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Wednesday, November 8, 2017

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.