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.

Gastric Stimulator Research & Personal Experiences From Patients

A lot of people have had a lot of questions about the gastric stimulator. What is surgery like? What is the prep before the surgery? How long does it take to heal? What will it be like after surgery? Will I be able to eat?

I haven't had the surgery done myself, although I do have a spinal cord stimulator, so I asked several people for their stories of having the gastric stimulator placed. I wanted to share these stories with you in case you were thinking of getting the gastric stimulator and had questions about it. There is also a Facebook group, composed of members who have had this surgery done and can answer any questions you might have. It's important to ask questions and do your own research before having a major surgery like this one. Additionally, remember that everyone's GP (Gastroparesis) is different. The link to the group can be found here: LIFE WITH A GASTRIC STIMULATOR.


UPDATE: I wanted to add this video into the article because it is an interview with Dr. Tom Abell, who revolutionized this technology:








The first story comes from Donna:

The second story comes from a patient who wanted to remain anonymous:

This is what it looked like after the doctors placed the gastric stimulator:

GASTRIC PACEMAKER OR NOT: MY EXPERIENCE
BY: Christina T

I know there are so many decisions to be made when you are faced with a chronic illness. You may often question certain decisions whether it be tweaking your medication regimen, deciding to enroll in a new clinical trial, or the basic question which seems so hard to answer: how do I control my symptoms? It seems easy for those around you to just simply say “All you have to do is take a pill a couple times a day” or “ Haven’t they figured out how to fix you yet?” But as we know chronic illnesses are not that simple to treat, that’s why they are called “chronic”.

One of the decisions you may be faced with is “Should I get a gastric pacemaker?” or “Is this the right treatment for me?” Most of us will begin meeting with our doctors and our care team to come up with a plan that discusses the pros/cons of the procedure, the actual surgery, and the recovery period including the dos and don’ts after surgery, any follow-up appointments, and how you will need to take care of yourself afterwards. All of this can seem very overwhelming but it’s important to remember to make the best decision for YOU! Our team can flood us with information but you have to be your own voice and be comfortable with the decision you are making.

Once my treatment plan wasn’t working, I faced the question “Do I get a gastric pacemaker or not?” After deciding to consider the pacemaker, my GI referred me to a surgeon who would implant the Enterra device. I went in to the appointment ready to hear what he had to say, but had a nervous feeling in my stomach. On the first visit he went over my symptoms, how long I had felt this way, what had I tried, etc. It was a very thorough exam in terms of him asking me questions and going over my long, detailed medical history. He asked me how often I got nauseous, how I was controlling it, and if I felt the treatment was successful in dealing with my symptoms. I answered him and told him that I was NOT nauseous but did throw up after most meals. He continued on with the appointment and gave me my packet of information on all of my pre-op appointments for the next week and my surgery was scheduled for 2 weeks from then.


I then left and had a follow-up scheduled for the next week. First, I was supposed to have a meeting with him, and then go over to the hospital to have my blood work, EKG, and other routine tests performed to give me the green light for my procedure. I showed up for my appointment and he again reviewed my symptoms and a “light bulb” moment went off in his head. He finally registered that I did NOT have nausea. Additionally, he realized I was a patient who needed to have MRI’s on a yearly basis for other medical issues. He then began getting upset with me and calling my GI and getting very angry for why she sent a patient who was not a good candidate for the procedure. I felt so uncomfortable as a patient because I was sitting in his exam, room and he was right next door calling my GI during a procedure, made her step out of the OR because he was so infuriated that I had wasted his time and how could she send me to him when I was not a candidate. I remember sitting there and feeling so embarrassed for him. He was so angry that I don’t know if he realized the whole office could hear him basically chewing out my GI. He then came back into the room and it was decided we would cancel the procedure. After we made this decision, he was still pretty heated and made me feel very badly that he had to call everybody and cancel everything. After all, it was more or less the 11th hour but I didn’t care. He kept saying things like, “Now I have to find someone to take your place because we already have the device here, I have to call the hospital now and take you off the schedule and get a hold of so and so, etc.” But, I knew in my heart no matter what he said, I had to do what was right for me! That gut feeling I had felt all along was becoming harder and harder to ignore. I felt the writing was truly on the wall at this point.

So, in conclusion, the lessons I’ve learned that I hope you will gain wisdom from is this:

1) Listen to your gut- if something doesn’t feel right to you whether it be in your healthcare or your job or some other aspect of your life, trust your intuition. Don’t hope that in time you’ll become comfortable with the situation or decision.
2) Do your research- I always find it helpful to talk to others who have gone through the same thing. Ask friends, family members, and coworkers about their experiences, who they have used, and if they would recommend him/her. Talk with your doctors and ask for referrals from them. Seek second and third opinions, don’t just settle- -your health and life depend on it!
3) Always go in with an open mind- Go into every situation with an open mind and then make your judgments after. Whether it is an important appointment like mine, a job interview, or something else, never let your judgment be clouded by preconceived ideas or thoughts. Doors are always opening and closing throughout our journey, be open to what life has in store for you.
4) Allow for reflection time- Very rarely in life, unless it’s an emergency, do you have to make a decision right then and there. Being able to walk away from important decisions and come back to them after having time to think things through often allows people to make better decisions.
5) Know and understand exactly what’s involved in your recovery- Make sure you understand your restrictions such as diet, activity limits (i.e., heavy lifting, when you can resume working, etc.) and how to properly care for yourself after to ensure you have the best chance possible for a smooth and successful surgery.

This is a picture of the gastric stimulator, taken from: http://www.implantable-device.com/wp-content/uploads/2011/12/Tantalus-II.jpg?94fb22




This story is Stephie O.'s personal experience:

My story is a long one of constant misdiagnosis and long time searching for a doctor who could help once I found out what I had and suffered for over 15 years. So on that note my doctor who given me the surgery would only except me is my percent was low enough on the gastric empty scan 15% or less and had the symptoms needed to fit into what he felt were acceptable to risk the surgery. I threw up many times a day sometime so many I would end up in the hospital. The pain i had sometimes was not bearable I was a complete mess. So I was a go ahead for the surgery. The doctor had me take a xray to look for good placement then did surgery soon after. I had mine on my left side a few inches from my ribs. There is about a 2 inch scar.

When I woke the pain was worse than expected and the breathing! Every time I took a breath it got to a horrible pain scale! But as the days went on that pain was completely gone. I stayed in the hospital 4 days but he said the average is 3 day's[sic].

On the pain relief scale and nausea scale things were better almost instantly. I was not 100% but things were livable. When I seen the doctor less than a week after discharge he was able to turn up and change the frequencies. When he did that I was aware of a small pinch right where my pacemaker was which as quickly as it came ...gone. I was about 99% better only here and there had I had very small episodes of pain. The nausea came and went but the intensity with decreased on such a scale that my life is so much better with the device then without it. About a year and a half later I notice things were going downhill an extremely fast. I went to see the doctor and he turned up the device which helps for a very short time and the same thing would happen I would get extremely sick and in lots of pain he turned it up to the max that he could. things got so bad I weigh 98 pounds at 5'10" ghe doctor quickly put a feeding tube in my stomach and left the pacemaker in. We tried to make things better for months after that and nothing was working. If I continued at this rate they said I could die soon. So we got aggressive and took the feeding tube the gastric pacemaker out and removed about 3/4 of my stomach like a cancer patent would have done . I am about 60 sometimes 70 better now. It was all a long road. I can say the pacemaker make my life livable for a long time and I was amazed at how well it worked! Would not change a thing about that surgery ND would do it again!

This story is from Julie:

I got it on April 20th. Reason [sic] I made the decision to get it was because I couldn't handle the throwing up and nausea anymore. I first had to get approval through my insurance. Once they approved [it] I got the temporary which is for 5 days and had an endoscopy. It worked so I went ahead and talked to the surgeon to get the permanent one. Surgery was very painful. I have a high tolerance when it comes to pain meds but the gas pains where the worst. I still have pain where the pacemaker is located but its not as bad as it was before. I did stay over night in the hospital because they wanted to make sure anesthesia wouldn't make me sick and [also wanted to see if] I could tolerate food. I am still getting use to it and I already had my settings changed because I am still getting nauseous but was nausea free for the first 2 weeks. It has helped because I have had less nausea and vomiting. I would definitely recommend to anyone who throws up a lot and is very nauseated like I was. Being scared is a natural reaction to have when it comes to having surgery but just try to think positive. I was walking that next day. They wanna make sure you are able to use the bathroom (peeing). Doesn't help the GP pain at all. It is only for nausea and vomiting that's all. Yes I do notice a big difference between before and after the pacer. Less days of being nausea than before.

This is how the gastric stimulator is inserted, photo taken from: http://image.slidesharecdn.com/stomachpacemakerforweightloss-111109000052-phpapp01/95/stomach-pacemaker-for-weight-loss-8-728.jpg?cb=1341455043




This story is from Kathleen:

I've had my gastric pacer for 1&1/2 years. I was terribly sick and had exhausted all other avenues. Getting authorization from the insurance company was pure hell. I finally received news that I was authorized. I had lost 84lbs. I jumped at the chance for help. I didn't have to do a temporary. The surgery went well. I had a few complications so I ended up with a 4 day stay. I traveled 9 hours round trip every 3 months for adjustments. With each adjustment I felt better. For a whole year I got great relief. I put weight on and avoided hospital stays. Then I started throwing up again. I'm losing weight like crazy again. I had a GES study and CT Scan. They showed hyper digestion. I've had 6 ER visits the last month to get stabilized. I am now sick again almost daily. This by all means isn't a cure. I have an endoscopy with baristate on the 27th of this month. I don't know what my future holds but at this point I'm willing to try anything. I say if you're sick to at least give a pacer a try. 💚

This is Melissa's story:

I'm Melissa. I have a gastric pacemaker and wanted to give you an idea of how mine is going and etc. First of all, it took me a long time, over a year, to get to the place where a doctor agreed to give me a pacemaker. Because of my intestinal dysmotility [sic], both the Cleveland Clinic in Ohio and Piedmont in Atlanta didn't want to put it in. They thought it wouldn't help because they thought my intestinal dysmotility [sic] played too major of a part in my symptoms of nausea, vomiting, weight loss, malnutrition, dehydration, bloating, pain, and more. However, I wanted to try the pacemaker before any of their options. The CC wanted to do major surgery and was even talking transplants and Piedmont just wanted to give me a bunch of tubes which I believed wouldn't help all of my symptoms. So I opted to go with a doctor in Augusts at Georgia Regents Medical who wanted to try the pacemaker. His name is Dr. Rao.

Surprisingly once we put in the paperwork with the insurance company it was approved within a month or so. Once it was approved, surgery was set. Getting ready for surgery wasn't difficult, just the typical don't eat after midnight (which I couldn't eat anyways), and washing the surgical sight several times with special antiseptic soap. I did have to do an extra pre-op appt because I have tachycardia so they had to do an extra EKG and such to double check to make sure my heart was good.

The day of surgery was nerve racking to say the least. My sister, nephew, and best friend went with me. It was scheduled early so as to give me more time in the hospital to recover. They had already planned for me to stay overnight. My particular surgeon had all his pacemaker patients stay overnight. Not all surgeons do that. If you are given the choice, stay overnight. It was nice to have nurses help you get up and around. Not to mention, the pain meds in an IV are much easier to take then the pills they give you when you go home. Anyhow, once at the hospital it was the normal check in and probably within an hour of being there I was getting anesthesia. The surgery itself was about 3 hours.

I honestly don't know how long I was in the recovery room. Several friends drove down to Augusta to see me while in recovery and I don't remember it at all. Once moved up to a room I was more coherent and definitely started to feel the pain. It was done laparoscopically however where they put the pacemaker in had a large incision. Plus my entire abdomen was just sore. I was thankful though that I didn't throw up. I usually throw up after anesthesia but apparently they double dosed me with nausea stuff before I went in and put a patch behind my ear that stayed on during surgery and for a couple days after.

Anyhow, I learned quickly to let your nurse know you are in pain. There is no point in toughing it out when they can give you the good stuff in your IV. Because of the pain medicine and alternating giving me zofran and phenegran in my IV I actually slept ok, for someone who had just had surgery anyways. It was painful to get up and use the restroom and walk around but that's why staying overnight is also helpful. The nurses helped me, as well as my awesome sister who spent the night. I would recommend someone trustworthy spending the night with you.

I started to get really flushed and hot and when the nurse didn't come to check it out, my sister totally went out and got that nurse. The day after surgery they had me walk around some and then said I could go home. Because we were 3 hours away from home, we opted to stay in a hotel nearby for another day or two. That was a good call too because without the pain meds through the IV I was super sore. They gave me percocet to take, but I opted not to take it.

My stomach never did well with pain meds and I wasn't about to risk it right after abdominal surgery. So I crushed up tylenol and used that for my pain medication. Not as effective as the hospital pain meds by any means but enough for me to be able to grin and bear through it. The ride home was rough. Every little bump made me hurt.

I also had to put a pillow between me and the seat belt bc of where my pacemaker was placed. Different doctors place them a little differently but mine was placed right where the seat belt goes across. So rough 3 hour ride home. But once home, or rather at my sister's house to recover, I was able to relax a little bit. I won't lie. The first week after surgery is painful. I was really sore and moving around too much really smarted. Getting into a good sleeping position was hard.

The worst though was when I finally had to have a bowel movement. Pushing down was very painful but once it was over with I was so relieved. Anyhow the pain subsided some after the first week, and then continued to subside as the weeks went on. By my post-op appt a month after surgery my abdomen was only hurting when I stretched it the wrong way.

Now at my post-op I had my pacemaker adjusted up. I had been trying some soft foods like jello and noodles but wasn't always keeping them down so they adjusted my pacemaker up. After my adjustment, for a couple weeks I was able to have some more soft foods and stuff like crackers but only a few bites before I got extremely nauseous or even sick. So I was still having to supplement with Ensure Plus.

After another month of this I went to get it adjusted again. Unfortunately, I got really sick about that time of the adjustment with a UTI and sinus infection. This set me back big time. My gastroparesis flared and the antibiotics they gave me made it even worse. After trying to keep down 3 different rounds of antibiotics my stomach completely revolted and I couldn't keep anything down. I ended up in the hospital with a critically low BUN level and had to get fluids and a banana bag over the course of 3 days there. That was last weekend.

So now I am waiting to see the doctor in Augusta tomorrow to see what we can do to get everything on track. I will say this... the pacemaker seemed to help for a couple of weeks. However once my stomach started to flare, it became useless even after several adjustments. I know everyone has different stories but mine has been a struggle so far. I will say this too though. I have not completely given up on my pacemaker. My surgeon says that sometimes it takes people up to 6 months for their pacemaker to really 'kick in' and I am really hoping this is true for me. I am hoping that it was just the infections and the antibiotics that messed with my pacemaker's success. I will know more tomorrow when I go see my doctor in Augusta.

The gastric stimulator, photo taken from: http://diatribe.org/sites/default/files/diabetes-tech.png



This is ReggieKay's Story:

In 2005 I had a neck surgery on C/5-6, two months after that is when my symptoms started and of course no one would admit that my vagus nerve was damaged, but I believed it was. I had nothing wrong with my digestive system before this.

I went through so much before even being diagnosed, even an ERCP and I got pancreatitis, from it, almost losing my life. They even tried Botox, reglan, domperidone, and finally, put me on tube feedings. I was down to 98 lbs, showing the tube feedings had became unsuccessful, then I was put on TPN and sent to a long term care facility, eventually at the end of 2008 sent home to die.

In 2009 a doctor in New Orleans, Dr James Smith, agreed to see me. I went from the first office visit with him to ICU for long time, and my only hope was a gastric stimulator. I was the worst case he had seen and at the time he had about 6-8 patients. He pushed for the stimulator, thinking it would be only thing to really save my life.

I was on TPN until 2012 and after many adjustments and many septic infections, the last one about did me in & the doctors said I would not survive another one, so we finally put the stimulator on the highest setting and I was able to get off TPN and have my picc line removed. I also, decided to remove myself from all stress & an emotionally abusive relationship. I got off all of my prescriptions, except Marinol, another life saving drug for me. I believe stress makes GP much worse.

The gastric stimulator batteries usually last 4-5 yrs, but mine went out earlier due to being on the highest setting. I am to replace it every 2 yrs. This year it went out, it was my fault because I was going through a divorce, went off grid and lost down to 119 pounds before having my batteries replace again. Since October of this year I have gained 10 lbs. I still have a G-tube for drainage and having it replaced at the end of this month.

Now, the surgery for gastric stimulator was not easy for me, now I think they can do it better. My doctor had not done many [of these surgeries] at the time... they cut me in two places up & down my stomach and on my right side. I woke up in a lot of a pain and my bladder was traumatized, so I had to be on a catheter for a few weeks.

Scary as this may seem I would do it all over again. I really believe it saved my life & opened a new world to me. I did not prepare for the surgery itself , just regular no food or drink after midnight, and recovery I would say was 4-6 weeks.

Normally, you go home in a couple of days. The hardest part was figuring out what the settings should be, because every one is different. That was the most frustrating part to me and the doctors. I was so dependant on TPN and everything was shut down for so long my body was in bad shape and I think that's why it was a slow process for me. I totally would think the sooner the better. I support the gastric stimulator and do believe it can save lives. I hope this helps! ~ ReggieKaye

This is Christine R.'s Story:

What made you decide to get the gastric pacemaker?
AFTER FOUR AND A HALF YEARS OF STRUGGLE AND FAILING ALL MEDICATIONS, THE PACEMAKER WAS MY LAST OPTION.

What was the process that you had to go through to get the pacer?
I HAD TO KEEP A WEEK LONG JOURNAL ABOUT VOMITING, PAIN, EARLY SATIETY, AND NAUSEA; DO A 4 HOUR GASTRIC EMPTYING TEST AND MEET WITH THE SURGEON TO DISCUSS THE OUTCOME OF IT ALL.

How long did it take you to get used to the pacer?
PHYSICALLY BEING THERE, IT DOES'NT TAKE that LONG...MAYBE A WEEK OR SO. ONCE ITS ON AND RUNNING YOU DONT EVEN NOTICE IT.

Did it help you?
AT FIRST IT DID AND THEN IT'S EFFECTS STARTED TO WEAR OFF. IT IS CURRENTLY TURNED OFF AND IM QUITE MISERABLE.

Would you recommend it to others?
IF YOU HAVE THE OPTION TO GET IT, GO FOR IT! WE HAVE SO LITTLE AVAILABLE FOR US, ANYTHING IS WORTH A SHOT.

Do you have any advice for those who are scared of the surgery but are considering getting the surgery?
JUST KNOW YOU'LL HAVE PAIN, BUT ITS NOT HORRID. TAKE THE PAIN MEDS AS OFTEN AS YOU'RE ALLOWED AND GET REST AS MUCH AS POSSIBLE.

How soon were you walking around after the surgery?
THEY WANTED ME WALKING AROUND THAT EVENING, BUT I SUFFER FROM MILD POTS SYNDROME AND WAS HAVING LOW BLOOD PRESSURE, SO I COULDN'T WALK AROUND UNTIL THE NEXT MORNING.

Did it help the GP Pain any?
ITS ONLY HELPED VERY MINORLY.

Do you notice a difference from before the pacer and after the pacer?
NOT PARTICULARLY, BUT I FONT REGRET IT. HOW WOULD I KNOW ONE WAY OR THE OTHER IF IT WOULD HELP IF I HADNT OF TRIED.

My story with Gastroparesis starts in 2010. One day I was fine and the next day I wasn't. I was close to turning 30 and my life completely changed. I woke up feeling sick and didn't know what was going on. I ended up throwing up for hours on end and being taken to urgent care. That was the beginning of GP for me--except they didn't know that. I also had symptoms of vertigo and a migraine, both of which I had never had before. Everything continued for MONTHS before they diagnosed me. I was wheelchair-bound, vitamin-B deficient, not driving, not working, and losing weight and hair by this time. Over the course of four and a half years I lost 115 pounds and tried several medications that didn't work. When I started looking pretty bad and my hair dying, that's when my GI doctor suggested the pacemaker and I started the process. Even though it's not been this BIG miracle, I don't regret it. We GPers have so few options offered to us, so why not take those given, you know?! I do have some secondary disease as a result of Gastroparesis. I now also have (mild) Postural Orthostatic Tachycardia Syndrome (POTS) and neuropathy in my legs, but I don't let any of my diseases slow me down!

This is Diane S.'s story:

I got mine Feb 2011. It took me 2 years of weight loss and being on liquids to get it. Even though I was down to an average intake between 400-700 calories daily, I wasn't a candidate for tubes because my weight had more or less stabilized and my labs had compensated. Surgery was no joke. I spent over 8 hours in the recovery room because they couldn't get my pain under control and the irritation from the surgery had kicked off severe vomiting that they couldn't get under control either. But, once they gave me a pain pump and got me up to my room, I was able to stop using the pump after about 5 hours. I was sent home about 36 hours after surgery, about 11 pm...the delay was due to the on call surgeon (not my usual one) writing for the wrong pain medication for me to take home. Only took those for about 3 days once I got home. Was out for 3 weeks, but was able to return to work at almost full duty. I only had to get help if holding a large patient, or holding a patient up for an extended period (I worked in an ICU). The stimulator helped right away with the nausea, but there was noticeable changes after the 3rd setting change at about 5 months. So far, the battery is holding its' own.

This is Micki F.'s Story:

They [the doctors] believe I had the symptoms of GP for a long time but didn't get diagnosed until 2010. That is when the decision was made that if I didn't quit work I would be dead before the end of the year. The down side of that is I was left with no insurance.

By the time I became eligible for insurance and went through multiple appeals to get the pacer approved in May of 2012, I had lost from 122 pounds down to 83 pounds. I really had gotten so tired of fighting at that point they were afraid I might not survive the surgery. Dr. Abel placed my pacer with the help of Dr. Lahr at UMMC in Jackson, MS.

The constant 24/7 nausea was all but gone when I woke up. It's not a cure all but it has been a life saver in that I am more functional. A nurse taught me that sometimes, not all the time, the difference is those who give up, those that have been let get too far into the illness, and those who want to strive to thrive. So I spent a week in the hospital being one that was almost too far into it, then I went home and we started the long recovery.

In this three year time I have gained from 83 to 109, I have gone from not able to eat anything to getting down about 1000 calories a day of soft foods. I have gone from taking phenergan (liquid works best for me) 4-6 times a day down to twice and the most. There are still problems the gastric stimulator can't fix. My bowels don't move at all by themselves so I am totally laxative dependent. I can't drive or work because of the sudden syncope episodes and sudden bowel explosions with no warning from the unpredictable laxatives.

I still have to get 2 multivitamin drips a week. But with the gastric stimulator I am alive. My nausea is limited to none if I am careful. I gain weight on a limited diet.I have been able to return to church 90% of the time. I am able to enjoy time with my grandchildren when they visit me at my home instead of a hospital room or ER as before. I have learned that my life will never be the same again, but thanks to the gastric stimulator I have a life to live. Day by day, but I have a life to live. I hope this helps anyone trying to decide. It's an extensive surgery; not for quitters. But as you heal and get adjustments the quality of life returns to quality.

This is Bridgett K.'s Story:

To fully recover was probably about two months. I had pain on my right side where they implanted every time I got bloated or when I stood up straight. Still get pain in that spot if I am stupid with what I eat. There wasn't much prep to the surgery. They called me two weeks before surgery to say I had been approved. They wanted to put it in one week from that date but my insurance wouldn't let them. So I met with the surgeon a week before add he explained to me the procedure. The night before I wasn't allowed to eat(not a problem) :). I was super excited because my picc had to be pulled about a month prior because I got sepsis from it getting infected so I wasn't getting much nutrition.

My husband has video of when I first woke up. They have you pretty doped up so I don't remember much except worrying about imaginary cupcakes. That night I had a liquid dinner and the great day they turned it on. No significant improvement from turning it on the first time. Maybe a little improvement in nausea. I believe the surgery took about two hours. So it was pretty quick. I was terrified. Partly because it was a surgery but mostly because if this didn't work then I would be tube fed for the rest of my life. Not that there is anything wrong with that. I have had a picc line twice and got sepsis twice and the idea of a tube directly into my intestines just scared the heck out of me. If that's how I would have to live I'm sure I'd adjust but I was really hoping the outset a would work. My gi isn't exactly a people person and he's a little weird but I'm glad I found him. He gave me a new lease on life. I got down to 94 pounds and at 5'3 I had lost 40 pounds and was emaciated. No one seemed to help except this guy. I was allowed to eat after surgery as soon as I could but I spent most of the day of surgery sleeping.

They monitor the gastric stimulator through a handheld device that tells them my settings and they can adjust the settings through that device. The newer machine that just came out will even tell your doctor when it's time to replace the machine. I would say for anyone who had exhausted all other options this is worth a try. They can take it out if it doesn't help. I don't even mind the two three inch scars. I have plenty of other surgery scars from fusions and other surgeries but I'm proud of these scars.

Gastric Stimulator with handheld device that the doctor holds, photo taken from: https://i.ytimg.com/vi/6MB72kTHLrU/maxresdefault.jpg

Advice for the Newly Diagnosed with GP/DTP

Today, I posted this question to one of the groups I used to be in, "if you could give any advice to the newly diagnosed with GP/DTP, what would it be?" I received some amazing responses, so I thought I would share them in this article. I've tried to cite people as best as I can without giving away personal information. Please note that letters in all caps and bold are links.

I know that when I was finally diagnosed in March of last year, I did two things that really helped me.

The first thing I did was start this blog. I started it to keep track of my medical information, visits, testing, and everything else that I wouldn't remember later. My main goal was to help people through my own experiences so that maybe they wouldn't repeat things that I have done in the past like listening to bad advice from doctors. I was put on two medications that actually did the same things AND they slowed down motility! I also know that through my research, there's not really a whole lot on the internet about Gastroparesis or support groups. So, I made THIS entry to put all of my research in one place for people who may need support groups. My article with online resources has since been used by United Healthcare as an electronic resource for GP/DTP.

The second thing I did was purchase a journal. I carry my journal around with me everywhere! I do daily entries to log what I eat, when I eat, what time, when gastric spasms start, if I go to the bathroom, when I get sick, how much I got sick, and how I feel. You can give this journal to your doctor for them to read to help them understand what you're going through. If your stomach is like mine, it betrays you when you get to the doctor so that the doctor thinks it's fine. It will also help you distinguish patterns in what you eat and what makes you sick. It might cut down on the amount of testing needed at the doctor's office as well. I've got a TARDIS journal that I write in because I'm a huge Doctor Who fan. A picture of my journal is below.



Also, here is a picture of me during Christmas 2011, before I became ill. The picture below it is the one I took today.




In addition to my own personal advice, I would like to add some more from the wonderful GP Facebook Page that I own/admin. Here is a list compiled from that page.

1. Emily's Stomach. http://www.facebook.com/emilysstomach I have admins who will help you keep motivated and to help to answer any questions you may have. You can PM the page and we will answer your question to the best of our ability. I would also suggest joining a support group. I have a lot of good ones listed in a different article.

2. Be your own advocate (Kirsten). I can't stress this enough! Being your own advocate and do research on the newest treatments for GP. Look up the medication you're prescribed and see if the doctor missed potential side effects like slow motility, nausea, and vomiting. Like I said previously, my GI doctor put me on two medications that did the exact same thing and they slowed my motility WAY down. HERE is a list of medications that make GP worse. **Please consult your doctor and pharmacist about medications as I'm just giving advice, I am not practicing medicine. I'm trying to guide but not take the place of the professionals. Always check with them FIRST.**

3. Believe in yourself (Melissa)! You are your own cheerleader and you CAN do this! I know the road may seem rough sometimes but believe in yourself like we believe in you.

4. Research your condition (Diana)! 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 (Melissa). 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.

5. Ask Questions (Melissa)! 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. Ask about other treatment options for GP like Botox, the Gastric Pacemaker, and Domperidone.

6. GI doctors at the MN Mayo Clinic recommend marijuana, where it's legal, to help with GP (Melony). Be careful though, because even though marijuana might help you eat, it can also slow motility.

7. It's NOT all in your head! I *hate* it when people say this and I was told this nonstop for the past few years. I've lost friends because I kept cancelling on them. They thought I was just being flaky or that I was being anti-social. They also told me, "well, you're ALWAYS sick." Don't let this defeat you. You can help your friends understand by using THE SPOON THEORY. I've used this for a few of my friends and it's helped. I actually had some of them come back and apologize to me. Please read it, it's a great article. They also have a page on Facebook.

8. Don't give up (Tracy)! We all have rough patches that knock us down. However, get right back up and keep fighting! Lean on others for support.



9. You are NEVER alone! Find someone that you can talk and join a support group. My suggestion would be the Stronger Than GP Support Group (http://www.facebook.com/groups/strongerthanGP/) Feel free to add me as a friend. We, the admins and myself, get what you're going through. We're here to help.

10. Be patient (Judy)! While there is no cure for GP/DTP, we have good days and bad days. Sometimes, the bad outweighs the good, but it will pass. If you are having GP attacks, be patient and try some deep breathing exercises. The one that was suggested to me at Mayo is called Diaphragmatic Breathing and an instruction video can be found HERE.

11. Stay hydrated (Judy)! If you let yourself get dehydrated, that opens a whole new can of worms. You'll have terrible headaches, dizziness, fatigue, and maybe worse. Even if you are vomiting, try to suck on ice chips or if you can tolerate it, sip on Pedialyte. Stay away from Gatorade, speaking from personal experience. It's full of sugar that won't sit well on your stomach and then you'll have very interesting colored vomiting. If you don't stay hydrated, you'll end up on an IV in the ER, and that's miserable. Don't torture yourself.

12. Try and take liquid or melt away vitamins (Judy). I am currently dealing wtih a vitamin deficiency because my body is malnourished due to starvation. This just digs you into a hole and once you're there, it's hard to climb back out of it. Try Flinstone's chewables, vitamelts, or liquid vitamins. Stay away from things like gummy vitamins because they'll just sit in your stomach, undigested. I have recipes that are GP friendly, including juicing recipes at PINTEREST.

13. Lean on family (Julie). I know some people have families who aren't supportive because they think that the illness is in your head, still. Don't give up on trying to help them understand. Use the Spoon Theory (mentioned above). This is one of those situations where you will find out who your true friends are. If you lose friends like I did, then they weren't really your friends to begin with and now you have room to make new ones.

14. Praying/religious support (Lyndsay). If you are religious then prayer, faith, and emotional support from church members will help you through this. You can also seek emotional guidance from a priest to help you on your journey.

15. Keep yourself happy (Monica)! This is really important for your well being. If you need ways to cope with GP or distractions from the pain, please check out a previous entry I wrote by clicking HERE. It contains lots of ideas that you can use for inspiration. I like to write, distract myself with my favorite TV shows, and listen to music.

16. Keep looking until you find the right doctor (Nikki). Nikki writes, "don't forget that they work for you!" She's right. Keep searching until you find the doctor who is right for you. Find someone you can trust that will listen to you. I've gone through about ten GI doctors and I'm still having issues finding one that I can trust to listen to me. Don't get discouraged. The right doctors are out there.

17. Take advantage of the good days (Jessica). Good days with GP can be few and far between. So, take every minute of a good day and enjoy it! I've had one or two good days recently, so I milked it for all it was worth!

18. Snap out of Denial. We all go through it. I've eaten foods that I shouldn't have a few times because I really did believe when I was first diagnosed that it was all in my head. After I ate, however, the gastric spasms hit with a vengeance! LaShelle has written out the GP diet that was given to her at Mayo. You can ask her for it.

15. Dealing with Hypoglycemia. I use Shok Blocks because they work quickly and they don't taste that badly. The link to the Shok Blocks on Amazon is HERE.



I hope this article will make your transition to living with GP a little easier. If I may have missed something, please comment below and I will update my entry accordingly. Just remember that it's not in your head. I'm going to conclude with this passage from an unknown author:

I wish you enough sun to keep your attitude bright.

I wish you enough rain to appreciate the sun more.

I wish you enough happiness to keep your spirit alive.

I wish you enough pain so that the smallest joys in life appear much bigger.

I wish you enough gain to satisfy your wanting.

I wish you enough loss to appreciate all that you possess.

I wish you enough hellos to get you through the final good-bye.

-Author Unknown

How to Cope with GP/DTP Pain - Emotionally and Physically

This is a question that I've been asked a lot. I have been doubled over in pain, with no relief in sight. So, how do I cope and what do I do to make the pain easier to handle? I have compiled a list from the members on the GASTROPARESIS FACEBOOK PAGE on how to deal with the emotional and physical pain of dealing with Gastroparesis/DTP.

For the Emotional Pain:

1. Smash Journals (recommended by LaShelle & Melony) - It's kind of like scrapbooking. HERE is a video to help you make your own Smash Journal. Also, HERE is a link to Pinterest for ideas on Smash Journals.

2. Facebook (recommended by Melony) - just writing about your experiences will help in support groups/pages.

3. Writing Poetry (recommended by Melony) - getting your feelings out in the form of writing helps.

4. Pets (recommended by Lora & Sara) - pets are great distractions! Walking your dog or playing with your cat will help take your mind off of things. Lora writes, "it is fairly simple to get a favored pet established as a 'emotional support' animal, thus making it possible to take the pet with you EVERYWHERE (without additional fees when traveling!) That would help those in hospitals, housing issues, travel, etc. There are no actual requirements for training, just need a doctor to fill out the proper paperwork for a certificate. Here's a WEBSITE with a little info on the subject."

5. Drawing (recommended by Sara) - drawing helps to channel your emotions into something positive.

6. Watching Videos (recommended by Sara) - whether you're watching videos on Youtube, Hulu, Netflix, or Amazon, escaping into someone else's world for a while will help you to cope with having GP by distracting you from the pain.

7. Breathing Exercises (recommended by Wendy) - Breathing exercises will help relax you. Diaphragmatic Breathing, according to my Mayo Clinic doctor, will help cut down nausea and vomiting. HERE is a link to breathing exercises for relaxation.

8. Exercising (recommended by Angela) - working out can take your mind off of things as well as giving you an energy boost with adrenaline. You can do anything from yoga to jogging, just be careful.

9. Prayer/Meditation (recommended by Angela & Dominique) - being able to vent your frustrations and to focus on something else will take your mind off of GP/DTP.

10. Reading (recommended by Heather) - reading and escaping into someone else's life/story will help you to overcome some of the pain you're in.

11. Listening to music/singing (recommended by Ariella) - listening to music will channel some of your emotional turmoil into fun. Play Rockband, Guitar Hero, or just do some good ole Karaoke to make yourself feel better.

12. Watching Your Favorite TV Show (recommended by Regina) - "I watch The Talk. Those ladies, I just love, they help me though this stress."

13. Surfing the Net (recommended by Mariella) - Mariella writes, "When I'm having good days I try to keep my mind occupied getting on the computer and catching up on the things I couldn't do while I was down..."

14. Going to Concerts (recommended by Tanya) - Tanya writes, "I also enjoy going to local shows, because I have a lot of friends who are in bands with these genres of music. Being there with my friends & listening to them do their passion always seems to help me cope with the stresses of GP."

15. Art Therapy (recommended by Nico) - "As an expressive medium, art can be used to help clients communicate, overcome stress and explore different aspects of their own personality." More on Art Therapy can be found HERE.

16. Playing Video Games (recommended by Melissa) - Her son plays video games to cope with the stress and pain. This is one of my favorite ways to cope with GP/DTP. I usually put in a zombie game and take out all of my stress on the zombies. It sounds goofy, but playing a first person shooter really helps you channel the stress you are dealing with daily. It really does help.

17. Knitting - Knitting is one of my favorite things to do. It keeps my hands busy and distracts me for a bit. I learned how to knit with the KNIFTY KNITTER. You can buy one on AMAZON or pick one up in the Craft Section of Walmart.



For the Physical Pain:


1. Heating Pad (recommended by Melissa) – The heat from the heating pad will help the gastric spasms to calm down.

2. Sucking on Pickled Ginger (recommended by Ariella) – Ginger has been known to help with stomach issues. It’s an old remedy that helps.

3. Sip on Calming Teas (recommended by Domonique) – Sipping on hot teas can both soothe your burning throat and your stomach. Ginger tea and Peppermint teas are recommended.

4. Long Bath (recommended by LaShelle & Diana) – Diana writes, “I also take long hot baths and read in the tub. it's relaxing and soothing.” You can also add Epsom salt to your bath to help with gastric spasms. Epsom Salt can be found in your pharmacy’s first aid section. LaShelle, the GNE Page Creator, has a tip for those of you who want to take relaxing baths, “I use epsom salt and/or Milk and honey baths (which you can find in packages at Walmart). There are some natural herbal remedies you can try but for right now, there isn't much else that fits our needs.”

5. Keep a Food Diary/Journal - this will help you keep track of when you ate, how much you ate, what time you got sick, etc. A pattern might emerge that will help you better gauge when you should eat and what you should eat.

The MAYO CLINIC writes,

“Treating gastroparesis begins with identifying and treating the underlying condition. For instance, if diabetes is causing your gastroparesis, your doctor can work with you to help you control your diabetes. Beyond this, other gastroparesis treatments may include: Changes to your diet Your doctor may refer you to a dietitian who can work with you to find foods that are easier for you to digest, so that you're more likely to get enough calories and nutrients from the food you eat. A dietitian might suggest that you try to: Eat smaller meals more frequently. Eat low-fiber forms of high-fiber foods, such as well-cooked fruits and vegetables rather than raw fruits and vegetables. Choose mostly low-fat foods, but if you can tolerate them, add small servings of fatty foods to your diet. Avoid fibrous fruits and vegetables, such as oranges and broccoli, that may cause bezoars. If liquids are easier for you to ingest, try soups and pureed foods. Drink water throughout each meal. Try gentle exercise after you eat, such as going for a walk. Some people with gastroparesis may be unable to tolerate any food or liquids. In these situations, doctors may recommend a feeding tube (jejunostomy tube) be placed in the small intestine. Feeding tubes can be passed through your nose or mouth or directly into your small intestine through your skin. The tube is usually temporary and is only used when gastroparesis is severe or when blood sugar levels can't be controlled by any other method. Medications Medications to treat gastroparesis may include: Medications to control nausea and vomiting. Anti-emetic medications include prochlorperazine (Compro), diphenhydramine (Benadryl, Unisom) and lorazepam (Ativan). Medications to stimulate the stomach muscles. These medications include metoclopramide (Reglan) and erythromycin. There is a risk of serious side effects with these medications, so discuss the benefits and risks with your doctor. Surgery If treatment doesn't help control your nausea, vomiting or malnutrition, you may consider gastroparesis surgery. During surgery, the lower part of the stomach may be stapled or bypassed to help improve stomach emptying. Experimental treatments Researchers are working on new ways of treating gastroparesis, such as: Injecting a nerve toxin to allow the stomach to release food. Botulinum toxin type A (Botox) is a nerve toxin most commonly known for its use in treating skin wrinkles. Researchers have found that Botox injections relax the pyloric muscle in some people, thereby allowing the stomach to release more food into the small intestine. The benefits are temporary, however, and more studies are needed to determine the overall usefulness of this treatment. Implanting an electrical device to control the stomach muscles. Electrical gastric stimulation uses an electric current to cause stomach contractions. Working much like a heart pacemaker, this stomach pacemaker, consisting of a tiny generator and two electrodes, is placed in a pocket that surgeons create on the stomach's outer edge. Stomach pacemakers have been shown to improve stomach emptying and reduce nausea and vomiting in some people with gastroparesis, but more studies are needed.”">Mayo Clinic writes, “Treating gastroparesis begins with identifying and treating the underlying condition. For instance, if diabetes is causing your gastroparesis, your doctor can work with you to help you control your diabetes. Beyond this, other gastroparesis treatments may include:

Changes to your diet
Your doctor may refer you to a dietitian who can work with you to find foods that are easier for you to digest, so that you're more likely to get enough calories and nutrients from the food you eat. A dietitian might suggest that you try to:
Eat smaller meals more frequently.
Eat low-fiber forms of high-fiber foods, such as well-cooked fruits and vegetables rather than raw fruits and vegetables.
Choose mostly low-fat foods, but if you can tolerate them, add small servings of fatty foods to your diet.
Avoid fibrous fruits and vegetables, such as oranges and broccoli, that may cause bezoars.
If liquids are easier for you to ingest, try soups and pureed foods.
Drink water throughout each meal.
Try gentle exercise after you eat, such as going for a walk.
Some people with gastroparesis may be unable to tolerate any food or liquids. In these situations, doctors may recommend a feeding tube (jejunostomy tube) be placed in the small intestine.

Feeding tubes can be passed through your nose or mouth or directly into your small intestine through your skin. The tube is usually temporary and is only used when gastroparesis is severe or when blood sugar levels can't be controlled by any other method.

Medications
Medications to treat gastroparesis may include:
Medications to control nausea and vomiting. Anti-emetic medications include prochlorperazine (Compro), diphenhydramine (Benadryl, Unisom) and lorazepam (Ativan).
Medications to stimulate the stomach muscles. These medications include metoclopramide (Reglan) and erythromycin. There is a risk of serious side effects with these medications, so discuss the benefits and risks with your doctor.

Surgery
If treatment doesn't help control your nausea, vomiting or malnutrition, you may consider gastroparesis surgery. During surgery, the lower part of the stomach may be stapled or bypassed to help improve stomach emptying.

Experimental treatments
Researchers are working on new ways of treating gastroparesis, such as:
Injecting a nerve toxin to allow the stomach to release food. Botulinum toxin type A (Botox) is a nerve toxin most commonly known for its use in treating skin wrinkles. Researchers have found that Botox injections relax the pyloric muscle in some people, thereby allowing the stomach to release more food into the small intestine. The benefits are temporary, however, and more studies are needed to determine the overall usefulness of this treatment.
Implanting an electrical device to control the stomach muscles. Electrical gastric stimulation uses an electric current to cause stomach contractions. Working much like a heart pacemaker, this stomach pacemaker, consisting of a tiny generator and two electrodes, is placed in a pocket that surgeons create on the stomach's outer edge. Stomach pacemakers have been shown to improve stomach emptying and reduce nausea and vomiting in some people with gastroparesis, but more studies are needed.”

Medication List that Makes Gastroparesis/DTP Worse

Jeannie from the GASTROPARESIS Facebook Page contributed to this list.

These are the medications that can make Gastroparesis and DTP worse.

NARCOTICS
Lortab
Norco
Vicodin
Dolophine
Methadose
Morphine
Avinza
Kadian
MS Cotin
Oxycodone
Oxycontin
Percocet
Percodan
Tramadol
Ultram

DOPAMNE AGONISTS
Abilify
Phencyclidine
Quinpirole
Salvinorin A
Apomorphine - Apokyn
Bromocriptine - Parlodel
Cabergoline - Dostinex SR
Ciladopa
Dihydrexidine
Dinapsoline
Doxanthrine
Epicriptine – Similar to Bromocriptine
Lisuride

TRICYCLIC ANTIDEPRESSANTS
Amitriptyline
Amoxapine
Desipramine
Doxepin
Trofranil – Trofranil PM
Maprotiline
Pamelor
Vivactil
Surmontil
Lithium
Zyprexa

CALCIUM CHANNEL BLOCKERS
Amlodipine
Norvasc
Amlodipine & Atorvastatin - Caduet
Amlodipine & Benazepril – Lotrel
Amlodipine & Valsartan – Exforge
Diltiazem – Cardizem, Dilacor, Taztia, Tiazac
Felodipine
Isradipine
Nicardipine – Cardene
Nifedipine – Adalat, Procadia
Nisoldipine – Sular
Verapamil – Calan, Isoptin
Simvastatin – Zocor

Clonidine
Progesterone

I want to add some of my own that the Mayo Doctor told me to stop taking because they do effect motility:

Bentyl (Dicyclomine)
Levsin (Hycosimine)
Zoloft (makes vomiting worse)
Nortriptilyne
Dexilant

My entry about my first visit with the Mayo Clinic is HERE.

So, if you are on any of these drugs, check with your GI doctor and see if there is something else that you can take. Also check the side effects of your medicine to make sure that nothing will make your symptoms worse.

Source can be found HERE.

Follow Up with my Regular GI Doctor

Here's what's interesting about doctors, they always have conflicting opinions. The GI doctor read the notes of the Mayo Doctor right in front of me and he mentioned to me that he disagreed and didn't think the NISSEN SURGERY would help me at all. He said that I've been on acid reflux medication for years. The only way this stomach surgery would work, in his words,

If you came to me saying that you had acid reflux and the medicine worked for you but you were tired of taking pills, then I'd do the surgery. But, as of now, you only have a 10 to 20% chance of it working. You need to come back to me before they do any kind of surgery on you because it's not going to work.

I trust him and trust his judgement. Instead, he wants me to follow up with Mayo, have some blood work done (because my lipase levels have been really high), and come back to him to talk about what to do next. He suggested a procedure called ESOPHAGEAL MANOMETRY. Basically, it's a procedure that involves a tube going into your nose and into your stomach for 24 hours. It tests the vomiting to determine if it is stomach acid or actual vomit.

However, his opinion seems to be that my lower bowels are paralyzed or have lack of motility, not my stomach itself. I'm starting to think that too - but nothing seems to go down. Everything seems to come back up. However, my belly was really swollen when I saw him today. On the scale it looked like I had gained weight because my stomach is so bloated, it looks like I'm carrying around a watermelon. I haven't eaten hardly anything but I have been drinking a lot of water. He noticed the bloating too because I am usually lighter on the scale and my face has thinned out.

If you look at pictures of me from last year or the year before compared to now, my face has really thinned out. I've lost a pants size.

He called in stronger anti-nausea medicine for me. I hope that will bring me some relief. This past week has been horrible but I remain optimistic. Something good has to come from all of this. That's going to be my advice for the day:

Be your own advocate. Research things and don't always do whatever the doctor tells you. But, hang on to hope because it's there. Someone will figure this out - and when they do, we're going to throw one hell of a party! =)