August is Digestive Tract Paralysis (DTP) Awareness Month

Digestive Tract Paralysis (DTP) refers to a group of conditions that affect the motility, or speed in which your body digests food and liquids, such as gastroparesis (GP), chronic intestinal pseudo obstruction (CIPO), and colonic inertia (CI). I have been diagnosed with esophageal dysmotility, gastroparesis, and colonic inertia and all have greatly effected my health and lifestyle.

Gastroparesis, or paralyzed stomach, is a condition where your stomach takes too long to digest and empty your stomach. GP can be primary, secondary, or idiopathic and can range from mild to severe (little to no motility). Common forms of secondary GP are diabetic GP, Post-abdominal surgery GP, post-viral GP, and GP from eating disorders. Some symptoms of GP according to GPACT are:

Early Satiety after a few bites of food

Nausea (especially after eating)

Vomiting (often undigested food from hours or even days before)

Abdominal Pain

Hiccupping

Excessive Belching

Bloating

Weight Gain

Weight Loss

Loss of Appetite

Malnutrition

Dehydration

Heartburn or gastroesophageal reflux which is not controlled by acid suppressants

Erratic blood glucose levels

Comic of stomach and intestine by the awkward yeti

 

For me, dysmotility has hijacked my love of food and made me realize how much our culture revolves around food. Out to dinner, snacks at the movies, family meals, holidays, snacking, period chocolate eating, late night iHOP runs, and lunch breaks at work. When you can’t eat or can only eat a few types of food in small amounts, you miss out on a lot. Not to mention if certain food smells make you nauseous- my DTP friends can probably relate to being nauseous and starving at the same time. Food is everywhere. DTP is part of the reason I have a feeding tube which givesme freedom but is also a pain. in. the. ass. I have to be fed into my intestine to bypass my damaged stomach (intestines are more functioning though also damaged). This requires being attached to a tube and pump anywhere from 12 to 24 hours a day.

But DTP doesn’t just effect eating, it effects medication absorption, acidity levels, bowel control, hydration, energy levels, weight, and definitely clothing sizes (bloating is no joke). We need a cure, we are starving for a cure. While there are some treatments available they often come with difficult side effects or are invasive. More research needs to be done for a cure to be found! To donate or find out more please visit the Gastroparesis Patient Association for Cures and Treatments (G-PACT)!

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WARNING: Might just be one long rant…

        Okay… so I wanted to touch on a bunch of different things that don’t have another home. I’m feeling very brain foggy/disorganized so if none of this makes sense… then it’ll probably at least be entertaining.
#1: How long it takes to get anything done in the medical world
Let me preface this with I ABSOLUTELY know this is not all on the medical professionals. There’s shit with insurance, documentation guidelines, hospital rules and regulations, and just overweighted caseload that influence this issue. But seriously, it gets ridiculous.
Some examples:

  • I met with a new GI July 22nd. He seemed on top of his game, familiar with my conditions, and agreed that action needs to be taken to get by nutrition etc back on track. He had lots of medical history, former testing, current summary… everything he needed. He ordered a SmartPill test (camera pill you swallow and it takes pictures and does testing as it goes through your GI tract… pretty cool) and an upper and lower scope (sticking cameras up your arse and down your throat…yum). I had already had a gastric emptying test to diagnose gastroparesis (delayed stomach emptying), but we had no idea the motility of my intestines or if they absorb any of the nutrients. Fast forward 4 weeks until my scheduled SmartPill test swallow. I had to go off all GI meds for a week (which means not only more of the daily yuck but near constant acid coming up my throat), get a ride to the hospital, fast beforehand, take off work etc etc. I get there and they’re (nurses) doing the pre-procedure checklist. They get to question #3 “do you have any implanted devices?”… “yes… but the doc knows about it… we talked about it”  “Let me give him a call”  *comes back 10 minutes later* “I’m sorry, the implant disqualifies you from doing this test, I have to cancel it… the doctor will give you a call (lol jk)”. Okay, so waste of time. I messaged my doc later (shock and awe… he never called) and asked if we could schedule the only other test one can do to get the same data as the SmartPill. His response: we will talk about it next appointment. So you’re thinking aight… that’s okay. Wrong. Not only is his first available not until mid-November, but his office won’t schedule any follow-up appointment until after I complete, and get the results back from the scope scheduled for September 14. So basically I’m SOL until at least December timeframe…. assuming that visit won’t just mean going over EGD results and him ordering the same test I asked him about months earlier. Don’t worry guys…it’s only nutrition.
  • It took my PT 3 weeks to write and sign a sentence saying “patient needs new custom wheelchair back to maintain posture and for support”.
  • It has taken my doc 5+ weeks (he was on vacation for one but still) to write and sign a prescription, note, and LOMN saying “patient needs custom bilateral AFOS”.
  • I’ve been waiting for records from one doctor for 13 months despite several verbal and written reminders to him and his staff.
#2: My two cents on the Epipen bull:
          As someone who is literally allergic to life (sunlight, heat, cold, stress, talking, meds etc) and must always have Epi on my person and has unfortunately had many uses of the autoinjectors I am pissed. But not just by Mylan (jerk face mcugly butts) jacking up the price of Epipens (500%), but the fact that I have multiple friends who have to make the choice between life-saving medicine, therapy, and treatments and feeding themselves or their kids.
And we aren’t even talking about those without insurance. Most of my friends are lucky enough to have some form of health insurance (even if its crappy) and are still drowning in bills and medical debt. There is not a single day that there isn’t a medical bill arriving at my house and that is just ERs, hospitals, and doctor’s bills. Plus medicine, devices, PT, testing, surgery, and prolotherapy (not covered by any insurance as it is “experimental”). I have been incredibly blessed with kick-ass insurance (although still a PITA) and to be able to stay afloat in the bills. Despite all kinds of preventative and prophylactic treatments, there is still only so much you can do to keep ahead of things and emergencies still happen. Epipens also only are viable for a year. They come in a 2 pack but most need more to keep one at school, one in the car, and one on your person. For most, it is now cheaper to go to the ER for anaphylaxis treatment than to use their Epipens. Honestly, all I got is “fuck you Mylan”. No excuses, epinephrine is cheap, autoinjectors are relatively cheap. Not to mention their tax evasion strategies.
#3: Depression
Since the people who 1) even read this blog and 2) read all the way til now and aren’t asleep from boredom are probably the people who care, I saved this one for last. As some of you have noticed, I’ve been dipping into another depressive phase. Depression and me are buddies now so it’s cool. It is also normal and a big part of chronic illness so don’t go panic on me. So don’t be alarmed if I’m a) super clingy and annoying or b) super avoidant and grumpy gills … that’s kinda just how it goes. See previous post RE: things you can do to help.
Aight. That’s all for now….