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Sunday, October 28, 2018

The Many Causes of Gastroparesis & Treatment Options

Gastroparesis can be caused by many things. My Gastroparesis is Idiopathic, according to the US National Library of Medicine National Institutes of Health, it means, "delayed gastric emptying can be due to muscular, neural, or humoral abnormalities. In the absence of an identified cause, gastroparesis is labelled as Idiopathic." I suspect I have had it since I was sixteen. I became really sick and was running a high fever, so my mom took me to the Emergency Room. I was admitted and taken for emergency surgery because my GI thought I had appendicitis. When they went in for abdominal surgery, the doctor found that my appendix was fine. Furthermore, I had ovarian cysts that had ruptured, and the fluid was sitting in my abdomen causing a bad infection. The doctors cleaned out my abdomen, but took my appendix anyway. I have been vomiting since then.

I decided to do an article exploring what causes Gastroparesis. I have been asked this a lot by newly diagnosed Gastroparesis Warriors, and I was curious to see if anything has changed, especially given all of the awareness to this illness that the wonderful members of the GP Community have dedicated themselves to in the past few years. I also wanted to have an article written about what causes Gastroparesis, so that people who are having symptoms of this illness, can have something to refer back to so that the doctor will know what tests to run. If you think you might have Gastroparesis, definitely talk to your Gastroenterologist.

I keep a journal, like so:

Your journal could be a spiral notebook, a binder, a lab notebook, just anything, really. I have two separate ones.

I write down any questions I have for the doctor, and print out research, to put it in the journal and ask the doctor about it. Finally, I ask questions in support groups and write down the answers I get, or print them out and stick them in my journal. Furthermore, if I think a question is interesting that someone else posted, I will print out that posting with the questions and places them in my blog to talk to the doctor about, as well. You can put your medication times, what you take, and how often in there to keep up with things. Additionally, you can write about your diet; what you have eaten, how many servings you had, calories, fiber (since with GP it is hard to digest fiber), and food allergies. If you get sick, put how many times you got sick, and what the time was. You might be able to see a pattern that can be graphed and followed.

What is Gastroparesis?

This is a video, uploaded by a doctor, that will explain Gastroparesis, but also contains graphic images during an exploratory abdominal surgery (this is warning to those of you who are squeamish):

Source: Located on Image

According to Active Beat,

"Gastroparesis is the literal paralysis of the stomach, characterized as a condition that inhibits the stomach from emptying properly. Gastroparesis affects stomach contractions, which move food from the stomach into the large intestine where digested food is emptied. If stomach contractions don’t work to empty the stomach properly, gastro-discomfort can occur (i.e., nausea, bloating, vomiting) and individuals can suffer nutritional deficiencies as a result.

Here are six common causes and symptoms that accompany Gastroparesis:

Existing Medical Conditions

The most common causes linked to Gastroparesis include existing health conditions, such as a viral infection, eating disorder, cancer with radiation and/or chemotherapy, and gastric surgery (or stomach surgery) that causes vagus nerve damage. Specific medications can also trigger gastroparesis (i.e., progesterone, lithium, antidepressants, clonidine, and calcium channel blockers). Use of nicotine, especially smoking over the long term is also common in gastroparesis patients.

Certain chronic diseases—such as uncontrolled diabetes, hypothyroidism, multiple sclerosis, and Parkinson’s disease—have also been associated with the development of gastroparesis. Rare conditions that impact the functioning of connective tissues, blood vessels, skin, muscles, and internal organs (i.e., scleroderma and amyloidosis) have also been linked to causing digestive stomach issues.


Doctors often have issue pinpointing the exact cause of Gastroparesis. Diagnosis with unknown cause is common and known as Idiopathic Gastroparesis by health professionals.

Even though the cause of idiopathic gastroparesis remains unknown, researchers the Mayo Clinic claim that women ranging from young to middle aged are at highest risk of developing idiopathic gastroparesis.

According to the US National Library of Medicine and National Institutes of Health,

"{Gastroparesis is a chronic symptomatic disorder of the stomach characterized by delayed emptying without evidence of mechanical obstruction. The main causes of gastroparesis are diabetic, postsurgical, and idiopathic. Idiopathic gastroparesis refers to gastroparesis of unknown cause, that is, not from diabetes, not from prior gastric surgery, and not related to other endocrine, neurologic, rheumatologic causes of gastroparesis. The gastroparesis should not be related to medications that can delay gastric emptying, such as narcotic analgesic or anticholinergic medications. There is overlap in the symptoms of idiopathic gastroparesis and functional dyspepsia. A substantial minority of patients with functional dyspepsia can have delayed gastric emptying, blurring the distinction between idiopathic gastroparesis and functional dyspepsia. Patients with idiopathic gastroparesis often have a constellation of symptoms including nausea, vomiting, early satiety, postprandial fullness, and upper abdominal pain. Although the presentation of idiopathic gastroparesis is relatively similar to diabetic gastroparesis, abdominal pain occurs more often in idiopathic gastroparesis, whereas nausea and vomiting are more severe in diabetic gastroparesis. Treatment may employ agents used for diabetic gastroparesis and functional dyspepsia, including dietary management, prokinetics agents, antiemetic agents, and symptom modulators. Current treatment options do not adequately address clinical need for idiopathic gastroparesis.

Gastroparesis is a chronic symptomatic disorder of the stomach manifested by delayed emptying without evidence of mechanical obstruction (1,2). The common causes of gastroparesis include diabetic, postsurgical, and idiopathic (1,2). Idiopathic gastroparesis refers to gastroparesis of unknown cause; that is, not from diabetes, not from prior gastric surgery, and not related to other endocrine, neurologic, rheumatologic causes of gastroparesis. In addition, it is not related to medications that can delay gastric emptying. Medications known to delay gastric emptying include opiate narcotic analgesics and anticholinergics (1).

In most series, idiopathic gastroparesis is the most common category for gastroparesis. In the series reported by McCallum et al (3), the etiologies in 146 patients were: 36% idiopathic, 29% diabetic, and 13% postgastric surgery, 7.5% Parkinson’s disease, 4.8% collagen vascular disorders, 4.1% intestinal pseudoobstruction, and 6% miscellaneous causes. Miscellaneous causes of gastroparesis include other neurologic diseases, eating disorders, other metabolic or endocrine conditions (hypothyroidism), and critical illness.

This chapter discusses idiopathic gastroparesis, that is, symptomatic gastroparesis not from other known etiologies. This chapter updates the present status of our understanding of this disorder and reviews the recent studies from the NIH NIDDK Gastroparesis Consortium.


Gastroparesis occurs more often in women than men, often by a 3:1 margin. Interestingly, this is true not only for idiopathic gastroparesis, but also for the other main causes of gastroparesis - diabetic and postsurgical. Patients with idiopathic gastroparesis are typically young or middle-aged women. Even after adjusting for gender differences in gastric emptying, since females in general have slower gastric emptying than males (4), gastroparesis occurs more commonly in women (5).

Outside of gender issues and etiology, the epidemiology of gastroparesis has not been well systematically studied. This stems from the fact that for proper diagnosis, a gastric emptying test is needed; one that presently cannot be done in population studies. Data from the Rochester Epidemiology Project, a database of linked medical records of residents of Olmsted County, Minnesota, showed that the age-adjusted incidence of definite gastroparesis per 100,000 person-years for the years 1996 to 2006 was 9.8 for women and 2.4 for men (6). Definite gastroparesis was defined as diagnosis of delayed gastric emptying by standard scintigraphy and symptoms of nausea and/or vomiting, postprandial fullness, early satiety, bloating, or epigastric pain for more than 3 months. The age-adjusted prevalence of definite gastroparesis per 100,000 persons was 37.8 for women and 9.6 for men. More recent estimates have suggested that the prevalence of gastroparesis were an underestimation and the prevalence is greater, approaching 2% of the general population (7).


Common symptoms of gastroparesis include nausea (>90% of patients), vomiting (84% of patients), and early satiety (60% of patients) (1,2,3). Other symptoms include postprandial fullness and upper abdominal pain (8). There is slight variation in symptoms depending on the etiology of gastroparesis: abdominal pain occurs more often in idiopathic gastroparesis than in diabetic gastroparesis (8), whereas nausea and vomiting are more severe in diabetic gastroparesis then in idiopathic gastroparesis (9). In patients with gastroparesis, weight loss, malnutrition, and dehydration may be prominent in severe cases.

There is overlap in the symptoms of idiopathic gastroparesis and functional dyspepsia. Abdominal pain or discomfort may be present to varying degrees in patients with gastroparesis, but it is not usually the predominant symptom, as it can be in functional dyspepsia (10). A substantial minority of patients (20–40%) with functional dyspepsia can have delayed gastric emptying (10), blurring the distinction between idiopathic gastroparesis and functional dyspepsia. Patients with idiopathic gastroparesis often have a constellation of symptoms including nausea, vomiting, early satiety, postprandial fullness, and upper abdominal pain.

Symptoms may fluctuate, with episodes of pronounced symptoms interspersed with relatively symptom-free intervals. Thus, at times, it can be difficult to differentiate idiopathic gastroparesis from cyclic vomiting syndrome (CVS), especially in the later when there can be a “coalescence of symptoms”, such that they can occur nearly daily rather than as typical for CVS with the vomiting episodes more sporadic on a monthly or less frequent basis (11). In CVS, gastric emptying is normal or often, it can be rapid (11)

The symptom profile and symptom severity of gastroparesis can be assessed with the Gastroparesis Cardinal Symptom Index (GCSI) (12), a subset of the Patient Assessment of Upper Gastrointestinal Symptoms (PAGI-SYM) (13). The GCSI comprises 3 subscales (nausea and vomiting, postprandial fullness and early satiety, and bloating) that the patient scores with reference to the preceding 2 weeks (12). The GCSI daily diary (GCSI-DD) can be used to record symptoms on a daily basis and may be more accurate in recording symptoms (14). This daily diary of symptoms captures symptoms of early satiety, nausea, vomiting, postprandial fullness, and upper abdominal pain. This questionnaire has been shown to capture relevant symptoms of gastroparesis in both patients with diabetic gastroparesis and idiopathic gastroparesis.

Although it has been a common assumption that the gastrointestinal symptoms can be attributed to the delay in gastric emptying characteristic of the disorder, most investigations have observed only weak correlations between symptom severity and the degree of gastric stasis (15,16). In general, the symptoms that appear to be best correlated (significant, but low correlation coefficients of 0.2 to 0.3) with a delay in gastric emptying include nausea, vomiting, early satiety, and postprandial fullness (17,18). Some symptoms present in patients with gastroparesis such as bloating and upper abdominal pain, are not correlated with delayed gastric emptying and might be related to sensory alterations that might also be present in patients with gastroparesis (18).

Most gastroparetic patients are underweight probably because of frequently experienced early satiety, nausea, and vomiting. Some gastroparesis (GP) patients, however, are overweight, for reasons that are not well understood. In a recent study, the factors that influence bodyweight in patients with idiopathic GP and in healthy controls were investigated (19). Thirty-nine healthy controls and 29 subjects with idiopathic GP underwent resting energy expenditure (indirect calorimetry), body composition (bioelectrical impedance), dietary intake (Block Food Frequency Questionnaire), symptoms (Patient Assessment of Upper GI Symptoms), and physical activity (Paffenbarger exercise survey) were assessed. Both median caloric intake (1242 vs 1804 kcal; p=0.005) and caloric expenditure (486 vs 2172 kcal; p<0.01) were significantly lower in patients with GP as compared to controls, although BMI (25.8±5.8 vs 24.3±4.0 kg/m2) and resting energy expenditure (1327±293 vs 1422±243 kcal) were similar. Interestingly, the 12 GP patients who had gained weight since diagnosis had lower symptom severity (12.9±4.4 vs 19.3±6.3; p < 0.05), consumed more calories (1342 vs 1134 kcal; p=0.08) and expended less calories for activity per week (406 vs 644 median kcal; p=0.45) compared to the 17 GP patients who had lost weight or remained weight neutral. Thus, patients with GP consumed and expended less calories than healthy controls. A subgroup of patients with GP who were less symptomatic, gained weight because of increased caloric intake and reduced energy expenditure. NIH Gastroparesis Consortium Registry Studies in Idiopathic Gastroparesis The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Gastroparesis Clinical Research Consortium (GpCRC) is a cooperative network of seven clinical centers and one Data Coordinating Center (DCC) funded through the NIDDK of the National Institutes of Health (NIH). The GpCRC Gastroparesis Registry was implemented as an observational study of patients with gastroparesis enrolled prospectively at seven centers (20). Several of the published studies have addressed idiopathic gastroparesis. The characteristics of 243 patients with idiopathic gastroparesis enrolled in the GpC Registry were recently described (20). This study is the largest study of patients with idiopathic gastroparesis. Patients’ mean age was 41 years, and the majority (88%) were female. The most common presenting symptoms were nausea (34%), vomiting (19%), and abdominal pain (23%). Severe delay in gastric emptying (>35% retention at 4 hours) was present in 28% of patients and was associated with more severe symptoms of nausea and vomiting and loss of appetite compared with patients with mild or moderate delay. Of these patients with idiopathic gastroparesis, 86% met criteria for functional dyspepsia, predominately postprandial distress syndrome. Of interest, 46% of the patients were overweight. Thus, this study shows that idiopathic gastroparesis is a heterogeneous syndrome that primarily affects young women and can also affect overweight or obese individuals.

Although gastroparesis can be diabetic or idiopathic, little is known about differences in their presentation. The GpC compared clinical characteristics, symptoms, and gastric emptying in patients with idiopathic gastroparesis (IG) to patients with type 1 or type 2 diabetic (DG) (21). 416 patients with gastroparesis were analyzed; 254 had IG, and 137 had DG (78 had type 1 and 59 had type 2). Symptoms that prompted evaluation more often included vomiting for DG and abdominal pain for IG. Patients with DG had more severe retching and vomiting than those with IG, whereas patients with IG had more severe early satiety and postprandial fullness subscores. Compared with IG, gastric retention was greater in patients with type 1 DM. Thus, there are many similarities and some differences in clinical characteristics of DG and IG. Gastroparesis is a heterogeneous disorder; the etiology of the gastroparesis impacts on the symptoms and severity.

Abdominal pain can be present in patients with idiopathic gastroparesis. Factors associated with abdominal pain in gastroparesis have not been well studied. The NIH GpC studied the symptom of abdominal pain and how it relates to other clinical factors in 393 gastroparesis patients (22). Upper abdominal pain was moderate-severe in 261 (66%) patients. Pain/discomfort was predominant in 81 (21%); nausea/vomiting was predominant in 172 (44%). Moderate-severe pain was more prevalent with idiopathic gastroparesis than in diabetic gastroparesis and correlated with scores for nausea/vomiting and opiate use, but not gastric emptying. Gastroparesis severity, quality of life, and depression and anxiety were worse with moderate-severe pain. Predominant pain/discomfort was associated with impaired quality of life. Thus, moderate-severe abdominal pain is prevalent in gastroparesis, impairs quality of life, and is associated with idiopathic etiology, and opiate use. Pain was predominant in one fifth of gastroparetics. Predominant pain has at least as great an impact on disease severity and quality of life as compared to the more classic symptoms of predominant nausea/vomiting.

Bloating is commonly reported in gastroparesis, but is an underappreciated symptom of gastroparesis. The prevalence of bloating in gastroparesis and its severity was assessed in 335 gastroparesis patients (23). Bloating severity of at least severe (GCSI ≥4) grades was reported by 41% of patients. Bloating severity related to female gender and overweight status and correlated with intensity of nausea, postprandial fullness, visible distention, abdominal pain, and altered bowel function. Antiemetics, probiotics, and antidepressants with significant norepinephrine reuptake inhibitor activity may affect reports of bloating. Disease-specific quality of life and general measures of well-being were progressively impaired with increasing bloating severity. Thus, the symptom of bloating impairs quality of life but is not influenced by gastric emptying rates.

Many patients with gastroparesis have had their gallbladders removed; how this impacts on gastroparesis is not known. The clinical presentations of patients with gastroparesis were compared in those with prior cholecystectomy compared to patients who have not had their gallbladder removed (24). Of 391 subjects with diabetic or idiopathic gastroparesis (IG), 142 (36 %) had a prior cholecystectomy. Patients with prior cholecystectomy were more often female, older, and overweight or obese. Cholecystectomy had been performed in 46% of T2DM compared to 24% of T1DM and 38% of IG. Patients with cholecystectomy had more comorbidities, particularly chronic fatigue syndrome, fibromyalgia, depression, and anxiety. Postcholecystectomy gastroparesis patients had increased health care utilization, and had a worse quality of life. Etiology was not independently associated with a prior cholecystectomy. Thus, symptom profiles in patients with and without cholecystectomy differ: postcholecystectomy gastroparesis patients had more severe upper abdominal pain and retching and less severe constipation. These data

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A potential cause in some patients with idiopathic gastroparesis has been suggested to be viral injury to the nerves or muscles of the stomach – postviral gastroparesis. It has been suggested that idiopathic gastroparesis of acute onset with infectious prodrome could constitute postviral or viral injury to the neural innervation of the stomach or the interstitial cells of Cajal in the stomach. In the NIH GpC study of idiopathic gastroparesis, half the patients had an acute onset of symptoms with a minority of patients (19%) reported an initial infectious prodrome such as gastroenteritis or respiratory infection (20). In the McCallum series, postviral gastroparesis was suspected in 23% of patients with idiopathic gastroparesis (25). This clinical diagnosis of postviral gastroparesis is suggested in previously healthy persons with an acute onset of viral illness with nausea, vomiting, diarrhea, fever, and cramps who have persistence of symptoms (nausea, vomiting, early satiety) for more than 3 months with a delay in gastric emptying. Viruses suspected as potential causes are cytomegalovirus (CMV), Epstein–Barr virus, and herpes varicella-zoster. Symptoms of idiopathic gastroparesis after a presumed viral illness tend to be less severe than in gastroparesis from other causes. Overall, these patients appear to have a good prognosis, with many patients having a slow resolution of their symptoms (25).

Gastric emptying is mediated by the vagus nerve, which helps regulates fundic accommodation, antral contraction, and pyloric relaxation (1). These regional gastric motility changes with food ingestion are then mediated through smooth muscle cells, which control stomach contractions; interstitial cells of Cajal, which regulate gastric pacemaker activity; and enteric neurons, which initiate smooth muscle cell activity (1). The pathophysiology of gastroparesis has not been fully elucidated but appears to involve abnormalities in functioning of several elements including autonomic nervous system, smooth muscle cells, enteric neurons, and interstitial cells of Cajal. Histologic studies in gastroparesis patients demonstrate defects in the morphology of enteric neurons, smooth muscle cells, and interstitial cells of Cajal and increased concentrations of inflammatory cells in gastric tissue (26).

NIH Gastroparesis Consortium Studies on Pathology
Cellular changes associated with diabetic (DG) and idiopathic gastroparesis (IG) have recently been described from gastroparesis patients by the NIH GpC. Full-thickness gastric body biopsy specimens were obtained from 40 patients with gastroparesis (20 diabetic) and matched controls (27). Histologic abnormalities were found in 83% of patients. The most common defects were loss of ICC with remaining ICC showing injury, an abnormal immune infiltrate containing macrophages, and decreased nerve fibers. On light microscopy, no significant differences were found between diabetic and idiopathic gastroparesis with the exception of nNOS expression, which was decreased in more patients with idiopathic gastroparesis (40%) compared with diabetic patients (20%) by visual grading. On electron microscopy, a markedly increased connective tissue stroma was present in both disorders. This study suggests that on full-thickness biopsy specimens, cellular abnormalities are found in the majority of patients with gastroparesis. The most common findings were loss of Kit expression, suggesting loss of ICC, and an increase in CD45 and CD68 immunoreactivity. These findings suggest that examination of tissue can lead to valuable insights into the pathophysiology and possibly treatments for the patient.

The association of these cellular changes in patients with gastroparesis with gastroparesis symptoms and gastric emptying was recently reported (28). Idiopathic gastroparesis with a myenteric immune infiltrate scored higher on the average GCSI and nausea score as compared to those without an infiltrate. Interstitial cells of Cajal counts inversely correlated with 4 h gastric retention in DG but not in IG. There was also a significant correlation between loss of ICC and enteric nerves in DG but not in IG. Thus, in DG, loss of ICC is associated with delayed gastric emptying. Interstitial cells of Cajal or enteric nerve loss did not correlate with symptom severity. Overall clinical severity and nausea in IG is associated with a myenteric immune infiltrate. Thus, full thickness gastric biopsies can help define specific cellular abnormalities in gastroparesis, some of which are associated with physiological and clinical characteristics of gastroparesis.


Management of gastroparesis is guided by the goals of correcting fluid, electrolyte, and nutritional deficiencies; identifying and treating the cause of delayed gastric emptying (e.g., diabetes); and suppressing or eliminating symptoms (1,2). Treatment of the symptoms may employ agents used for diabetic gastroparesis and functional dyspepsia. Care of patients generally relies on dietary modification, prokinetics medications that stimulate gastric motor activity, antiemetic drug therapy to suppress symptoms of nausea and vomiting, and symptom modulators (psychotropic agents) that reduce symptom expression. Narcotic analgesics should be avoided. Although narcotic analgesics may acutely improve abdominal pain, with chronic use, they delay gastric emptying, may themselves lead to symptoms of nausea and vomiting, may upregulate abdominal pain, and lead to dependence. Total parenteral nutrition, although used in some refractory patients, is associated with complications of infections and thrombosis. Aspects on treatment are discussed in detail in later chapters on treatments for gastroparesis. Particulars of treatment in idiopathic gastroparesis are discussed below.

Dietary aspects in gastroparesis

Gastroparesis can lead to food aversion, poor oral intake, and subsequent malnutrition. In the NIH GPC gastroparesis registry, dietary intake and nutritional deficiencies were characterized in 305 patients with diabetic and idiopathic gastroparesis (29) who completed diet questionnaires (Block Food Frequency Questionnaire). Caloric intake averaged 1168±801 kcal/day, amounting to 58%±39% of daily total energy requirements (TER). A total of 194 patients (64%) reported caloric-deficient diets. Only 5 patients (2%) followed a diet suggested for patients with gastroparesis. Deficiencies were present in several vitamins and minerals; patients with idiopathic disorders were more likely to have diets with estimated deficiencies in vitamins A, B6, C, K, iron, potassium, and zinc than diabetic patients. Only one-third of patients were taking multivitamin supplements. More severe symptoms (bloating and constipation) were characteristic of patients who reported an energy-deficient diet. Surprisingly, only 32% of patients had nutritional consultation after the onset of gastroparesis; consultation was more likely among patients with longer duration of symptoms and more hospitalizations and patients with diabetes. Multivariable logistic regression analysis indicated that nutritional consultation increased the chances that daily TER were met (odds ratio, 1.51; P=0.08). Thus, many patients with gastroparesis have diets deficient in calories, vitamins, and minerals. Most patients are not following a “gastroparesis diet”. Nutritional consultation is obtained infrequently, especially in idiopathic gastroparesis. A nutritional consultation may be helpful for instructions on dietary therapy and to address nutritional deficiencies.

Source: Located on Image

Source: Located on Image

I also have information on my blog regarding the Gastroparesis Diet, including recipes and links to more recipes:

Psychotropic medications as symptom modulators

Gastroparesis is a challenging syndrome to manage, with few effective treatments and lack of rigorously controlled trials. Symptom modulators (psychotropic agents such as tricyclic antidepressants) are often used to treat refractory symptoms of nausea, vomiting, and abdominal pain. Evidence from well-designed studies for this use is lacking. Tricyclic antidepressants may have benefits in suppressing symptoms in some patients with nausea and vomiting as well as patients with abdominal pain. Doses of tricyclic antidepressants used are lower than used to treat depression. A reasonable starting dose for a tricyclic drug is 10–25 mg at bedtime. If benefit is not observed in several weeks, doses are increased by 10- to 25-mg increments up to 75 mg. Side effects are common with use of tricyclic antidepressants and can interfere with management and lead to a change in medication in some patients. The secondary amines, nortriptyline and desipramine, may have fewer side effects than amitriptyline which itself may delay gastric emptying. The recent NIH gastroparesis consortium study with nortriptyline in idiopathic gastroparesis did not show an effect on overall symptoms of gastroparesis (30). However, there was a suggestion that low nortriptyline doses (10–25 mg qhs) might decrease nausea, whereas higher doses might decrease fullness. The recently completed NIH functional dyspepsia treatment trial showed a favorable effect for amitriptyline for functional dyspepsia – this was seen in patients with normal gastric emptying, but not in those with delayed gastric emptying (31).

Gastric electric stimulation

Gastric electric stimulation is a treatment for refractory gastroparesis involving implantation of neurostimulator. The currently approved stimulator delivers a high-frequency (12 cpm), low-energy signal with short pulses to the gastric muscle along the greater curvature. Based on the initial studies that have shown symptom benefit with low complications, the gastric electric neurostimulator was granted humanitarian approval from the FDA for the treatment of chronic, refractory nausea and vomiting secondary to idiopathic or diabetic gastroparesis (32). Symptoms of vomiting improved with gastric stimulation. This symptomatic benefit was primarily seen in patients with diabetic gastroparesis than in idiopathic gastroparesis (32). In the study by Maranki et al (33), three predictive factors for clinical improvement with gastric electric stimulation were found: 1) diabetic rather than idiopathic etiology; 2) predominant symptoms of nausea and/or vomiting rather than abdominal pain; 3) lack of the use of regular narcotic pain medications. In this series, gastric electric stimulation significantly improved symptoms of nausea and vomiting, but not abdominal pain. In a recently reported, prospective study of gastric electric stimulation for idiopathic gastroparesis (34), there was a reduction in vomiting during the initial 6 week open label ON treatment period. A double-blind 3-month period showed a non-significant reduction in vomiting in the ON vs OFF period, the primary outcome variable. At 12 months with open label ON stimulation, there was a sustained decrease in vomiting and days of hospitalizations.

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Idiopathic gastroparesis refers to gastroparesis of unknown cause, that is, not from diabetes, not from prior gastric surgery, and not related to other endocrine, neurologic, rheumatologic causes of gastroparesis. Patients with idiopathic gastroparesis often have a constellation of symptoms including nausea, vomiting, early satiety, postprandial fullness, and upper abdominal pain. Although the presentation of idiopathic gastroparesis is relatively similar to diabetic gastroparesis, abdominal pain occurs more often in idiopathic gastroparesis, whereas nausea and vomiting are more severe in diabetic gastroparesis. Treatment may employ agents used for diabetic gastroparesis and functional dyspepsia, including dietary management, prokinetics agents, antiemetic agents, and symptom modulators. Idiopathic gastroparesis significantly impacts on the quality of life of patients through its chronic symptoms of nausea, vomiting, and abdominal pain. Unfortunately, current approved treatment options do not adequately address clinical need. Development of new effective therapies for symptomatic control is needed.

Key Points

Idiopathic gastroparesis is a common form of gastroparesis, being among the three main causes of gastroparesis: diabetic, postsurgical, and idiopathic gastroparesis.

Patients with idiopathic gastroparesis has a constellation of symptoms including nausea, vomiting, early satiety, postprandial fullness, and, in some patients, upper abdominal pain.

The presentation of idiopathic gastroparesis is relatively similar to diabetic gastroparesis, although abdominal pain occurs more often in idiopathic gastroparesis, whereas nausea and vomiting are more severe in diabetic gastroparesis.

Treatment of the symptoms may employ agents used for diabetic gastroparesis and functional dyspepsia.
Idiopathic gastroparesis significantly impacts on the quality of life of patients and development of new effective therapies for symptomatic control is needed.


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1. Camilleri M, Parkman HP, Shafi MA, Abell TL, Gerson L. Clinical Guideline: Management of gastroparesis. Am J Gastroenterol. 2013;108:18–37. [PMC free article] [PubMed]
2. Parkman HP, Hasler WL, Fisher RS. American Gastroenterological Association technical review on the diagnosis and treatment of gastroparesis. Gastroenterology. 2004;127:1592–622. [PubMed]
3. Soykan I, Sivri B, Sarosiek I, Kiernan B, McCallum RW. Demography, clinical characteristics, psychological and abuse profiles, treatment, and long-term follow-up of patients with gastroparesis. Dig Dis Sci. 1998;43:2398–2404. [PubMed]
4. Knight LC, Parkman HP, Brown KL, Miller MA, Trate DM, Maurer AH, Fisher RS. Delayed gastric emptying and decreased antral contractility in normal premenopausal women compared to men. American Journal of Gastroenterology. 1997;92:968–975. [PubMed]
5. Stanghellini V, et al. Risk indicators of delayed gastric emptying of solids in patients with functional dyspepsia. Gastroenterology. 1996;110:1036–42. [PubMed]
6. Jung HK, Choung RS, Locke GR, III, et al. The incidence, prevalence, and outcomes of patients with gastroparesis in Olmsted County, Minnesota, from 1996 to 2006. Gastroenterology. 2009;136:1225–1233. [PMC free article] [PubMed]
7. Rey E, Choung RS, Schleck CD, et al. Prevalence of hidden gastroparesis in the community: the gastroparesis “iceberg” J Neurogastroenterol Motil. 2012;18:34–42. [PMC free article] [PubMed]
8. Cherian D, Sachdeva P, Fisher RS, Parkman HP. Abdominal pain is a frequent symptom of gastroparesis. Clin Gastroenterol Hepatol. 2010;8:676–681. [PubMed]
9. Cherian D, Parkman HP. Nausea and vomiting in diabetic and idiopathic gastroparesis. Neurogastroenterol Motil. 2012;24:217–22. [PubMed]
10. Tack J, Talley NJ, Camilleri M, Holtmann G, Hu P, Malagelada JR, Stanghellini V. Functional gastroduodenal disorders. Gastroenterology. 2006;130:1466–79. [PubMed]
11. Abell TL, Adams KA, Boles RG, Bousvaros A, Chong SKF, Fleisher DR, Hasler WL, Hyman PE, Issenman RM, Li BUK, Linder SL, Mayer EA, McCallum RW, Olden K, Parkman HP, Rudolph CD, Taché Y, Tarbell S, Vakil N. Cyclic Vomiting Syndrome in Adults. Neurogastroenterology and Motility. 2008;20:269–284. [PubMed]
12. Revicki DA, Rentz AM, Dubois D, et al. Development and validation of a patient-assessed gastroparesis symptom severity measure: the Gastroparesis Cardinal Symptom Index. Aliment Pharmacol Ther. 2003;18:141–150. [PubMed]
13. Rentz AM, Kahrilas P, Stanghellini V, et al. Development and psychometric evaluation of the patient assessment of upper gastrointestinal symptom severity index (PAGI-SYM) in patients with upper gastrointestinal disorders. Qual Life Res. 2004;13:1737–49. [PubMed]
14. Revicki DA, Camilleri M, Kuo B, et al. Development and content validity of a gastroparesis cardinal symptom index daily diary. Aliment Pharmacol Ther. 2009;30:670–680. [PubMed]
15. Horowitz M, Maddox AF, Wishart JM, Harding PE, Chatterton BE, Shearman DJ. Relationships between oesophageal transit and solid and liquid gastric emptying in diabetes mellitus. Eur J Nucl Med. 1991;18:229–234. [PubMed]
16. Pasricha PJ, Colvin R, Yates K, et al. Characteristics of patients with chronic unexplained nausea and vomiting and normal gastric emptying. Clin Gastroenterol Hepatol. 2011;9:567–576. e1–4. [PMC free article] [PubMed]
17. Pathikonda M, Sachdeva P, Malhotra N, Fisher RS, Maurer AH, Parkman HP. Gastric emptying scintigraphy: is four hours necessary? J Clin Gastroenterol. 2012;46:209–15. [PubMed]
18. Cassilly DW, Wang YR, Friedenberg FK, Nelson DB, Maurer AH, Parkman HP. Symptoms of gastroparesis: use of the gastroparesis cardinal symptom index in symptomatic patients referred for gastric emptying scintigraphy. Digestion. 2008;78:144–51. [PubMed]
19. Homko CJ, Zamora LC, Boden G, Parkman HP. Body Weight in Patients with Idiopathic Gastroparesis: Roles of Symptoms, Caloric Intake, Physical Activity and Body Metabolism. Neurogastroenterology and Motility. 2014;26:283–289. [PubMed]
20. Parkman HP, Yates K, Hasler WL, et al. Clinical features of idiopathic gastroparesis vary with sex, body mass, symptom onset, delay in gastric emptying, and gastroparesis severity. Gastroenterology. 2011;140:101–115. [PMC free article] [PubMed]
21. Parkman HP, Yates K, Hasler WL, Nguyen L, Pasricha PJ, Snape WJ, Farrugia G, Koch KL, Calles J, Abell TL, McCallum RW, Lee L, Unalp-Arida A, Tonascia J, Hamilton F National Institute of Diabetes and Digestive and Kidney Diseases Gastroparesis Clinical Research Consortium. Similarities and differences between diabetic and idiopathic gastroparesis. Clin Gastroenterol Hepatol. 2011;9:1056–64. [PMC free article] [PubMed]
22. Hasler WL, Wilson LA, Parkman HP, Koch KL, Abell TL, Nguyen L, Pasricha PJ, Snape WJ, McCallum RW, Sarosiek I, Farrugia G, Calles J, Lee L, Tonascia J, Unalp-Arida A, Hamilton F. Factors related to abdominal pain in gastroparesis: contrast to patients with predominant nausea and vomiting. Neurogastroenterol Motil. 2013;25:427–38. [PMC free article] [PubMed]
23. Hasler WL, Wilson LA, Parkman HP, et al. Bloating in gastroparesis: severity, impact, and associated factors. Am J Gastroenterol. 2011;106:1492–1502. [PMC free article] [PubMed]
24. Parkman HP, Yates K, Hasler WL, Nguyen L, Pasricha PJ, Snape WJ, Farrugia G, Koch KL, Calles J, Abell TL, Sarosiek I, McCallum RW, Lee L, Unalp-Arida A, Tonascia J, Hamilton F. Cholecystectomy and clinical presentations of gastroparesis. Dig Dis Sci. 2013;58:1062–73. [PMC free article] [PubMed]
25. Bityutskiy LP1, Soykan I, McCallum RW. Viral gastroparesis: a subgroup of idiopathic gastroparesis--clinical characteristics and long-term outcomes. Am J Gastroenterol. 1997;92:1501–4. [PubMed]
26. Harberson J, Thomas R, Harbison S, Parkman HP. Gastric neuromuscluar pathology of gastroparesis: analysis of full-thickness antral biopsies. Dig Dis Sci. 2010;55:359–370. [PubMed]
27. Grover M, Farrugia G, Lurken MS, Bernard CE, Faussone-Pellegrini MS, Smyrk TC, Parkman HP, Abell TL, Snape WJ, Hasler WL, Ünalp-Arida A, Nguyen L, Koch KL, Calles J, Lee L, Tonascia J, Hamilton FA, Pasricha PJ NIDDK Gastroparesis Clinical Research Consortium. Cellular Changes in Diabetic and Idiopathic Gastroparesis. Gastroenterology. 2011;140:1575–1585. [PMC free article] [PubMed]
28. Grover M, Bernard CE, Pasricha PJ, Lurken MS, Faussone-Pellegrini MS, Smyrk TC, Parkman HP, Abell TL, Snape WJ, Hasler WL, McCallum RW, Nguyen L, Koch KL, Calles J, Lee L, Tonascia J, Ünalp-Arida A, Hamilton FA, Farrugia G NIDDK Gastroparesis Clinical Research Consortium (GpCRC) Clinical-histological associations in gastroparesis: results from the Gastroparesis Clinical Research Consortium. Neurogastroenterol Motil. 2012;24:531–9. [PMC free article] [PubMed]
29. Parkman HP, Yates KP, Hasler WL, Nguyan L, Pasricha PJ, Snape WJ, Farrugia G, Calles J, Koch KL, Abell TL, McCallum RW, Lee L, Unalp-Arida A, Tonascia J, Hamilton F Dorothy Petito, Carol Rees Parrish, and Frank Duffy for the NIDDK Gastroparesis Clinical Research Consortium. Dietary Intake and Nutritional Deficiencies in Patients With Diabetic or Idiopathic Gastroparesis. Gastroenterology. 2011;141:486–98. [PMC free article] [PubMed]
30. Parkman HP, Van Natta ML, Abell TL, McCallum RW, Sarosiek I, Nguyen L, Snape WJ, Koch KL, Hasler WL, Farrugia G, Lee L, Unalp-Arida A, Tonascia J, Hamilton F, Pasricha PJ. Effect of nortriptyline on symptoms of idiopathic gastroparesis: the NORIG randomized clinical trial. JAMA. 2013;310:2640–9. [PMC free article] [PubMed]
31. Locke GR, Bouras EP, Howden CW, et al. The NIH Functional Dyspepsia Treatment Trial (FDTT) Gastroenterology. 2013;145:S145. (abstract)
32. Abell T, McCallum R, Hocking M, Koch K, Abrahamsson H, Leblanc I, Lindberg G, Konturek J, Nowak T, Quigley EM, Tougas G, Starkebaum W. Gastric electrical stimulation for medically refractory gastroparesis. Gastroenterology. 2003;125:421–8. [PubMed]
33. Maranki JL, Lytes V, Meilahn JE, Harbison S, Friedenberg FK, Fisher RS, Parkman HP. Predictive factors for clinical improvement with Enterra gastric electric stimulation treatment for refractory gastroparesis. Dig Dis Sci. 2008;53:2072–8. [PMC free article] [PubMed]
34. McCallum RW, Sarosiek I, Parkman HP, Snape W, Brody F, Wo J, Nowak T. Gastric electrical stimulation with Enterra therapy improves symptoms of idiopathic gastroparesis. Neurogastroenterol Motil. 2013;25:815–821. [PMC free article] [PubMed]"

Source: Imgur (Digestive Health Center for both images)

I found a wonderful slide show, by Lazoi Lifecare Private Limited, which explains what can cause Gastroparesis:

According to the Cleveland Clinic,
"A look at what causes gastroparesis

The primary cause of gastroparesis is damage to or dysfunction of peripheral nerves and muscles.

In diabetic patients, Dr. Cline says, it appears as more of a neuropathy-based disease associated with damaged nerves. In patients who don’t have diabetes, it seems more muscular-based: The nerve endings are all right, but the muscles are not responding, he says.

In addition to diabetes, other sources of gastroparesis include:

Lingering post-viral effects — You get a virus, but the nausea and vomiting from the virus don’t go away after the virus is gone.'Some of those cases will resolve, and we just have to wait and watch,' Dr. Cline says. 'But a lot of times it doesn’t resolve, so we have to continue to treat the patients.'

Connective tissue diseases — Gastroparesis may plague patients who have diseases such as multiple sclerosis or muscular dystrophy.

Side effects from medication — Probably the most difficult group to treat, narcotic pain medicines and other drugs slow a patient’s intestinal motility, Dr. Cline says. 'That can be very hard to treat, because the medications often override what we prescribe to treat the gastroparesis.'

Post-surgical effects — Some patients develop gastroparesis after the vagus nerve is damaged or trapped during a gastrointestinal surgical procedure.

A difficult disease to treat

Treatment sometimes begins with adjustments to diet and medication. If those approaches don’t work, surgical treatments are the next steps:

Feeding tube — Because gastroparesis impairs proper nutrition, surgeons can insert a feeding tube through the patient’s nose that bypasses the stomach. Or a surgeon may place what is known as a J tube directly into the patient’s small bowel for feeding.If these don’t work, total patient nutrition (TPN) is the next step. The patient is fed through an IV.

Gastric pacemaker — A surgeon also may use a minimally invasive laparoscopic procedure to implant a gastric pacemaker to treat this chronic digestive condition.The small device employs gentle electrical impulses to stimulate the stomach’s muscles to perform their usual functions. 'These impulses help move the stomach’s contents through the digestive tract and bring the patient relief from symptoms. We’re moving towards not really curing gastroparesis — because we really don’t know how to reverse the neuropathies yet — but fixing it as best we can,' says Dr. Cline. 'So patients and their families need to push for the diagnostic tests that we can do, because the earlier it’s diagnosed, the easier it is to treat.'

Source: Imgur

Treating Psychological Concerns

A neuropsychiatric specialist is sometimes called in to address mental health concerns that can accompany this chronic disease.

'If you wake up sick every day and vomiting all the time, this disease can quickly move from a purely physical one to a psychiatric one, so we treat the possible components of depression, anxiety, pain and so on, too,' Dr. Cline says.

I am currently working on an article about the different feeding tubes and going into researched detail about all of them, which will be ready soon. I wanted to do some research into them, because I know most of the questions I get are about feeding tubes. I, personally, do not have a feeding tube yet, but I am going to ask my doctor about treatment options because I do vomit a lot. While I do not think it's all psychological, I do think anxiety makes it worse. How could you not be anxious knowing you are in a vomiting cycle?

If you were told recently that you need one, I will try to get it ready faster, so that you can look over it. However, it's always good to do your own research as well, and really think about what questions to write down that you can ask the doctor.

I hope this will help for now:

Source: Located on Image


Friday, October 19, 2018

Request for Gastroparesis Progressional Timelines, GP Stories of Hope, and ER Stories

Request for Progressional Timelines

In May of 2013, I asked you guys to send me progressional timelines, which some of you did. First, let me explain what it is.

A progressional timeline that I'm looking for includes sequential years for - what happened right before you got sick, when you got sick, doctors visits and what they told you, any pain specialists, testings, test results, and your symptoms when you first got sick and symptoms before and now. Also, what do you think caused it? Include that in your timeline, too.

In addition to that, please write the dates for when you discovered other medical conditions before and after Gastroparesis. Please include whether you still have your gallbladder and/or appendix. If you no longer have your gallbladder and/or appendix, please put the date/year that you had it/them taken out.

Were you diagnosed with Gastroparesis after your gallbladder was removed? Where you diagnosed after your appendix was removed? When were you diagnosed with EDS or Dysautonomia or both? Do you have all three, including Gastroparesis? Have you been diagnosed with more autoimmune illnesses once you were diagnosed with the first one? Do you have lupus or any other autoimmune illnesses? Please include those in your timeline, too.

I want to compare this to other people's progressive timelines. My goal is to find a common link between all of us and our Gastroparesis and maybe it might shed some light on why we are diagnosed with other chronic illnesses. I know it will not be exactly scientific, but it IS a start and everyone has to start somewhere.

Additionally, I can post results anonymously. If you wish to remain anonymous, just please let me know in the email that you send. I will ALWAYS respect your privacy.

Here is an example of a progressional time line that was sent to me:

Source: Withheld for privacy but this is what I am looking for.


Also, I wasn't trying to yell, but I wanted that to stand out since a medical researcher has gotten wind of the project. Keep in mind that when I hand over my research to her, names will be omitted but it could be a game changer for GP since this has never been done before.

I would like to receive a variety of samples - Idiopathic GPers, Diabetic GPers, Pediatric GPers, and Newly Diagnosed GPers. I want a variety of data to work with. So, if you think that you're not important because you're new to GP, you'd be wrong. I would also like to include the same with those with Ehlers Danlos Syndrome and Dystonia<.

Also, please include your age, for data grouping, and if you want to include a short bio, you can do that aww wool Please also include your name and contact information in case I need to follow up with you in depth with your timeline for any questions/concerns.

Also, if you can't remember dates, you can approximate or just write out your GP/DTP/Dysautonomia/EDS medical history. I can work with that, too. Excel might be the easiest way to put your information down.

Thanks again for participating in this research project for progressional timelines.

Source: Unknown

Emergency Room Stories Request

From my website EmilysStomach:

I am also collecting Emergency Room (ER) stories from people who have Gastroparesis (and/or any other invisible, chronic illness) because I want people to be aware of how we are treated when we go to the Emergency Room.

I feel like these stories will bring more awareness to what we go through as people who are battling chronic, invisible illnesses. I feel like the way we are treated is unfair and not right.

Doctors took an oath to help others and so what if the people coming in are drug addicts? Drug addicts can't have medical emergencies? They shouldn't judge but help instead of dismissing us.

"The Hippocratic Oath is as follows,

"I swear to fulfill, to the best of my ability and judgment, this covenant:

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

I will not be ashamed to say 'I know not,' nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

I will prevent disease whenever I can, for prevention is preferable to cure.

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help."

If you would like to share your ER story/stories with me, please email them to me:

One of my friends went to the Emergency Room last week, they dismissed her as a drug addict, and so she went home and committed suicide because she was tired of the medical system failing her.

If you are thinking about suicide and/or suicidal thoughts, PLEASE call your doctor! You are NOT alone!

Please see my blog article here, about Suicide and Chronic Illness:


These are why your stories are so important - "Stories of Hope" or your "Emergency Room Stories." You may just save a life and you might not know it.

This "drug seeking" stigma has got to stop.

My neighbor is a nurse at an Emergency Room, by where I live. She told me that Gastroparesis was not real, and the people who came into the ER where she worked who claimed had Gastroparesis, only wanted pain medicine. I wanted to tell her that it would have been a lot easier for me to buy drugs off of the street than to spend thousands at an Emergency Room, and then being poked and prodded one hundred times! Additionally, when you are THAT sick to go to the Emergency Room, you should NOT have to fight for basic healthcare.

I have three different tests that prove I have Gastroparesis, and I cannot make those results up. I am not sure if doctors or nurses do continuing education, but more and more people are being diagnosed with Gastroparesis and other invisible illnesses.

The Hippocratic Oath states,

"I swear to fulfill, to the best of my ability and judgment, this covenant:

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

I will not be ashamed to say 'I know not,' nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

I will prevent disease whenever I can, for prevention is preferable to cure.

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help."

I do not see anything in there about judging patients and refusing to help them. What is I was a full blown medical addict? What if I was having an honest emergency and needed help? Would I have been judged and sent home to die?

If you would like more information about what is listed here, or if you want to share my blog entry with what is listed here as well, my blog address is:

One of my GP friends had that happen (she was not a drug addict though) to her. She went to the Emergency Room where they treated her like a "drug seeker." She was having problems breathing I think, and so the doctor gave her a breathing treatment and sent her on her way. She died at home later that night because her lungs filled up with fluid. The doctor didn't do an x-ray, keep her overnight or anything that could have saved her life. I still cry.

Okay first thanks to all of you who have submitted your ER stories! They have been collected and will be put into slides but have already been listed to the website, in collaboration with my friend who runs that site and they will also be listed in my blog, and my website.

Now for my next request. I want as many faces and personal stories of who you are, when you were diagnosed, how your disease and treatment has affected your life. You can use your first name and last initial or I can make up a name for you (just let me know), but listing your state would be amazing if you feel comfortable with that.

You can email it to me at:

And/or you can post it in the group information below:

Together we will make a difference! Again, once the presentation is complete, it will be made available to anyone who would like to advocate to your local hospitals and doctors.

Sunday, August 26, 2018

Stories of Hope From Gastroparesis Warriors

I know there is a lot of negativity involved when you have a chronic illness. It is hard to push negative thoughts out of your head when you cannot go out to eat with friends like you used to, you cannot go to see the latest movies, and you are basically stuck at home, sick all day. It requires a lot of energy from people who are suffering from Gastroparesis to even walk across the room, some days. In the process of coming to terms with an illness like this, Gastroparesis Warriors tend to lose friends, either because the friends do not believe them or because they are too sick to go and hang out, like I mentioned above. Gastroparesis is a very isolating illness, and it hurts us not to be able to do the stuff we once did.

I started having a monthly movie night at my house, scheduled on every second Saturday of the month, so my friends can come over and we can watch movies, play board or card games, and just hang out. It means a lot to me that my friends are willing to do that. I thought I would mention it in here in case someone would like to do something similar. I may not be able to go out all of the time, but it's nice to have people who care about you enough to come over and spend time with you. I wanted to turn the negative into a positive.

Source:Wisdom Quotes and Stories

I wanted to share some Stories of Hope for you, from other Gastroparesis Warriors, in case you are feeling down.

My friend Jen writes,

"I was a very healthy 38 year old woman when I got sick suddenly in March 2017. I fainted a few times and broke my nose badly and suffered a severe concussion. I had surgery a few weeks later to fix my nose and the following day felt even worse. It was as if over night I could not pass gas, could not have a bowel movement, could not eat solid food or drink anything except Coke. I thought it was related to my narcotic painkillers I was prescribed after surgery. However, it got worse over the next few days and being concerned that I had a ruptured appendix, I went to the ER. They did a CT scan and found a large ruptured ovarian cyst. They gave me more pain meds and sent me home. It didn't get better, only worse. Two weeks later, I went back to the ER suspecting a small bowel obstruction. My CT was negative and they referred me to a GI doctor. I ended up having a upper/lower endoscopy, abdominal ultrasounds and a HIDA scan. At this point, being an RN myself, I suspected I had gastroparesis. I pushed for a GES, which showed more than 80 percent of my 'meal' still in my stomach at 4 hours - severe GP.

At this point, I still couldn't eat food and could only drink Coke and sips of Ensure/Boost. I was getting IV fluids and IV zofran as an outpatient 3-5 times per week. In early June I got an implanted port and home health care, which helped a great deal. I was on 2L D5NS a day plus 8 mg IV zofran every 8 hours. In late July, I started Domperidone. After a couple of weeks, I found I could slowly eat a few "safe" foods and my oral intake improved.

By the end of October, I was off my IV fluids/meds and eating a little bit better. I managed to put weight back on after losing so much. I had been off work as a labor and delivery nurse on disability since March and in late December went back on a very part time basis, slowly increasing my hours over the following few months.

It is now June 2018 and I am doing well, all things considered. I can eat a small amount of my 'safe' foods and the only liquid I can drink remains Coke (even water makes me vomit). I am at a healthy weight for me finally. I am off the domperidone and only access my port once a month to flush it with heparin (off all IV fluids/meds). I am hoping to get my port out later this summer if I continue to do well. I receive vitamin B-12 injections every six weeks and take prescription vitamin D supplements as nutritionally I'm still recovering from severe malnutrition. I still battle some pretty severe fatigue and ended up having to reduce my hours at work from full time to part time to accommodate my lower energy levels.

I am so thankful that I (narrowly) avoided a g-/j- tube and have managed to improve over the last year on my own. My GP was considered idiopathic, meaning they don't know how or why I developed it. They suspect it was either due to damage to the vagus nerve in my repeated fainting episodes or that it was viral in natural. Given that it's improved, I'm leaning toward viral, but we won't ever know for sure.

I received SO much amazing support in the Facebook groups I belong to over the last year and while I haven't been posting in them much lately, I think about all of those people very often. I want others to read my story and have some hope. I know when I was really sick, I had very little hope and it was stories like this that made me think some sort of recovery might be possible for me. I continue to watch many of my friends struggle with GP and my heart goes out to them."

She also included her before picture:

Here is Jen's after picture:

I want to thank her for being brave enough to share her story of hope.

The stories below were sent to me a while ago to include on my website, but I wanted to put them in my blog too because these people deserve to be heard. Plus, you never know, you might relate to some of these stories or they may help you.

The first story is about my friend Kerri, whom I lost this year. It hurts me to talk about but I wanted to put it in my category of "Stories of Hope" because I think she would have wanted that. She would want people to take a positive message from her story and to keep fighting. I believe she would want her story shared so that the same thing does not happen to someone else. Therefore, I present to you, Kerri's story.

Taken from GP STORIES.

Here is Kerri's story:

"My good friend Kerri passed away day before yesterday (in March). She was only 40 years old. She used study Human Development and Family Studies at Colorado State University, with degrees for the Deaf and Blind to help them. I feel like I've lost too many friends over the year.

This is going to be long but a mutual friend wrote this and I thought it summed up how I feel:

'She didn't have to die yet, the state of medical care in this country killed her. Kerri and I originally met on a service dog forum many years ago. She was an amazingly talented person as well as selfless and with a childlike innocence and sincerity.

She trained her own seeing eye dog!

Those in the SD (seeing dog) community understand how difficult and special that is. When she needed more mobility assistance she was unable to get another guide from an organization.

Kerri's medical care was complex due to the multiple disorders she had and especially by her blindness. She was dependent upon a form of IV nutrition called TPN to live and many IV medications. Being blind obviously complicated this and she relied on a home health nurse to come daily and set things up for her to be able to use safely and continue to live independently. She struggled with frequent hospitalizations due to life threatening infections. At her last one it was determined she was no longer able to live at home alone. She would need to find a skilled nursing home to be discharged from the hospital.

That discharge never happened, after being turned away from 51 different skilled nursing homes. They refused to take her in due to her TPN requirements. Insurance didn't allow for any further assistance in her home than she was already receiving.

Kerri had many friends both online and in her assisted living apartment complex. She continued to work from home for jamberry until not too long ago. In her younger years she was a competitive ice skater despite the blindness. Had also recently been correctly dx (diagnosed) with conditions that explained symptoms and complications she'd experienced for MANY years and started treatment (it takes way too long to receive correct diagnosis). Now we will never know how much function she could have gained back. Especially, the improvement of the immune system to prevent the frequent life threatening infections.

Due to the inability to find medical care in the form of a safe place to live, she made the only choice she had, which was to die. It didn't have to be this way. She decided upon the next infection she would not treat it. That was taking too long, and she began to discontinue treatments that sustain life such as the TPN and IV hydration (she was completely unable to use her gastrointestinal tract). She has now passed on.

We need to improve the medical options available for complex patients. We need to improve insurance so people can receive the care they need. We need to stop the incentives for doctors to refuse care (for fear of litigation and punishment from the government. Today in medicine it's safer for doctors to walk away from complex patients rather than open themselves up to the risk, something I've experienced myself as well). We need to incentivize medical professionals to provide the best treatment they're able.

We need to improve.

We need to change.

We need to save the Kerri's of the world, allow them to live as long as possible to contribute to the world.

No one should die simply because people weren't willing to TRY. She didn't die because her condition got worse and not because there were no treatments available. She didn't die waiting for a medical breakthrough (though one that could have cured some of her conditions instead of maintaining them is a future goal).

She died simply because no one was willing to provide what she needed and was available. She had so much more to give the world. She is survived by family, including her amazing Labrador guide and mobility assistance service dog Sophie as well as her daschund Mandy, and many friends.'"

Kerri in the hospital via Facebook.

Trish's Story of Hope:

"Trish’s Story of Hope

Written By: Trish

"My name is Trish Rhodes, and one day back in April 2011, I woke up one day with nausea and constipation. So went to work and it was awful the whole day. That weekend I was so sick, I had started vomiting, major stomach pains and slept most of that weekend. So I went to the doctor that following week, then the tests began. I did a CT scan of abdomen area, MRI of bile ducts, EGD, MRCP, many blood tests. All tests came back normal. This was hard to take so I went back to my GI doctor and it seemed like he had given up on me. So I went to my PCP and told him how I felt about the GI doctor and previously I had done some research and came across the GES test. So got that scheduled and it came back abnormal. Finally I knew an answer. But I sure didn't know the extent of this awful condition. My GI doctor was no help so I fired him and got referred to another one 2 hours away.

I would say about a year later I went to this 2nd GI doctor and I like him, he spent the time to talk to me about how I was feeling, what I was eating, my weight, etc etc. Then he wanted more tests. Blood tests, Colonscopy, another GES. Everything was good besides the GES. So that was hard hearing that information again for some reason. So then I dont hear from this doctor for almost a year and finally schedule another appointment which I think are pointless because these doctors are no help whatsoever! Now he is all concerned about my weight, which I weighed the exact same as the 1st appointment. Another depressing appointment. He did put me on some pancreatic enzymes because I had pancreatitis when I got my gallbladder out 6 months prior to these symptoms starting. It feels like they may be working but not sure. Also they have no idea on why I got this.

So I decided to go to a chiropractor. My initial thought was to try acupuncture but my insurance doesn't cover this. So I went to appointment anyways and I feel almost 75% better. I still have my moments and have a lot of stomach pain and nausea. I have to take Tramadol for the pain and it takes care of it for the most part unless I am having a bad flare up. Those usually lasts weeks. But I feel like something has changed since going to this chiropractor. I am very limited on what I eat. Hardly ever eat out and when I do its really hard, lots of anxiety I may eat something wrong or whatever. I also have a 4 year old daughter so I have no time to be down. She just won't allow it. She has Chiari Malformation (rare brain disorder) so she needs me to be healthy and strong for her on the days she has headaches, neck pains, leg or foot pains. I am 5ft and weigh 94 lbs. So I am very underweight. But I still want there to be more research. I do take Domperidone and there needs to be more testing on that drug or it be available in the United States because it works for me. It definitely takes away my nausea. Please help us find a cure!!! There are so many people that suffer from stomach conditions and we all need help!"

Brie and Trish.

Here is Leanne's Story of Hope:

"Leanne’s Story of Hope

Written By: Leanne

Hi Everyone, I was asked this past Sunday to write a short bio of myself, and to explain why I think it's important to fight gastroparesis.

I'm 42 years old and live in a small town called Tillsonburg in Ontario, Canada. I have a wonderful boyfriend, we've been together a for a couple of years, and we have two cats and a dog. I also have amazing parents who have advocated and fought for me every step of the way.

I've had GP for 30 years, but went misdiagnosed for the first 20 years. I kind of consider myself a GP veteran with this many years under my belt, but in no way do I think that that makes me an expert. My GP symptoms began around the age of 12, after I incurred a a pretty bad back injury, spondylosis with severe degenerative disc disease and spondyloarthritis. My injury also went misdiagnosed and worsened over time. While it's been speculated that this is the contributing factor to my GP, no one is sure. I also have severe IBS.

The first 20 years were tough. Doctors, meds, tests, and lost opportunities. I ended up having to drop out of University in my 3rd year due to GP, I had hoped to get my PhD. in psychology. I learned pretty quickly that life doesn't always turn out as one hopes. For the last ten of those 20 years it was "all in my head" according to the doctors, and I often found myself in that medical paradox, asking for help from the medical community that I was at the same time constantly fighting.

At this point, I had given up. I was horribly sick, I had lost over 100 pounds (my weight has always fluctuated, I've gained and lost over 100 pounds 5 times now, with smaller fluctuations in between). My doctor refused to give me another feeding tube, because my "issues were psychological" and not medical. To be completely honest, I thought I wanted to die. I'd had enough and I had come to the realization that no one was going to help me.

There I sat, looking out the window, at my lowest point, thinking about how absolutely horrible my life had turned out to be. Then, out of the corner of my eye, I spotted a hummingbird. I watched her going about her business, going from flower to flower, doing her thing. Suddenly, I noticed something. I WAS SMILING. Here I am, at the lowest of the low and something so inconsequential as a hummingbird was able to put a smile on my face. It had brought me a moment of joy, something I had not allowed myself to experience while I wallowed in my misery. I had gotten so caught up in my fight with GP that I had forgotten to allow wonder and beauty into my life. I suddenly realized that my spirit, while beaten up and bruised, was not broken. I was and am far tougher some shitty illness.

I pulled myself up, got myself together, and started to REALLY ADVOCATE for myself. I found a specialist on my own, went in with an agenda and plan of what I wanted and what I was willing and unwilling to do. To make a long story short, my advocating made all the difference, and I was finally diagnosed soon after.

Since my diagnoses, life has been better. It's still really rough at times, as everyone with GP knows. It's very easy to allow oneself to get completely caught in the medical misery of it all. The one thing I'd like you to take from my story is, to take a moment, a breath, if you will, and allow yourself to see the wonderment and joy life has to offer, no matter how fleeting that moment may be. Those little moments are the things that make the fight worthwhile.

You'll realize that you are tougher than you think, and you just may find yourself smiling.

Much love."

This is a picture of Leanne.

This is Daniel's Story of Hope:

"Daniel’s Story of Hope

Written By: Daniel

Last night was a good night. I felt well enough after work to clear the snow from our neighbor’s driveway as well as our own. It took a long time and was heavy, wet snow (got to love New England) but I didn’t even have my usual wiped out feeling after. My son watched me with the “tractor” (snow blower) out the window and I gave him snowballs to eat, his favorite. When I was done I came inside, wrestled with my son in the living room, ate dinner with the family and watched a movie with my wife before bed. Unfortunately because I was feeling so good and having fun, I made some bad food choices.

Today was not a good day for my Gastroparesis. I woke up in the middle of the night with the usual nausea and beyond full stomach. I woke up this morning and knew it would not be a good day. I was wiped out, my nausea was terrible and I just wanted to go back to bed. But I got ready and went to work. Things only got worse from there as my nausea increased. At one point this morning I did not think I could make it through a meeting for fear of vomiting. But I pressed on.

I kept telling myself to just make it a few more minutes, to just focus on a specific task, to just calm down and keep going a little more. It reminded me of when I used to run. When I would get so tired I would say to myself, 'just make it to that next tree,' then, 'just make it to that next pole.' It’s a constant struggle, almost like a game, albeit a terrible one!

My wife and son came to visit for a minute and that made me feel a little better, emotionally if not physically. I was discouraged for sure. A great night turned into a bad day and I am tired of that. But I also felt better by trying to remember to pray when I was discouraged so that my illness would not ruin my relationships or my testimony or my joy in life. It is so easy to be consumed with being sick or with discouragement. That is a daily and ever present struggle for those of us with a chronic illness. A good night can turn into a bad day tomorrow. For some of us, we know how a good hour can lead to 10 bad hours, we never know what to expect.

My encouragement is to keep going for just one more hour, just one more task. Use those you love for support and encouragement. Above all, continue to pray that you would not be consumed with your illness. Do not let it rob you of your joy and keep pressing on!"

Source: Above, In image

Here is Jennifer's Story of Hope:

"Jennifer’s Story of Hope

Written By: Jennifer

Hi my name is Jennifer I am 45 years old. I have had stomach issues since my teenage years, starting out with what doctors said was Colitis. I always had either diarrhea or constipation, and the doctors also thought I had IBS. In 2008, the problems were just intensifying! The doctors believed my Gallbladder was causing my issues so they removed it. After the surgery, it just went downhill. The Surgeon that removed my gallbladder knew there was something else going on and he was worried but said I had to go to a GI specialist. There was nothing more he could do for me.

I found a GI specialist and when I walked into his office, he looked at all of my records and without doing any tests told me I had IBS. He gave me Reglan and sent me home. When I let him know it was getting worse and medication wasn’t working, he basically told me it was all in my head and nothing more could be done. That was in 2009, so I was done with doctors. I was beginning to believe it was in my head. I went the next few years dealing with the flare-ups and the ups and downs, and it was hell!

Then in 2011, I received the worst news that anyone could get. I had a very rare cancer that only one in a million people get (dermatofibrosarcoma protuberans). The only way to treat this is with MOHs surgery. They removed quite a big section out of my shoulder and were able to get clear margins. I will be cancer free for two years in September of this year. Yea! Needless to say, the healing was excruciating and my stomach issues were put on the back burner.

In November of 2012, I had a flare up that would not go away and it also came with new symptoms (extremely nauseated, lost weight quickly, etc.). I went to my family doctor who sent me for a EGD. It came back normal but the doctor felt he needed to do one more test which was the Gastric emptying test. I thank God he ran that test because that's when I finally got diagnosed with GP (not a good thing but at least I knew it wasn't in my head, I was not CRAZY).

I am a small person to begin with weighing at around 100 pounds and 5 foot tall. At this point I was at 92 pounds. After being diagnosed, I found a good GI doctor who put me on Reglan again. Of course it didn’t work. He told me there was nothing more he could do for me and recommended that I stick to a strict diet.

At this point, I had been on just a liquid diet due to the pain and extreme nausea and I was getting weaker and weaker. He told me that I was not a candidate for a feeding tube because I had not lost enough weight. WOW! I couldn’t believe that.

Within two weeks I was declining quickly, and becoming more and more malnourished. I was very weak and I lost more weight until I was down to 87 pounds. I called the doctor and that day. He saw me and set me up with an appointment the following week for a feeding tube.

The day I went in to get the feeding tube, it had been one week since I had seen the doctor. I found that I had lost more weight - four more pounds. I have the feeding tube now and I know it will be very helpful. It doesn't seem that way right now but I know it will.

I have to fight to live. I mean I fought cancer and I beat it! Now, I know that this disease will not go away as there is no cure but I’m a fighter! I need to fight for the ones I love and I need to show this disease that it’s not going to take me down that easily!

Some days I break down and just sob, though. This illness has taken away so much from me in such a short amount of time. But, it can't take my four wonderful daughters, my extended family, my grand kids, and my best friend of all my soul mate (my husband) away. They are my life! Bless their hearts!

This has taken such a toll on them watching me go through what we all go through with Gastroparesis. No matter how hard it gets, please know God is there with you and he will carry you when it gets too hard to walk. Please know that there are wonderful support groups that will walk every step with you! All of us GPers are family! May God bless each and every one of you!"

Source: Google Images

This is Shannon's Story of Hope for Conflict Resolution:

"Shannon R.’s Story for Conflict Resolution

Written By: Shannon R.

I know many people have issues with others who may not understand Gastroparesis and they may act horribly towards you because your outward appearance seems fine. Here’s my advice:

When you are angry with a person please try to find the solution to the problem, don't let it fester because when it does it turns into anger, and when we are angry it turns into depression. So in order to resolve our daily conflicts there are some very easy things that we can do to not carry it around with ourselves and make us sicker than what we already are.

There are some simple ways to rid us of it:

1. When we are in argument we must play the tape back and see the part that we played in this situation. We always have played a part not one of us is totally innocent.

2. When you see that you don't want to forgive that person we should pray for that person for 30 days and if that doesn't work we must pray for them even longer at times.

3. The third thing we can do is look for a good sized rock and carry it around with us to remind ourselves if this is a regret we would like to carry around with us for a long period of time or short period of time.

4. The next best thing that I really have a lot of respect for is that when we are ready to forgive that person is that we say: I forgive you, Thank You and I love you.

Number 4 will be the one that really catches a person off guard because they are not sure how to respond to it and the other party will feel pretty good about it and they might just forgive you for it."


This is Charline's Story of Hope
Written By: Charline

"Three years ago my daughter, 13 at the time, had just entered junior high. She started having terrible stomach pains. I thought it was anxiety or something was going on in school. It was neither. Her GP even thought she was exaggerating. Then the time came when I became fully vested in finding out what was wrong.

My heart hurt for her.

She was missing school and dance which she loved. Her friends didn't believe her. So after a year of research, many doctors appts, testing and changing her diet a few times we finally found out that she had Gastroparesis.

Knowing made it so much easier to deal with. FINALLY!

The specialist put her on all of this medication that I wasn't overly thrilled about. The GI Doctor also had her go to a counselor to help her deal with this. That was a brilliant move on the doctor's part.

My daughter not only figured out how to deal with this medically but also mentally. She ended up getting off most of the medicines and is now on Pro bio tics-Ginger root-and enzymes with every meal. She started putting weight on and gained her confidence back.

This will be something that she will have to deal with for possibly the rest of her life, but once you find out what works for you then stick with it. Only keep good positive people around you. Your stress level will play a major role. Stay strong and positive. I am happy to say she is doing well and I am sure you will find you path. It may take a while, but never give up. You are so worth it!"


If you have any Stories of Hope that you would like to share to be added to this article, please email me at: emilysstomach[at]