Author: Melissa VanHouten

Gastroparesis patient and advocate

Green Candles

Posted on by Melissa VanHouten
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I no longer have unique or special words to announce passings in our #Gastroparesis community. I have offered prayers and condolences so many times that I cannot find a new way to express my sorrow. I want to curl up and hide somewhere on the days I must make these posts.

This grief and these deaths, this fear that it will be one of my very close friends today or that perhaps it will soon be me, this love I have for all those who have passed away and for all those who very well could, this is why I advocate. These people, who fight so hard to stay alive and to remain upbeat, to live their lives as if the threat of death did not hang just above them – they are why I cannot remain silent. It is because of the many souls in our GP community who come into our groups every single day and do their best to spread cheer, offer advice and information, and speak kind words to those in dire need that I do not sit and stew in my grief. And it is for those poor, weary, struggling friends who are in physical agony, who are fighting alone with no one to help them or comfort them, who can no longer afford to care for themselves and their families because of their hopeless financial situations – the mounting medical bills and unemployment, that I pull out my soapbox and encourage others to do the same.

I hate these green candles for the deaths they proclaim, but I love them for the beautiful souls they represent. These are not people who “gave up” or “lost” the fight. Nothing could be further from the truth. No, they battled as hard and as long as they could against a vicious illness that robbed them of everything and against which they had few weapons. The flame on these candles has not been snuffed out; it forever burns to symbolize the endless effort these individuals put forth to persevere despite all the hardships. These are not people who failed; they gave it their all and fought to their last breath. They inspire us and compel us to continue to wage our own wars against the cruel illness that ravages our bodies.

They remind us that even in the midst of pain, grief, and looming death, life is precious, and we must live it to the fullest because we are not guaranteed a single day. They implore us to believe that we did nothing to deserve this affliction, that we are not worthless, or valueless, or insignificant, or “lesser” because we fell ill, and that our lives MATTER. We are ALL fighters, and we are doing the very best we can to survive.

But we merit so much more than mere subsistence. Indeed, our goal is to flourish. We desire and warrant treatments that allow us to thrive. We seek the kind of support and respect, treatment and conditions, and attention to our needs that will allow us to genuinely LIVE our lives rather than spend them in hospital beds and dark lonely rooms, struggling to meet basic needs, consumed with pain and fear. We deserve a life free from the limitations imposed by Gastroparesis.

And so, I advocate – day after day, all day long, without ceasing. I post on my personal pages, in groups, all over social media, and on websites. I write articles and poems, create memes and graphics, establish and administer groups, and invite you to “green” events. It is my duty to myself and to all the members of this community to do so. I cannot look away and pretend that all is well. I cannot ignore the pain, loneliness, hopelessness, despair, and death that surround me – and I hope that none of you can either.

I ask you all – members and non-members of the Gastroparesis community alike – to please help us in our efforts to find an end to this life-altering, destructive, and often deadly disease. I ask you to sign our petitions, support our bills and proclamations, send letters to your congressional representatives, and light your green candles for those who have fallen. Educate your family, your friends, your doctors, the media, and the public. Join our events and shout our pleas from the rooftops and streets if necessary. DEMAND better treatments and a cure for those in the GP community.

Please do not avert your glance. Do not ignore our pleas. There is no one else – only you. We will not be magically cured or relieved of our burdens. We need YOUR help – every single one of you, ill or healthy. We cannot afford to sit back, back down, remain complacent or apathetic, or cease our awareness efforts. Our very lives depend on it. How many more candles can we bear?

#CureGP #RealGP

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Gastroparesis: The Basics

Posted on by Melissa VanHouten

What is gastroparesis?

Gastroparesis  means “paralysis of the stomach.”  It is a digestive motility disorder in which the stomach muscles, controlled by the Vagus nerve, fail to contract and move food from the stomach into the intestines at the proper rate.  Under normal conditions, the stomach stores food only long enough for it to be ground down into small pieces by contracting stomach muscles in preparation for further digestion in the intestines.  This process is slowed in those with gastroparesis, resulting in food being “stored” in the stomach for an abnormally long period of time.

What are the symptoms of gastroparesis?

Gastroparesis is marked by one or more of these symptoms:

  • Nausea
  • Vomiting
  • Bloating/Distension
  • Early Satiety
  • Stomach/Abdominal pain
  • Gerd/Acid Reflux
  • Weight Fluctuations (Loss/Gain)

What are the complications which can result from gastroparesis?

Complications of gastroparesis may include:

  • Erratic Blood Sugars
  • Chronic fatigue
  • Esophageal Damage
  • Bezoars/Intestinal Tract Blockages
  • Dehydration
  • Malnutrition

How is gastroparesis diagnosed?

Gastroparesis is most commonly diagnosed by the Gastric Emptying Study (GES), a procedure in which radioactive material (food) is traced by a scanner as it moves through one’s digestive tract.  This test allows one’s doctor to track the rate at which food travels from the stomach to the small intestine.  Other methods of diagnosis include upper endoscopy, barium x-rays, gastric manometry, and the wireless motility capsule (Smart Pill) which, when swallowed, transmits data regarding the rate of passage through the digestive tract.

Though the Gastric Emptying Study is still considered the “gold standard” of diagnosis, there are issues and limitations associated with this study, as it is simply a snapshot of a moment in time.  Test results can vary widely over time , and so, it is not uncommon, for example, for one test to show severe delay and another follow-up study to show mild delay or even normal emptying rates.  Consuming the recommended standardized meal, tracking emptying rates for 4 hours (rather than the 90-minute or 2-hour tests offered by some facilities), testing for both a delay in solids and in liquids, and stopping all medications which could interfere with the results (as directed by your physician) can help to produce the most accurate emptying measures.  

Diagnosis can be difficult even under the best of circumstances.  Some patients find they experience “flares,” or periods of severe symptoms, followed by relatively symptom-free days, and, so, the timing of doctor visits and testing might be a factor in obtaining an accurate diagnosis.  And to complicate the situation further,  symptom severity does not necessarily correlate with the rate of emptying, resulting in some patients with severely delayed emptying having only mild symptoms and others with minor delays in emptying experiencing quite severe symptoms.  In addition, symptoms often overlap with or mimic other conditions (such as functional dyspepsia or IBS).  Diagnosis should, then,  be based on a number of considerations, including test results, patient symptoms and history, and the elimination of other possible symptom causes.

What are the causes of gastroparesis?

Common causes of gastroparesis include:

  • Idiopathic (no known or easily identifiable cause)
  • Diabetes
  • Vagus Nerve Damage
  • Connective Tissue Disorders
  • Autoimmune Disorders
  • Neuromuscular Disorders
  • Certain Types of Cancer/Cancer Treatments
  • Viruses
  • Some Medications
Diabetes is the most common known cause of gastroparesis, accounting for about one-third of the cases.  Other known causes include neurologic and connective tissue disorders, surgical complications, medications, and direct damage to the Vagus nerve.  Most cases of gastroparesis, however, are labeled “idiopathic,” meaning there is no known or easily identifiable cause.

What are the common treatments for gastroparesis?

There are variations in symptoms and levels of severity of gastroparesis, and individuals respond differently to the available treatment approaches.  In general, patients struggle to maintain nutrition levels and are at risk of malnutrition and/or dehydration due to their inability to ingest and absorb nutrients.  There is no scientifically-known cure for gastroparesis, and, so, treatments tend to focus on symptom control and may gradually progress to greater levels of intervention, based on how well or poorly one responds to each step in the treatment plan.  

Treatments may include:

  • Dietary Changes
  • Medications
  • Alternative Therapies
  • Tube Feedings or TPN
  • Gastric Stimulator and/or Other Surgeries

The basic GP diet calls for small, frequent, low-fat, low-fiber, high-protein foods and liquids (at tolerable levels) which are easier to digest. Many diet plans call for a 3-step process, beginning with a liquid-only diet and then progressing to soft-foods (low-residue, low-fat), and eventually, a maintenance diet (which adds just a bit more fat as well as some well-cooked, easy to chew foods).

In reality, many find the basic diet plan difficult to follow, as tolerances vary, and it must be tailored to fit individual needs. In short, what works for one might not work for another, so it is largely a process of trial and error. To complicate this further, many of us find that our food tolerances can change from day-to-day and over time. So, what works for us one day might not work the next.

Some find they get “stuck” on one “step” in the diet or that they move up and down the steps rather than steadily progressing. Others find that, though they follow the plan precisely, they have little to no tolerance of the recommended foods and liquids and cannot maintain adequate hydration and nutrition levels.

When this is the case, medications such as prokinetics and antiemetics may be helpful. But some must also resort to methods which provide supplemental nutrition, such as feeding tubes and TPN (intravenous feeding).

We recommend keeping a food journal which notes your daily intake and any reactions, intolerances, or worsening symptoms you experience. This might assist you in finding patterns over time. Further, we suggest “testing the waters” by slowly and gradually adding one or two liquids/foods, in small amounts. Be mindful of the guidelines and note what works for others, but do not be surprised if your tolerances differ from those of others, and be willing to tailor the diet plan to suit your individual needs. You must do what works best for you!

If you find you are not maintaining adequate hydration and nutrition levels, consider asking your doctor for a referral to a dietitian or speak with your provider about the possibility of other methods of supplementation.

[See: https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2014/04/Gastroparesis-and-DM-02.23.17-1.pdf and http://www.arizonadigestivehealth.com/gastroparesis-diet/ for guidelines and sample diet plans.]

Is gastroparesis common?

According to the National Institutes of Health (NIH), an estimated 5 million people or more live with gastroparesis; yet, this illness is still little-known to the public and often misunderstood by healthcare professionals who impact our care.  This lack of knowledge can lead to under-diagnosis and/or delayed diagnosis and treatment.

Is gastroparesis progressive?

Gastroparesis can be but is not necessarily progressive.  Some patients improve over time, while others find their condition worsens.  Some note little to no change in their symptoms or severity level over time.  Many patients experience fluctuations between (sometimes lengthy) symptom-free, remission-like periods and symptom-heavy flares.

Progression depends largely on the cause and on how well one responds to dietary changes and available treatments.  In some cases, treating the underlying cause (such as Diabetes), can lead to significant symptom improvement.  In other cases (such as post-viral gastroparesis or gastroparesis brought on by medications), the scientific literature indicates the condition can (but not necessarily will) resolve itself over time.  

Regardless of severity level, cause, or pattern, there is no scientifically-known cure for gastroparesis and no one treatment which benefits all.  Progression and effectiveness of treatments are highly individualized.

Is there help for me?

There are many sources of help to which you might turn.  Our “Resources” section includes a list of our various support groups, blogs, social media links, and other credible sources of information which  will assist you in this regard.  In addition, we are always happy to hear from you and will gladly answer your questions and/or assist you in finding additional resources.  You can reach us through the contact form on the website or via e-mail at info@curegp.org.

*Please note that any recommendations offered are opinion only and cannot substitute for professional medical advice.  Please consult your medical team for proper individualized care.

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