Information to Help the Newly Diagnosed and to Help Family/Friends Understand Gastroparesis

I have written a series of articles over the years but wanted to put them together, sort them, if you will, so that they would be much easier to get to. I wanted to put them all together in a post to help people find the information they may need right at the moment, so they do not have to hunt through 200 posts. All you have to do is click on the bold, capital letters to reach the articles listed below.


Information to Help Family and Friends Understand Gastroparesis (GP):

TO THE LOVED ONES OF A PERSON DEALING WITH CHRONIC PAIN. This article helps those who may never have experienced chronic pain to understand it.

A LETTER FROM A GPER TO A FRIEND/FAMILY MEMBER. This is to help friends and family understand what it's like living with Gastroparesis.

ADVICE FOR CAREGIVERS WHO WITNESS LOVED ONES SUFFERING FROM GASTROPARESIS. This article is self explanatory. It gives those who take care of GPers advice on how to handle things and what to do/what not to do. It's very helpful.

THE DIFFERENT TESTS TO DIAGNOSE GASTROPARESIS. This is an article that goes through the different tests that can be used to diagnose Gastroparesis, if someone you love is having these symptoms, please call a GI right away. The GI can preform a test or more than one of these tests to confirm the diagnosis.

WHEN TELLING SOMEONE THEY LOOK GREAT BECOMES AN INSULT. This article goes into detail on how telling someone who is chronically ill, especially with GP, that looking great can be an insult. It's a very good article.

HOW TO DEAL WITH THE SITUATION, "BUT YOU DON'T LOOK SICK!" This article goes into detail about how people who say we don't look sick, even though they might mean well, of how it does more harm than good. Some people do not realize this and think that they're being helpful, or even nice. The article goes into detail about why it's a bad thing to say.

RESOURCES TO EXPLAIN DTP/GP OR A CHRONIC ILLNESS TO FAMILY AND FRIENDS. This article goes into detail of trying to explain having Gastroparesis/DTP and/or any chronic illness to family and friends. It tries to explain it in a way that healthy people can understand, because I feel, personally, unless you've been there, it's a bit hard to understand. I wanted to try and find a way to get others to understand because I am tired of being doubted. You shouldn't have to fight your family and friends when you already fight with doctors, nurses, etc. There's just not enough energy for that.

ADVOCACY FOR PATIENTS AND FAMILY/FRIENDS OF A CHRONICALLY ILL PATIENT. This article explains how you and your family should be your advocate when navigating the healthcare system. Sometimes, we are too sick to fight for ourselves, and having someone there with you to help you makes a difference. It gives a lot of pointers on how to be your own advocate as well.

A DOCTOR'S ADVICE TO THOSE WITH A CHRONIC ILLNESS. This article will help you but I think it will also help your family and friends who do not suffer from a chronic illness to understand one.

GASTROPARESIS PATIENTS VS DRUG SEEKERS. This article explains the difference between drug seekers/addicts and people suffering from Gastroparesis and other chronic illnesses which cause pain. It helps the reader to understand the difference. People who suffer from chronic pain, whether it's from nerve damage or other reasons, constantly have to defend themselves in Emergency Rooms, to doctors, to office staff, to family members, and to friends. It's exhausting, especially when we didn't ask for a chronic illness or chronic pain.

GASTROPARESIS VS EATING DISORDERS. This article tells the difference between having an eating disorder and Gastroparesis. I have talked to a lot of GPers (people with Gastroparesis) and they have told me at one time or another, that they were accused of having an eating disorder and was refused treatment. In high school, when I was sick and before I knew what I had, I was accused of pregnancy and then an eating disorder. Some people did get gastroparesis through eating disorders as well. However, I do not think they should be punished nor should we all be punished and refused treatment because of this terrible invisible chronic illness. I am going to share some stories with you that brave women have sent me. Because, they deserve to be heard and the world needs to hear them. They won't be invisible anymore.

GASTROPARESIS VS EATING DISORDERS PART DEUX. This article compares Eating Disorders to Gastroparesis, and the differences between each but there are some similarities, so I can understand why people may be confused between the two. Hopefully, this article will help you be able to tell the difference.

A COLLECTION OF GASTROPARESIS STUDIES AND RESEARCH. This is a collection of studies and research I could find that is currently being done on Gastroparesis. We hope to get more awareness out there so more will be done.


GASTROPARESIS: THE DIFFERENT WAYS IT EFFECTS THE BODY. "There are many kinds of Gastroparesis, many faces of Gastroparesis, and because everyone is different, it is hard to diagnose and treat. I, myself, have had Gastroparesis since about 2000 after an appendix surgery but was officially diagnosed in 2012. I do vomit, but that doesn't make my Gastroparesis more than someone who does not vomit, or my Gastroparesis less than someone who may have a feeding tube. There are also people who gain weight with Gastroparesis. However, Gastroparesis is Gastroparesis. It does not matter how much you weigh, because that does not mean that you are not malnourished or that you are not vitamin deficient. The Vagus Nerve is still damaged."

Image Source: Melissa M.





Resources for the Newly Diagnosed:

FREQUENTLY ASKED QUESTIONS REGARDING GASTROPARESIS. This article contains frequently asked questions regarding gastroparesis and answers to those questions. These are questions I see a lot in groups and on my pages, so I thought I would answer them.

ADVICE FOR THE NEWLY DIAGNOSED WITH GASTROPARESIS/DTP. This article contains more resources for those who have been newly diagnosed with Gastroparesis/DTP.

YOU'VE BEEN DIAGNOSED WITH GP, NOW WHAT? This article gives resources like the Gastroparesis diet, support groups, and other important things to know about Gastroparesis.

THE GASTROPARESIS DIET & RECIPE HELP/IDEAS. This article was written to help those who have been diagnosed and need to change their dietary needs to accompany the illness that invades their digestive systems. The link to this article is definitely in the articles above, for the newly diagnosed. I have collected no just friendly Gastroparesis food recipes, but also recipes for juicing and smoothies. Unfortunately, it is trial and error for everyone, because everyone's GP is different. You just have to find what works for you. There are also support groups for people who have GP who swap recipes and help each other. Additionally, I have uploaded documents containing information about the Gastroparesis diet that the Mayo Clinic gave me.

GASTROPARESIS' EFFECTS ON DENTAL HEALTH. This article goes into what causes dental issues for Gastroparesis warriors. It explores what causes tooth decay, because many GPers lose their teeth, break teeth, and have horrible cavities. There are a variety of factors from vomiting up stomach acid to stripped enamel.

GASTROPARESIS; THE DIFFERENT WAY IT EFFECTS THE BODY. "There are many kinds of Gastroparesis, many faces of Gastroparesis, and because everyone is different, it is hard to diagnose and treat. I, myself, have had Gastroparesis since about 2000 after an appendix surgery but was officially diagnosed in 2012. I do vomit, but that doesn't make my Gastroparesis more than someone who does not vomit, or my Gastroparesis less than someone who may have a feeding tube. There are also people who gain weight with Gastroparesis. However, Gastroparesis is Gastroparesis. It does not matter how much you weigh, because that does not mean that you are not malnourished or that you are not vitamin deficient. The Vagus Nerve is still damaged." This article takes a loot into what Gastroparesis actually is and what causes it before it goes in depth about the different types of Gastroparesis.

THE MANY CAUSES OF GASTROPARESIS & TREATMENT OPTIONS. Disclaimer: There is NO cure for gastroparesis. A lot of people and groups will try to sell things or involve you in a ponzi scheme to sell "cures" to desperate people. If there was a cure, it would be readily available and publicized. I can promise doctors would have given the cure to friends of mine whom have passed. 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. You should always consult your doctor if you have questions/concerns. However, if you feel like the advice is not right for you, go in for a second opinion somewhere else. You know your body better than anyone else does.

A COLLECTION OF GASTROPARESIS MEDICAL STUDIES. I like to stay on top of research into Gastroparesis, and that includes medical studies and clinical trials. I like to see how they are faring so that I can see if there's better treatment options on the horizon. I wanted to share my findings with anyone who reads my blog. I believe in hope. I know that sounds odd, but I do. I think hope is powerful. I hold onto hope for better treatments to help millions of people. I know one day we will get there.

GASTROPARESIS MEDICAL STUDIES UPDATE; JOIN AND/OR KEEP UP WITH THE CLINICAL TRIALS.. There are clinical trials being held by The National Institute of Diabetes, Digestive, and Kidney Diseases. There are also other studies that show to be promising regarding medication to help with the cramps, among other things, of Gastroparesis. It all looks really hopeful.

HOW TO OBTAIN DOMPERIDONE. Unfortunately, it is not really prescribed here anymore. So, I uploaded the printout that the DEA has on Domperidone and more information about it.

PROGRESSIONAL TIMELINE OF GASTROPARESIS/EDS/DYSAUTONOMIA. This is a request for timelines for those who have been diagnosed with GP/DTP, EDS, and Dysautonomia. I want to do some research and compare timelines between people to see if I can spot a pattern. Hopefully, I can compile enough research to give it to a doctor/researcher who can take the idea and go from there. I thought it would be an interesting project because I know most of my friends diagnosed with GP suffer from EDS and Dysautonomia too. I am curious to see if there's a connection there but I need a large sample size to see if there is.

THE GASTRIC STIMULATOR PART I - PERSONAL STORIES FROM REAL PEOPLE WHO HAVE HAD THE SURGERY. This article contains personal stories from those who have Gastroparesis and have gotten the gastric stimulator/pacemaker surgery to help them eat. On a side note, there is a group that is composed of people who have had the surgery and are able to answer any questions you might have, and it's important to do your own research and ask questions before a major surgery like this. However, keep in mind that everyone is different when it comes to Gastroparesis. The group is listed below in the Resources article and this article.

INFORMATION ON THE VAGUS NERVE. This article goes into detail about the vagus nerve, what it controls and where it runs through your body. The article also has links to the "Vagus Nerve Stimulator" and "The Brain in Your Gut."

THE GASTRIC BYPASS, THE SLEEVE, AND GP. This article goes into detail about the gastric bypass and sleeve, along with personal stories of those with gastroparesis who had these surgeries. I did a year's worth of research into the gastric bypass, because my GI kept insisting that it would help me. However, I decided it was not for me after speaking to GP friends who had it done, and the they experienced horrifying issues. I did upload all of the paperwork that I was asked to fill out, so you understand the procedure you are committing to.

AN NJ TUBE STORY BY ALLEY. This article is written by a guest blogger and my friend, Alley. She writes about what it's like living with an NJ tube.

GP SURVIVAL COMMANDMENTS. This article was one I wrote after I polled people in support groups on what they wished they had been told these things (the things listed in the blog article) when they were first diagnosed.

GASTROPARESIS: KNOW THE FACTORS FOR THIS MYSTERIOUS STOMACH CONDITION. This article goes on to explain Gastroparesis, "As diabetes cases skyrocket, another condition called gastroparesis is rapidly becoming a more common diagnosis. It reduces the ability of the stomach to empty its contents but does not involve a blockage. Nausea, vomiting, loss of appetite, bloating and chronic abdominal pain are the hallmark symptoms, according to gastroenterologist Michael Cline, DO."

RELAXING AND BREATHING TECHNIQUES FROM THE MAYO CLINIC. I uploaded pages that the Mayo Clinic gave me to teach me how to relax my breathing. It helps during panic attacks but it also helps after you vomit, because it helps to regulate your breathing.

GASTROPARESIS RESOURCES & ONLINE GROUPS. This is a link to all kinds of resources for Gastroparesis, including support groups, blogs, Pinterests, etc. A great article to help you, and it is constantly updated with new groups and information about Gastroparesis.

THE BRAIN IN YOUR GUT. The stomach makes most of your serotonin. So, what happens when you have Gastroparesis and your motility is decreased?








If you are having issues describing Gastroparesis to someone else, this might help as well:

Source: unknown



THE IMPACT OF VITAMIN DEFICIENCIES. This article dives into the different vitamin deficiencies and the symptoms for each. If you notice any of these symptoms, please call your doctor immediately. It is easy for people like us to have low vitamins because we cannot eat like "normal" people.

INFORMATION ABOUT MALNUTRITION. This article explores the symptoms of malnutrition, what causes it, how it effects us, and the treatment for it. This, and vitamin deficiencies, are VERY serious! Please call your doctor if you have the issues outlined in this article.

POOP - WHAT THE DIFFERENT COLORS AND SMELLS MEAN. A lot of people are embarrassed to ask this question when something isn't right. However, this article contains charts and sources to help you figure out what is going on. It is NOT a substitution for medical advice from your doctor. You should always call your doctor if you feel like something is wrong or not like it should be. But, for those of you who have questions, this article will help you and maybe even help you write down questions to take with you to the doctor.

DUMPING SYNDROME. This is an article explaining dumping syndrome; What it is, what causes it, and goes into details about it. I have experienced it first hand, when my stomach wants to empty all at once because the bile doesn't have a lot of places to go. It has cited sources, like all of my articles, so that you can read from the source and write down any questions you may have for the doctor.

INSPIRATION AND HOW TO KEEP YOUR MARRIAGE STRONG DURING A CHRONIC ILLNESS. Marriage is hard enough as it is without adding a chronic illness into the mix. However, life happens. This article will give you some pointers on how to keep your marriage strong when your chronically sick.

BRAIN FOG: WHAT IT IS,CAUSES, SYMPTOMS, AND TREATMENTS. "Whenever someone experiences forgetfulness, feels utterly confused while tying up thoughts, or has disorganized thinking, or has inability to focus or is hard pressed to put their thoughts into words, they are experiencing brain fog."

HOW GP/DTP - PAIN EMOTIONALLY AND PHYSICALLY. This article describes and gives suggestions on how to cope with pain related to Gastroparesis and Digestive Tract Paralysis (DTP). It was compiled from suggestions given by other warriors who are fighting the same fight.

HOW TO STAY MOTIVATED. It is really easy to lose pleasure in things you once loved, and it's hard to look on the bright side when you're constantly sick. However, this article will give some ideas about keeping motivated, even during the worst of times. You're NOT alone!

HOW TO STAY POSITIVE, ESPECIALLY IN DIFFICULT SITUATIONS. This article is a lot like the article above. It gives ideas and ways to stay positive, even when the world seems so bleak because you're constantly sick.

FEELING GOOD WHEN YOU'RE FEELING DOWN. This article gives pointers on how to stay positive and feel good when you become depressed. We all get really sad every now and then, especially when we're overwhelmed and tired. This article gives some tips that might help. But, if you feel really down all of the time, you need to talk to your doctor.

HANDLING HOLIDAYS WITH A CHRONIC ILLNESS. The holidays are coming up and this article gives tips on how to get through the holidays with a chronic illness like Gastroparesis, because almost or all of our holidays are centered around food.

INFORMATION ABOUT GASTROPARESIS AND TRAVELING WITH GP. This article will give you information on what Gastroparesis is, what causes it, and traveling information. I obtained in depth handouts from the Mayo Clinic and uploaded them for everyone. The article has information from Mayo on how to travel with Gastroparesis, and a link to an article on traveling with a feeding tube. It also has a link to the Gastroparesis diet.

SOCIALIZING WITH A CHRONIC ILLNESS. It is extremely hard to socialize with a chronic illness, but it can be done thanks to modern technology! "Socializing is hard enough when you are a healthy, human being. You could be shy or nervous to talk to others. However, with a chronic, invisible illness, it's even harder. Imagine having that nervousness and shyness leading to vomiting, intestinal spasms, bloating, and many other things but the main culprit is fatigue." To find out how to get around that, you'll have to read the article!

HOW TO FEEL SEXY OR HAVE SEX WITH A CHRONIC ILLNESS. I've gotten this question a few times but people are too embarrassed to ask it, usually. I decided to write an article on it that might help.

PREGNANCY AND GASTROPARESIS. I've gotten this question a lot too, so I consulted people who have been pregnant with gp, and wrote an article to help those who may be thinking of getting pregnant but worried about their GP.

THE GRIEVING PROCESS FOR A CHRONIC ILLNESS AND HOW TO OVERCOME IT. People go through a mourning process once they are diagnosed with a chronic illness because the things they could do before, they might not be able to do now. Your old life is dead, and you mourn it as you go on with your new life. This article will help with that.

SUICIDE AND CHRONIC ILLNESS. This is an important article because a lot of people with chronic illnesses go through depression. It's important to know when to ask for help and this article is to help prevent more suicides because of chronic illnesses.

LOSING A LOVED ONE TO A CHRONIC ILLNESS AND HOW TO HANDLE THE GRIEF. I've lost a lot of friends because of complications due to their chronic illnesses. This article will help you on how to handle grief in a healthy way. Death is a part of life. Just please know when you need to ask for help.

Source: A friend of mine made these a few years ago for Gastroparesis Awareness Month in August.

GPOEM and/or POP - What is it and How Does it Help?

GPOEM is a new procedure, created at Emory, in order to help normalize gastric emptying. The information about GPOEM can be found below. I'm not entirely familiar with it yet but it seems like a promising treatment. It is also called "POP" surgery. I guess we will see.

"SAN DIEGO — Gastric peroral endoscopic myotomy (G-POEM) can be used to effectively treat the vast majority of patients with gastroparesis refractory to conventional therapy, two new studies show.

Gastroparesis is a chronic, often disabling, disorder that affects about 4% of the population. It can be a complication of diabetes or surgery, but in about one-third of cases, it is idiopathic. Medical treatment frequently fails.

G-POEM is modeled on the natural orifice endoscopic POEM for the treatment of achalasia. The procedural principles of the two techniques — such as mucosal entry, tunneling, myotomy (including pyloromyotomy), and closure of mucosal entry — are similar.

Results from the first study, on 30 patients with gastroparesis treated with G-POEM, were presented here at Digestive Disease Week 2016 by Mouen Khashab, MD, from the Johns Hopkins Hospital in Baltimore.

All 30 patients had symptoms refractory to medical therapy, including onabotulinumtoxinA (Botox) injection and transpyloric stenting. Nausea and vomiting affected 25 (83%) patients, weight loss affected 27 (90%) patients (average loss, 10% of body weight), and delayed gastric emptying affected 11 (37%) patients.




Response Rate Exceeds 85% in Two Early Studies

For the 30 patients, mean duration of the G-POEM procedure was 72 minutes, and mean hospital stay was 3.3 days.

At mean follow-up of 5.5 months (range, 3.0 - 30.0 months), 26 (86%) patients had achieved a clinical response, defined as improvement in gastroparetic symptoms without recurrent hospitalization. Of the four patients who did not respond to G-POEM, two had diabetes, one had gastroparesis of idiopathic origin, and one was postsurgical.

"These responses were sustained, and there were no further hospitalizations," Dr Khashab reported.

Of the 17 patients who underwent repeat gastroesophageal scintigraphy, eight (47%) showed normalization of gastric emptying and six (35%) showed improvement.

'G-POEM concomitantly results in normalization of gastric emptying in a significant proportion of treated patients,' he said.

Adverse events occurred in two (6.7%) patients: one developed pneumoperitoneum and the other developed prepyloric ulcer.

'We had two minor complications, but these 30 procedures were performed by very experienced endoscopists at tertiary centers,' he explained. 'G-POEM is more technically challenging than esophageal POEM, as the location is more distal.'

On the basis of these 'amazing results,' Dr Khashab told Medscape Medical News, 'we are starting a multicenter prospective trial in the United States, South America, and Asia, recruiting about 50 patients. This will be definitive.'"

Source: http://www.medscape.com/viewarticle/863847

"G-POEM Shows Promise for Relieving Gastroparesis Symptoms, Improving QOL (Quality of Life)

LAS VEGAS — The minimally invasive procedure called gastric per oral endoscopic pyloromyotomy, or G-POEM, demonstrated promising short-term outcomes for patients with gastroparesis, according to retrospective data presented at ACG 2016.

'We showed that ... G-POEM is a feasible approach for treating gastroparesis,' Sunil Dacha, MD, from Emory University School of Medicine, said during his presentation. 'There was significant improvement in symptoms in most patients, and we showed an improvement in [Gastroparesis Cardinal Score Index (GCSI)], reduced gastric retention percentages on 4-hour [gastric emptying study (GES)] and significant improvements in quality of life domains.'


Dacha and colleagues reviewed data on 10 patients with refractory gastroparesis who underwent G-POEM (mean age, 47.3 years). Four patients had diabetic gastroparesis, four idiopathic, one post-infectious and one post-surgical. Eight were women, four were black and six were white.


The procedure was successful in all patients with no adverse events, a mean procedural duration of 47.7 minutes, a mean myotomy length of 2.94 cm, and a mean length of stay of 2.5 days.

After a mean follow-up of 4.6 months, eight of the patients achieved clinical success, defined by reduced GCSI scores and no recurrent hospitalization.

Mean GCSI scores dropped from 30.1 to 12.8 in these patients (P = .0001), and GES normalized in five patients and improved in two. Additionally, mean 4-hour gastric retention on GES dropped from 62.5% to 25.4% (P = .009) after the procedure.

Several quality of life domains on the SF-36 questionnaire also improved significantly at follow-up, including bodily pain, general health, vitality, social functioning and mental health.

One of the patients did not respond and was hospitalized for nausea and vomiting 15 days after the procedure, and another did not experience improvement of symptoms.

In the future, 'we need to identify the exact subset of patients that benefit from G-POEM, and we need to standardize the work-up and the procedural techniques as there is no uniform agreement on the procedural techniques at this point,' Dacha said. 'We need to standardize measurement of outcomes, ... long-term outcomes data are needed,' and especially important is 'training the future generation of endoscopists for G-POEM, which is essentially endoscopic surgery rather than an endoscopic procedure.' – by Adam Leitenberger

Reference:

Dacha S, et al. Abstract #2. Presented at: American College of Gastroenterology Annual Scientific Meeting; Oct. 17-19, 2016; Las Vegas, NV."

Source: http://www.healio.com/gastroenterology/motility/news/online/%7B8bbd20d4-ea2d-4dbb-adb9-1c45bc26f77f%7D/g-poem-shows-promise-for-relieving-gastroparesis-symptoms-improving-qol

Minimally Invasive Procedure for Gastroparesis Shows Promising Results

"A minimally invasive procedure at Emory University Hospital is showing promise in patients with gastroparesis, a digestive disorder in which the stomach does not empty food in a normal manner. The results of two small Emory studies were presented recently at the American College of Gastroenterology (ACG) in Las Vegas, where the researchers accepted the 2016 ACG Governor’s Award for Excellence in Clinical Research and the ACG Presidential Poster Award.

Gastroparesis occurs in diabetic patients and other patients with no underlying causes, where the muscles of the stomach and intestines do not properly function. Food then moves slowly or stops moving through the digestive tract.

In one study, Emory researchers performed a retrospective review of data in 10 patients who underwent gastric peroral endoscopic pyloromyotomy or G-POEM for gastroparesis. G-POEM involves guiding a small knife through an endoscope into the submucosal tunnel. Once there, an incision is made in the pyloric ring muscle to release the tightness of that muscle and normalize gastric emptying.

'In these 10 patients, clinical success was defined by improvement of symptoms measured with a decrease in the Gastroparesis Cardinal Score Index (GCSI) and no recurrent hospitalization,' says Sunil Dacha, MD, assistant professor of medicine in the Division of Digestive Diseases, Emory University School of Medicine, and a former advanced endoscopic fellow with Qiang Cai, MD, professor of medicine in the Division of Digestive Diseases at Emory, who is an expert in the minimally invasive procedure. 'We found G-POEM was clinically successful in eight of the 10 patients (80 percent) with a decrease in mean GCSI from 30.1 prior to the procedure to 12.8 at follow-up.'

Gastric emptying studies were obtained on seven of the 10 patients following G-POEM. Results showed gastric emptying had normalized in five patients and improvements were noted in two other patients. Mean four-hour gastric retention decreased from 62.5 percent to 25.4 percent after G-POEM, indicating the stomach emptied much faster at four hours after a meal. A follow-up questionnaire also highlighted significant improvement in quality of life in several areas.

One patient in the study had no response and required hospitalization 15 days after G-POEM and another patient showed no improvement in symptoms.

A second study, presented at the ACG by Abhinav Koul, MD, a former Emory medical resident who worked with Cai, detailed three patients with gastroparesis who had failed gastric electrical stimulation, but showed improvement following G-POEM. Electrical stimulation of the gastric nerves by a small implantable device is one treatment option for patients with gastroparesis. In this retrospective study, Emory researchers determined G-POEM can be performed safely as a salvage therapy for patients with gastroparesis who failed treatment with a gastric stimulator.

The study also found G-POEM improved symptoms (mean GCSI decreased by an average of 64 percent from 27 to 10) as well as gastric emptying (60.6 percent to 18.3 percent mean average) in these patients. However, more data is needed to further define the role of G-POEM in this challenging patient population. Koul is now a clinical assistant professor at the Medical College of Georgia-UGA Medical Partnership at Athens Regional Medical Center.

'G-POEM is showing some positive results as an additional therapeutic modality for patients with gastroparesis who suffer with delayed gastric emptying,' says Cai, who also serves as the director of the Advanced Endoscopy Fellowship at Emory. 'We are only one of a few centers in the U.S. offering this specialized procedure.'

In 2012, Cai started the POEM procedure at Emory University Hospital for patients with achalasia, a disorder of the esophagus that causes swallowing difficulties. He then developed the G-POEM program at the hospital, in hopes of finding alternative treatments for patients with gastroparesis."

Source: http://news.emory.edu/stories/2016/10/cai_dacha_gpoem_for_gastroparesis/

Gastric Bypass, the Sleeve, and Gastroparesis

I have seen, recently, in the support groups questions about the gastric bypass, sleeve, etc. I wanted to share with you the year's worth of research that I have been doing so that if you are considering a gastric bypass or a sleeve, you can be well informed. My doctor keeps trying to push a gastric bypass on me, but that is not going to fix the nerve damage to my vagus nerve. Personally, I don't want it because I'm scared it will cause more problems than it's worth. I've had friends pass away from complications due to gastric bypasses. In fact, three days ago when I was in the emergency room, a lady came in who had a gastric bypass done and was vomiting up blood. This is a decision that you will have to make for yourself but I wanted to share the information I've gathered so that you can decide if this is for you. Sources are included below. There are a lot of hoops to jump through in order to get a gastric bypass or sleeve. Each doctor is different on their requirements.

The information below will also go into detail the differences between the bypass and the sleeve. Before you make the decision to have surgery (and I know a lot of you are desperate for relief), make time to talk to support groups with other gastroparesis patients so that they can give you advice. I would also recommend writing down any questions/concerns that you may have for the doctor, lest you forget or the doctor is in such a hurry that you don't have time to think of questions while you're in the doctor's exam room. Be your own advocate. Additionally, I would get a second opinion, just to be on the safe side. You should meet with a nutritionist too, since your diet may be a bit different from others getting a gastric bypass. You and the nutritionist should work together to come up with a plan if you choose to have this surgery. There is also a new Facebook support group for those who have had it done, and also combat Gastroparesis: GASTROPARESIS AFTER BARIATRIC SURGERY.

Roux-en-Y Gastric Bypass:http://www.saintlukeshospitals.com/roux-en-y-gastric-bypass.php


This surgery is not for everyone, and I've already decided it's not for me...but I hope this research will help you make the right decision for you. Again, if your gastroparesis is caused by vagus nerve damage, removing parts of your stomach may not help. It also will not stop the vomiting.

Gastric Endoscopic Myotomy Showing Promise for Gastroparesis

This is an article copied from: http://www.medscape.com/viewarticle/863847#vp_1. I like to go back and read interesting breakthroughs when it comes back to gastroparesis treatment. Also, if you have had this procedure done, please email me your story: emilysstomach[at[gmail.com and I will include your story in this article, and whether it did or didn't work for you to let other GPers know. So far, the only clinic I know that does this procedure is Emory in Atlanta, GA.

Gastric Endoscopic Myotomy Showing Promise for Gastroparesis
By: Caroline Helwick
May 25, 2016

FDA Approves Gastroparesis Test for Any Clinical Setting
Nortriptyline Minimal Benefit in Gastroparesis
Ghrelin Receptor Agonist Improves Diabetic Gastroparesis
RELATED DRUGS & DISEASES
Kidney-Pancreas Transplantation
All nine of the study patients were refractory to conventional treatment — including gastric electrical stimulation in two patients — for at least 6 months, had severe symptoms, had been hospitalized at least twice in the previous 6 months, and had disturbed gastric emptying.

Mean procedural time was 48 minutes. There were no peri- or postoperative complications, and all patients could eat 2 days after surgery and were discharged by day 5.

Clinical efficacy was very high; 85% of the patients had improved significantly after 1 month. One of the failures was a recurrence at 2 months in a diabetic patient with renal insufficiency.

Gastroparesis Cardinal Symptom Index (CGSI) score decreased from 3.5 before the procedure to 0.9 at 1 month (P < .001) and 1.1 at 3 months (P < .001). Improvements were also significant for nausea, vomiting, abdominal pain, gastric fullness, and early satiety at 3 months (P <.001 for all), but not for anorexia. Time to half gastric emptying was significantly better after the procedure than before (133 vs 222 minutes; P < .001). Improved quality of life was reported by 63% of patients. Table. Gastric Emptying Mean Residual Percentage Before G-POEM, % After G-POEM, % P Value At 2 hours 76 40 <.001 At 4 hours 44 19 NS Dr Gonzalez acknowledged that long-term follow-up is needed for these patients, as are prospective studies, which his group has initiated. Dr Khashab said G-POEM can be considered not only for patients with recurrent hospitalizations, but also "for any patient with nausea and vomiting that significantly affects their quality of life, even without hospitalization." Although some patients respond to simple medical therapy, metoclopramide carries a black-box warning for tardive dyskinesia "and is only marginally effective," and antiemetics provide only symptomatic relief, Dr Khashab pointed out. Before attempting G-POEM, endoscopists should be skilled at esophageal POEM, he added. Dr Gonzalez offered a few procedural tips: "Start at the 5 o'clock position from the pylorus, keep checking your direction, and stop at the pyloric arch." Dr John Vargo These results come from small case series, but they show "intriguingly positive results" in terms of symptomatic response and gastric emptying tests, said John Vargo, MD, from the Cleveland Clinic's Digestive Disease and Surgery Institute. "G-POEM is definitely something we have to look at," Dr Vargo Medscape Medical News. "For these patients, pharmacologic treatments are imperfect; medications have many different side effects. We do have another avenue with gastric pacing, but again, this approach is in its infancy." "I'm hopeful G-POEM will help these very sick people who have a very challenged quality of life," he said. "It's good to see these results, and I look forward to longer follow-up and a larger series of patients." Dr Khashab, Dr Gonzalez, and Dr Vargo have disclosed no relevant financial relationships. Digestive Disease Week (DDW) 2016: Abstracts Mo2015 and 715. Presented May 23, 2016.

Drug Interactions and Gluten Intolerance

The doctors like to give people who suffer from Gastroparesis a drug called Erythromycin, but only if they feel like it's a last resort.









This drug will help motility as a SIDE EFFECT. You probably want to pay close attention to side effects because some of them can be sneaky. For instance, Phenergan (promethazine) has a keep out of direct sunlight side effect and can cause dizziness when you're exposed to heat (a big thanks goes out to Melony for pointing that out). To read more about Phenergan's side effects, please click HERE.

According to the Mayo Clinic, Erythromycin belongs to the class of medications known as macrolide antibiotics. It works by killing bacteria or preventing their growth. What you may NOT know about Erythromycin though, is that it's not always gluten free.

There is a particular brand (Abbot Labs) that is gluten free. If you have a gluten intolerance, you need to make sure that your pharmacy knows so that the pharmacist can catch gluten drug interactions on your behalf. If you are unsure of whether or not you have a gluten intolerance, please click HERE for more information.

If you want to advocate for yourself, in addition to letting your pharmacy know about a gluten allergy, here is a list of drugs that are gluten free. You can read the list by clicking HERE.

Drug interactions are important to catch, for your safety. What is a drug interaction, you ask? Simple. According to Wikipedia, a drug interaction is a situation in which a substance (usually another drug) affects the activity of a drug when both are administered together. This action can be synergistic (when the drug’s effect is increased) or antagonistic (when the drug’s effect is decreased) or a new effect can be produced that neither produces on its own. Typically, interactions between drugs come to mind (drug-drug interaction). However, interactions may also exist between drugs and foods (drug-food interactions), as well as drugs and medicinal plants or herbs (drug-plant interactions).

For instance, I was just placed on Cipro for an infection that I have right now. Cipro is a strong, broad spectrum antibiotic but it has a drug interaction with the muscle relaxer I take for stomach spasms (Zanaflex). The Cipro will make the Zanaflex build up in my blood stream, so I can't take them together at all. I have to finish the Cipro before I can start my Zanaflex again.

Your pharmacy will have their own drug interaction checkers online, depending on who you use. Walgreens and CVS both have one. In addition to those, you can also use this one, by clicking HERE or HERE, just to be on the safe side. You can never be too cautious and the pharmacy doesn't always catch everything. It's really important for you to advocate for yourself and to make sure that you use the same pharmacy with all medications as well as make sure that the doctors you see have the full list of medications you're on.

A Doctor's Advice to those with Chronic Illness

My friend Tanya recently shared an article that I wanted to re-post. It's a great read! I was actually sitting in the middle of my floor, in my bathroom, crying, because pain and nausea keep hitting me in waves. I woke up gagging and vomiting from horrible night terrors that continued when I went back to sleep to round out my four hours of sleep last night. I saw this article and read it.

I forget sometimes that sometimes, as our own advocates, that we can come on too strongly to doctors. I definitely don't want to intimidate anyone, I just want help - as I imagine many chronically ill people feel. I think as someone who is chronically ill, we tend to give up on doctors before we even meet them because of past experiences with other doctors, specialists, etc. If you're like me, you've seen too many doctors to count. But, this doctor's advice brought me back down to Earth. I'm probably guilty of doing some of this so I wanted to share this article with everyone.

"A Letter to Patients with Chronic Illness
by: Dr. Rob BLOG LINK: HERE

Dear Patients:

You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain - is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:


Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.

Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.

Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.

Use the ER only when absolutely needed – Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.

Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.

Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally suck.

Forgive us – Sometimes I forget about important things in my patients’ lives. Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don’t want to admit my limitations. Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded. Well, maybe I mind it a little.

You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living. I hope this helps, and I really hope you get the help you need. It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.

Sincerely,

Dr. Rob"

I think this is amazing advice! I am guilty of putting up with jerks and avoiding doctors because of it. But, I hope this helps you in some way. It stopped me from crying earlier. <3

You’ve Been Diagnosed with Gastroparesis, Now What?

I wrote an entry about advice to those who have just been newly diagnosed with Gastroparesis but I wanted to make an entry of my top five things, I believe, you should do after being diagnosed. It contains a lot of good advice from a few members of a Gastroparesis group I was in as well. The links will be in all caps and in bold. Just click on them and they will take you to a different link.



1. You Have Named Your Illness - How to Help Family/Friends Understand

First, it's going to be hard for other people to adjust to the fact that you have an illness and it has a name. It's no longer invisible. People see you and it is NOT all in your head. However, having an invisible illness can be tricky because people often don't understand what they can't see. It can be difficult with all of the extra stress an invisible illness can put on you, so, I am going to recommend two of my blog entries that you should read and maybe read over with again with friends and family.

Please remember that people react differently to different situations. If people seem angry with you or tell you that it's all in your head, just give them some space. I had a friend who was very angry with me before I was diagnosed because I kept blowing off going to the movies, going out to eat, even going to the theatre! She was angry with me and called me flaky. She stopped calling me. After my illness and after reading my blog, I got a message from her on Facebook. She apologized to me! She said that she knew I was sick but not how sick. So, be patient. The important part is that you found out what's been making you sick and that's a very big step!

The first entry you can find by clicking HERE. is, "How to deal with People Who Say, 'But You Don't Look Sick.'" It's going to happen quite a lot, and you'll need to learn how to be patient with those people. This entry will help you and prep you for when that time comes. I know it's not easy to deal with, believe me, I've dealt with an awful lot, but it will help get you through the worst of it. I did not write this article, but I wanted to share it because it was helpful.

The second entry you can find by clicking HERE is, "How to Talk to Someone with a Chronic Illness; What You Should and Should Not Say." Keep this one to give to people as well. When people we care about are in pain, we want to offer words of encouragement, help ease their pain and motivate them to stay hopeful. Unfortunately, our words of cheer can often be misinterpreted by those who live with chronic illness. Rather than feeling supported, our words can evoke the feeling of "she doesn't understand my life at all." This can permanently affect our relationships. There are some tips in that entry to keep in mind when talking to a friend living with an invisible illness. I did not write this article, but I wanted to share it because it was helpful.

I'm going to add one more entry that will help you as well. It's called, "Advice for Caregivers and Loved Ones Who Witness Loved Ones Suffering with Gastroparesis." You can read it by clicking HERE.



2. Look Up Resources For Support

It's really hard to get the diagnosis from the doctor telling you that you are chronically ill. When I was diagnosed with Gastroparesis in March of last year, I had never heard the word "gastroparesis" before then. After I got home from the hospital, I went online to see what I found find out about my new illness and find a support network. When you're told so many times that you make up your illness or that you look great when you haven't eaten in a week and barely have enough energy to take a shower, it hurts. It hurts emotionally and physically. You can talk to a friend, partner, husband, wife, or neighbor. It does help to talk and get those feelings out.

I've found what really helps the most is to talk to people with the same illness that you have. You don't have to explain yourself when you break down and vent, or if you burst out into tears because of a song on the radio. You don't have to hold anything back when you tell them how sick you got after eating something you shouldn't have. They don't push, probe, or anything like that. Most of all, they DO NOT judge! I have compiled a list of great online support groups and resources, and I update the list when I find new groups. The list contains Facebook pages, websites, blogs, and mailing lists. It's important to have resources to not only research GP, but to find people like you to talk to. You can find the list by clicking HERE. This ties in with my next point, you need to be your own advocate.



3. Be Your Own Advocate

Research your illness. Sadly, doctors don't know everything. You should research your diagnosis. However, with all things on the Internet, make sure you're researching reliable sources. It's important for you to stay on top of all of the latest news about GP/DTP because most doctors aren't very familiar with GP or how to treat it. I usually go into the doctor armed with knowledge he doesn't have. Most people with GP, I've found, know more about GP than the doctor. I was asked today, actually, by the nurse at an urgent care clinic near my house what Gastroparesis was. I explained it to her and she looked a bit bewildered. But hey, I'll be happy to spread awareness any way I can. If you find a doctor you know, like, and trust, keep them!

Ask Questions about your illness! I can't stress this enough. After you do your own research, compose a list of questions that you have for the doctor and bring them in with you. If you write down what you need to ask, you won't forget. I've given my doctor a list of questions that I've written down before. He addressed them all. If you have any further questions after seeing him, write them down and call his office to leave them with the nurses. Your doctor will get to answer them when he has time.

Make sure the medications are helping you, not harming you. When I went to the Mayo Clinic, I was on about twelve different medications. The doctor stripped me off of almost all of them. Two of the medications actually did the same thing as well as could paralyze my stomach! The other medications had side effects that were just awful. You can find out more about Reglan by clicking HERE has irreversible neurological side effects! I was never told stuff like this! Be sure to check with your pharmacist and your doctor to make sure the medication you have is right for you.


4. The Gastroparesis Diet Plan

You want to make sure that you lower your risks of getting a GP attack. I wrote an article containing the diet plan from Mayo that I received from there, plus it links to Pinterest Boards with GP friendly recipes - like smoothies, juicing, and friendly food. Be careful though, everyone is different. What works for someone may not work for you. It's trial and error. It can be found by clicking HERE.

The diet is important because it will also help you determine what you can eat and what you can't eat. Again, no two GPers are the same. I can tolerate Yogurt on good days and most people with GP can't tolerate dairy. My advice is to keep a food journal. Log what you eat, what time you eat, and how much you ate. Also, record any GP attacks you have and the time they start and end. This will help you identify patterns and triggers in your diet. It's helpful and it cuts back on testing at the doctor's office.


5. Don't Give Up!

This is by far the MOST important point! You are NEVER alone so don't give up! Find someone to talk with, to help you through those rough times when you need it most. I have had some really rough days when I wondered what kind of life I was going to lead with this illness. What kind of life can you have if you vomit six to eight times a day? But, it IS a life. My life. I'm lucky to have it, so I plan on fighting for it. I'm excited to pass off a pair of boxing gloves to you so that you can fight along side me, fellow GP Warrior. <3 For more advice from our Gastroparesis Facebook Members on how to cope with being diagnosed with GP, please click HERE.