span class="Apple-converted-space">  </span>Marinol is the only reason I didn’t get a feeding tube right then and there, from what I’m told.</p>
<p class="p3">At any rate, if you want to know more about gastroparesis, I’d urge you to visit the <a href="http://www.g-pact.org/">G-PACT</a> (<a href="http://www.g-pact.org/">Gastroparesis Patient Association for Cures and Treatments</a>) website, which deals with gastroparesis and related motility disorders and digestive tract paralysis.<span class="Apple-converted-space">  </span>If this sounds like you or <i>anyone</i> you know, please get help, because the longer you go without treatment, the less they can do in the end.<span class="Apple-converted-space">  </span>There aren’t a lot of treatments for gastroparesis, and the more extreme the gastroparesis, the more extreme and invasive the treatment is.<span class="Apple-converted-space">  </span>So you want to know if you have it, as early as possible.  The treatment I have &#8212; a feeding tube &#8212; is actually middle-of-the-road for gastroparesis treatments.  It&#8217;s invasive, but it can be removed, and you can still eat if you have one.  The most invasive treatments involve things like a stomach pacemaker, or removing your stomach entirely.  So you don&#8217;t want it to get that bad before you get treatment.</p>
<p class="p3">And it&#8217;s one of those diseases nobody seems to have heard about.  Which is one reason that I think awareness is important.  I know that the disability rights movement has a million different critiques of awareness, including the idea that it pits different diseases against each other.  But if I had simply known a few years before, what I learned when I was diagnosed, I could have been spared a lot.  I&#8217;m lucky to be alive, given the combination of diseases I have, and I&#8217;m far from the only person with gastroparesis whose health is fragile like that.  So I think it&#8217;s more important to get the word out than to do what the disability rights movement tells me to do about awareness months.  For things like this, awareness months are really important, because we haven&#8217;t got any other way of spreading the word to people who need to hear it.  If any of what I&#8217;ve written here, or in my last post, helps even one person, that will be enough.</p>
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