Gastroparesis is also often referred to as delayed gastric emptying. The term “gastric” refers to the stomach. Usually, the stomach voids its contents in a disciplined fashion into the small intestine.
Gastroparesis is also often referred to as delayed gastric emptying. The term “gastric” refers to the stomach. Usually, the stomach voids its contents in a disciplined fashion into the small intestine. In gastroparesis, the muscle contractions that allow the food to move along the digestive tract do not function normally and the stomach does not empty quickly enough. Gastroparesis is defined by long-term symptoms combined with postponed stomach emptying in the absence of any observable obstruction or blockage. The delayed stomach emptying is confirmed by a test.
What causes gastroparesis?
The cause of gastroparesis is often unclear. However, it has been observed that in many cases, gastroparesis is caused by damage to the vagus nerve (an important link from the gut to the brain.)
The vagus nerve is responsible for managing the intricate mechanisms in your digestive tract, including communicating to the muscles in your stomach when to contract and move food into the small intestine. An impaired vagus nerve cannot signal normally to your stomach muscles. This causes food to remain in your stomach for a longer period of time, rather than pushing into your small intestine to continue the digestion process.
Factors that cause vagus nerve damage can be attributed to diseases, such as diabetes, or by surgery to the stomach or small intestine.
Who is at risk of gastroparesis?
• People with diabetes
• People who have had abdominal or esophageal surgery
• People who have suffered an infection, or a virus
• Certain medications can slow the rate of stomach emptying, such as narcotic pain medications
• People with scleroderma (a connective tissue disease)
• People with nervous system diseases, such as Parkinson's disease or multiple sclerosis
• People with hypothyroidism (low thyroid)
• Women are more likely to develop gastroparesis than men
Signs and Symptoms
It is important to understand that many people with gastroparesis don't show any observable signs or symptoms. However, if you are showing signs of the following symptoms, consult your physician:
A feeling of fullness after eating just a few bites
Vomiting undigested food eaten a few hours earlier
Changes in blood sugar levels
Lack of appetite
Complications of gastroparesis
Severe dehydration: Frequent vomiting can contribute to dehydration
Malnutrition: Lack of appetite leads to low caloric intake, and results in an inability to absorb enough nutrients.
Undigested food that hardens and remains in your stomach: Foods that remain undigested in the stomach can solidify into a hardened mass called a bezoar. These solid masses cause nausea and vomiting and can be life threatening due to the prevention of digestion.
Unpredictable blood sugar changes: Gastroparesis does not directly cause diabetes, however it can lead to irregular changes in blood sugar levels. This can aggravate an existing case of diabetes and make it more difficult to manage.
Decreased quality of life: Gastroparesis flare ups can cause discomfort and affect an individual's ability to perform normal day to day activities.
Tests and Treatment
Physical exams will be performed by a doctor if gastroparesis is suspected. Inform your doctor about any medications you are taking. A test that measures how fast the stomach empties is done to confirm the diagnosis. The following tests are performed by doctors to help diagnose gastroparesis and rule out conditions that may cause similar symptoms. Tests may include:
Gastric emptying study:
This is a vital test in diagnosing gastroparesis. It involves eating a light meal that has a small amount of radioactive material. The radioactive material is monitored by a scanner that identifies its movement. This enables the doctor to monitor the rate/speed of gastric emptying.
You'll need to stop taking any medications that could slow gastric emptying. Ask your doctor if any of your medications might slow your digestion.
Upper gastrointestinal (GI) endoscopy:
This process is done to examine your upper digestive system — your esophagus, stomach and beginning of the small intestine (duodenum). A microscopic camera is placed on the tip of a long, malleable tube. This procedure can also diagnose other digestive conditions, such as peptic ulcer disease or pyloric stenosis, which all have similar symptoms to gastroparesis.
This procedure uses sound waves to develop images of masses within your body. Ultrasounds assist in diagnosing whether problems with your gallbladder or your kidneys could be the root of your symptoms.
Upper gastrointestinal series:
This is a series of X-rays in which you drink a white, chalky liquid (barium) that coats the digestive system to help abnormalities show up.
The first step in treating gastroparesis is treating the root cause or underlying condition. If it is diabetes your doctor will work with you to control it. A dietitian might suggest that you try to:
Eat smaller meals more frequently
Chew food thoroughly
Eat well-cooked fruits and vegetables rather than raw fruits and vegetables
Avoid fibrous fruits and vegetables, such as oranges and broccoli, which may cause bezoars
Choose mostly low-fat foods, but if you can tolerate them, add small servings of fatty foods to your diet
Try soups and pureed foods if liquids are easier for you to swallow
Drink about 1 to 1.5 liters of water a day
Exercise gently after you eat, such as going for a walk
Avoid carbonated drinks, alcohol and smoking
Try to avoid lying down for 2 hours after a meal
Take a multivitamin daily
Medications for gastroparesis:
Medications to treat gastroparesis may include:
Medications to stimulate the stomach muscles
Medications to control nausea and vomiting
Surgical treatment for gastroparesis:
Unfortunately, in severe cases, some patients may be unable to handle any food or liquids. In these instances doctors may recommend a feeding tube (jejunostomy tube) be inserted in the small intestine.
Doctors may also recommend a gastric venting tube to help alleviate pressure from gastric build-up. Feeding tubes can be passed through your nose or mouth or directly into your small intestine through your skin. This procedure is usually temporary and is only used when gastroparesis is severe or when blood sugar levels can't be managed any other way. Some individuals may require an IV (parenteral) feeding tube that goes directly into a vein in the chest.
Lifestyle and home remedies for gastroparesis:
If you're a smoker, stop. Your gastroparesis symptoms are less likely to improve over time if you keep smoking. People with gastroparesis who are overweight are also less likely to get better over time.
According to Minnesota Gastroenterology Clinic, the diet plan below consists of three phases and is designed for people with gastroparesis to help improve the way food passes through the stomach. Talk to your healthcare provider before making any dietary changes.
Phase 1 – Phase 1 is a strict liquid only diet. It consists of nutrient rich fluids that assist in providing caloric intake while putting very little strain on the digestive system.
Phase 2 – Phase 2 builds on Phase 1 by allowing the patient a small amount of fat and fibe. Foods high in fat prevent the stomach from emptying, so fat intake should be limited to 40 grams per day.
Phase 3 – Phase 3 is meant to be a long-term diet for gastroparesis. This phase includes all the foods allowed in Phase 2 and incorporates additional fat and fibrous foods into the diet. Fibrous foods should be cooked well so they are tender and easy to digest and fat intake should be limited to 50 grams per day.
Duration: Each patient is different, and the phasing of the diet should be prescribed and monitored by your physician. Due to the low nutrition content of Phase 1, if a patient needs to remain on this phase for more that 3 days, they may need to also be put on an IV. If your symptoms are still active, check in with your healthcare provider for direction. Phases 2 & 3 can be prescribed for 4-6 weeks at a time as long as the patient is checking in with a Dietitian or healthcare provider every 2-4 weeks.
Below is a list of recommended foods and foods to avoid, developed by the Minnesota Gastroenterology Clinic for people with gastroparesis. Always consult your health care professional before making any changes to your diet if you have gastroparesis.
• Skim and 1% milk • Fat-free and low-fat non-dairy milk substitutes • Fat-free and low-fat yogurt without fruit/seeds • Low-fat cheeses & cottage cheese
• Whole and 2% milk and milk products • Full fat non-dairy substitutes
• Vegetable juice: V-8, tomato • Well-cooked vegetables without skins/seeds/hulls (potatoes without skin, carrots, beets, green beans, squash, asparagus, etc.)
• Raw vegetables • Cooked vegetables with skins/seeds/hulls (corn, peas, broccoli, cauliflower, etc.)
Fruits & Juices
• Juices without pulp: apple, cranberry, grape • Canned fruits without skin • Fresh ripe banana and seedless melon
• Juice with pulp and prune juice • Canned fruits with skins • All other fresh and dried fruits
Breads, Cereals & Grains
• White bread, English muffins, bagels, biscuits, and other refined bread products • Pancakes, waffles, refined dry cereals (Rice Krispies, Corn Flakes, Special K, etc.) • Cooked, refined cereals: Cream of rice, cream of wheat, grits, farina • White rice, white pasta & egg noodles • Saltine, oyster, graham and animal crackers • Pretzels
• Whole grain breads and bread products made with bran, rye with seeds, or whole wheat • Oatmeal, bran cereals, granola, shredded wheat • Brown rice, wild rice, oats, barley, and quinoa, whole wheat pasta • Popcorn • Breads or rolls with nuts, seeds, or fruit
• Gelatin (Jell-O), Popsicles, fruit ice • Sugar, honey, sugar substitutes, jelly and seedless jams, hard candy • Fat-free and low-fat custard, pudding, ice cream, sherbet, and frozen yogurt • Milkshakes made with skim milk or low-fat milk products/non-dairy substitutes
• Full-fat desserts (cakes, cookies, pies, ice cream) • Desserts, jams and candies containing nuts, seeds, coconut, dried fruits, or fruits with skins
• Fat-free or low-fat broth & bouillon • Broth soups with rice/noodles and allowed vegetables • Cream soups made with skim or 1% milk
• Broths containing fat • Soups made with cream, whole or 2% milk
You're likely to first see your primary care doctor if you have signs and symptoms of gastroparesis. If your doctor agree that your symptoms point to gastroparesis, you may be referred to a gastroenterologist ( a specialist in digestive diseases.) You may also be referred to a dietitian who can help you manage your diet plan.
What you can do:
Because appointments can be quick, it's important to be well-prepared. To get ready, try to:
Be aware of any pre-appointment protocols. When you make your appointment, be sure to inquire if there's anything you need to do in advance, such as restrict your diet. The doctor's office might request that you stop using certain medications, prior to coming for an appointment. • Record any symptoms you've experienced, including any that may not seem related.
Write down key personal information, including any major stresses or recent life changes.
Make a list of all medications, vitamins or supplements that you're taking.
Consider taking a family member or a friend with you. It can often be tough to recall all the information provided during an appointment. A friend of family member may be able to help you remember something you forgot down the road.
Questions to ask your doctor if you think you have gastropresis:
Prepare a list of questions ahead of time to ensure that you optimize your time with your doctor or specialist. Take this list of questions to ask your doctor if you're worried you have gastroparesis with you to your next appointment:
What's the most likely cause of my symptoms?
Could any of my medications be causing my signs and symptoms
What kinds of tests do I need?
Is this condition temporary or long lasting?
Do I need treatment for my gastroparesis?
Should I see a dietitian?
What are my treatment options, and what are the potential side effects?
I have diabetes, how will gastroparesis affect my diabetes management?
Gastroparesis is characterized by delayed gastric emptying in the absence of a mechanical obstruction.
Most cases of gastroparesis (more than one-third) are idiopathic, i.e. have an unknown cause. Other common causes are diabetes and postgastric surgery. (Parkman 2015)
Patients with idiopathic gastroparesis are typically young or middle-aged women. (Parkman 2015)
Although the true prevalence of gastroparesis is unknown, US data suggest that it may affect 2% of the general population. (Parkman 2015)
Gastroparesis is associated with psychological distress and poor quality of life.
24% of patients have combined anxiety and depression. (Woodhouse et al. 2017)
Two-thirds of people affected by gastroparesis report having a poor or fair quality of life. (Yu et al. 2017)
Nearly one-third (30%) report they are not working because of the condition. (Yu et al. 2017).
The economic burden of gastroparesis in Canada is unknown.
In the US, mean hospital charges increased significantly by 159% from US$13,350 in 1997 to US$34,585 per patient in 2013, after adjustment for inflation. At the national level, the costs of hospital visits also increased substantially, by 1026%, from $50,456,642 to $568,417,666. (Wadhwa et al. 2017)
Parkman HP. Idiopathic gastroparesis. Gastroenterol Clin North Am. 2015 Mar;44(1):59-68.
Wadhwa V et al. Healthcare utilization and costs associated with gastroparesis. World J Gastroenterol. 2017 Jun 28;23(24):4428-36.
Woodhouse S et al. Psychological controversies in gastroparesis: A systematic review. World J Gastroenterol. 2017 Feb 21;23(7):1298-309.
Yu D et al. The burdens, concerns, and quality of life of patients with gastroparesis. Dig Dis Sci. 2017 Apr;62(4):879-93.
Medications for gastroparesis
Gastroparesis is a debilitating stomach disease for which there is no cure. However, there are a few medications for gastroparesis that may help mask symptoms and make life more manageable.
Despite the debilitating nature of the disorder, gastroparesis is sorely lacking in available resources for patients in the way of education and awareness. So, we (successfully) petitioned this year to make August the official gastroparesis awareness month. In our efforts to raise both funds for research and awareness this month, we also wanted to develop some resources that we felt would be an asset to someone who is newly diagnosed.
CDHF worked together with gastroparesis patient and advocate; Jennifer Ouellette, to put together a list of medications for gastroparesis. This detailed and comprehensive list will walk you through each medication, its uses, the potential side effects, and risks, along with some insights from Jennifer herself.
If you're newly diagnosed and would like a deeper look into what medications for gastroparesis might make an appearance in your treatment plan, feel free to take a read or share with your doctor.
This list of medications for gastroparesis is meant for general information only and is not intended to replace any advice you may have already received from your healthcare practitioner.
12 Medications for Gastroparesis:
Is one of the most commonly prescribed medications for gastroparesis, and usually the first treatment option that is offered. It does pose cardiac risk so it is recommended to have an electrocardiogram before starting and to continue to have cardiac activity monitored while on the medication. It can be used long term but you should be monitored by a doctor while on the medication. It works as an antiemetic and as a gastric prokinetic. It is supposed to help with nausea and vomiting as well as help speed up the gastric emptying time. This is the drug that I was on for 4 times a day for almost 10 years before it stopped working. It kept a lot of my symptoms calm with an occasional flare-up happening every once in a while.
Common Side Effects
Rare but more serious side effects:
breast milk flowing from the nipple
fast, pounding, or racing heartbeat or pulse
swelling of the breast (males)
Do not take domperidone if you:
are allergic to domperidone or any ingredients of the medication
are taking the medication ketoconazole
are taking medications which cause QT prolongation
have bleeding in the stomach or intestines
have a blockage in the stomach or intestines
have breaks in the lining of the stomach or intestines
have a prolactinoma (a tumour of the pituitary gland)
have uncorrected levels of potassium, magnesium, or calcium in your blood
have cardiac disease (e.g., heart failure)
have QT prolongation (a type of irregular heartbeat)
have moderate or severe liver impairment
Metoclopramide (also known as Maxeran or Reglan or Metonia)
Despite some troublesome side effects, Metoclopramide is also one of the more commonly prescribed medications for Gastroparesis. Like Domperidone, it is supposed to help relief nausea, vomiting and also help with speeding up gastric emptying times and also help with reflux. It poses a risk of developing serious side effects such as Tardive Dyskenesia and Neuroleptic malignant syndrome. I was on the liquid form of this medication and started developing neurological twitches that could have turned into Tardive Dyskensia and been permanent. Thankfully for me, they went away after stopping the medication but that is unfortunately not the case for everyone.
Common Side Effects
diarrhea (with high doses)
restlessness or difficulty sleeping
More serious side effects to watch for:
difficulty speaking or swallowing
dizziness or fainting
fast or irregular heartbeat
a general feeling of tiredness or weakness
headache (severe or continuing)
inability to move eyes
increase in blood pressure
lip smacking or puckering
loss of balance control
muscle spasms of face, neck, and back
puffing of cheeks
rapid or worm-like movements of the tongue
signs of depression (e.g., poor concentration, changes in weight, changes in sleep, decreased interest in activities, thoughts of suicide)
stiffness of arms or legs
tic-like or twitching movements
trembling and shaking of hands and fingers
twisting movements of the body
uncontrolled chewing movements
uncontrolled movements of arms and legs
unusual eye movements
a weakness of arms and legs
Do not take metoclopramide if you:
are allergic to metoclopramide or any of the ingredients of this medication
have a condition where faster passage of materials through the stomach might be dangerous (e.g., in cases of stomach bleeding, or breaks in the stomach lining)
Metoclopramide should not be given to children less than one year of age.
The same antibiotic that we use to treat bacterial infections also has a use in treating Gastroparesis. It is typically used at a lower dosage, not the same dosing used for antibiotic treatment with the drug. I was told it shouldn't be used longer than 4 weeks without a break because of side effect risks. It works by helping to stimulate the receptors that assist in making GI contractions and that helps increase motility in the GI tract. This is one of the medications for gastroparesis that was not effective for me when I tried it but I have heard some people have success with it short term.
Common Side Effects:
abdominal or stomach cramping and discomfort
nausea or vomiting
Rare more serious side effects:
continued diarrhea even after you have finished taking this medication
irregular or fast heartbeat
loss of hearing (temporary)
nausea or vomiting (severe)
ringing in the ear
skin rash, redness, or itching
stomach pain (severe)
symptoms of liver damage (e.g., yellow skin or eyes, abdominal pain, dark urine, clay-colored stools, loss of appetite, nausea, and vomiting, or itching)
unusual tiredness or weakness
Erythromycin should not be taken by anyone who:
is allergic to erythromycin, or to any of the ingredients of the medication
is allergic to clarithromycin or other macrolide antibacterial agents
has preexisting liver disease or dysfunction
This is one of the medications for gastroparesis that has been banned in many countries. It is still available to my knowledge in Canada through Health Canada Special Access program. It is severely restricted because of the risk of rare but serious cardiac events associated with the drug. Cisapride works as a gastric prokinetic agent increasing the motility in the GI tract.
Common Side Effects
Rare serious Side effects
Complete Stoppage Of The Heart
Prolonged QT Interval On EKG
Very Rapid Heartbeat - Torsades De Pointes
Discharge Of Milk In Men Or Women When Not Breastfeeding
Increased Prolactin In The Blood
Problems With Bladder Control
Prucalopride (Resotran, Resolor)
This is one of the medications for gastroparesis that was part of the clinical trials held in Calgary. It is primarily used as a drug to help treat chronic constipation in women. It has been used by a lot of people in our Facebook support group, including myself. Some people have responded very well to Resotran. It worked great for me for about 6-7 months and then it stopped working. It helped speed up emptying times for me but the trade-off was a great deal of diarrhea.
Most common side effects:
enlargement of abdomen or stomach
loss of appetite
Rare but serious side effects:
abnormal heart rhythms (such as fast or slow heart rate, palpitations)
pounding, rapid heartbeat (palpitations)
Do not take this medication if you:
are allergic to prucalopride or any ingredients of this medication
have kidney disease that requires dialysis
have serious problems with your digestive system, such as a tear in the wall of the digestive system, a blockage in the digestive system, or inflammatory disease of the intestine such as Crohn's disease or ulcerative colitis
have galactose intolerance or glucose malabsorption (a rare hereditary disease)
This is probably one of the more common antiemetic medications for gastroparesis that is prescribed. It is a drug that is used most often to treat nausea and vomiting associated with chemo or radiation in cancer patients. Many Gastroparesis patients including myself (until they no longer worked) find that this drug works well to help with nausea.
Common Side effects
flushing or feeling warm
low blood pressure
unusual tiredness or weakness
Rare more serious side effects
difficulty moving or abnormal body movement
pain, redness, or burning at place of injection
rapid pounding heartbeat
Do not take this medication if you:
are allergic to ondansetron or any ingredients of the medication
are taking the medication apomorphine
It is an antihistamine used to treat allergies, nausea, and trouble sleeping. They use this medication a lot to help women with morning sickness during pregnancy. I have used it a few times for nausea and it works decently.
Common Side Effects:
ringing in your ears;
dry mouth; or
tired feeling, sleep problems (insomnia).
Rare severe Side effects:
severe drowsiness, weak or shallow breathing;
a light-headed feeling, like you, might pass out;
confusion, agitation, hallucinations, nightmares;
fast or slow heartbeats;
jaundice (yellowing of the skin or eyes);
uncontrolled muscle movements in your face (chewing, lip-smacking, frowning, tongue movement, blinking or eye movement);
easy bruising or bleeding (nosebleeds, bleeding gums);
sudden weakness or ill feeling, fever, chills, sore throat, mouth sores, red or swollen gums, trouble swallowing; or
very stiff (rigid) muscles, high fever, sweating, confusion, fast or uneven heartbeats, tremors, feeling like you might pass out.
It is a new drug being trialed currently with diabetic Gastroparesis patients here in Canada. As I have idiopathic Gastroparesis I have not had a chance to trial this drug as of yet.
I don't have a list of side effects yet as they are still testing the drug. The studies have been promising. Showing so far that there have been no cardiac or neurological side effects which would mean it could potentially be a safer option than some of the other medications out there currently.
Botox injections - (not covered in every province)
This seems to be hit or miss among patients who have tried it. My specialist said for my personal case my Gastroparesis it is too severe and it wouldn't be worth it. As I am not incredibly familiar with how it all works, so here is the official description of its use in cases of gastroparesis:
"While the patient is sedated, the physician will advance a scope through the esophagus, stomach, and the pyloric sphincter. Botox is injected into the pyloric sphincter in an effort to relax that muscle, enabling food to empty from the stomach more easily. It takes approximately 15-30 minutes.
The effects of the botox may be felt immediately or may take some time to begin working. Complications from the procedure include nausea and vomiting from sedatives. Although rare, some report bleeding, perforation of the esophagus, fever, or severe vomiting.
Botox injections are not a permanent solution and usually last no more than 6 months. Repeat injections do not always produce the same results."
It is used to treat IBS-C and to treat chronic (long-term) constipation. It seems to be commonly prescribed for Gastroparesis patients who experience chronic constipation as well. It is usually my go-to medication when I am having issues with constipation and while it causes a bit more pain and bloating it does help with relieving constipation.
Common Side Effects:
loating (swelling or feeling of fullness in your abdomen)
Rare Side effects:
new or worsening abdominal pain
severe diarrhea (persistent watery stools)
Nabilone (synthetic cannabinoids)
Used to treat severe nausea. I know some people in the group have tried this as they can get their insurance to cover the pill form of synthetic cannabinoids but no coverage for actual cannabis. I cannot speak personally about this one as I use actual Medical Cannabis to treat my symptoms.
More Common Side effects:
blurred vision or any changes in vision
clumsiness or unsteadiness
dizziness or light-headedness, especially when rising from a lying or sitting position (more common with high doses)
loss of appetite
loss of muscular coordination
Rare more serious side effects:
changes in mood (including a false sense of well-being)
dizziness or fainting
fast or pounding heartbeat
nervousness or anxiety
sensation disturbance (unusual sensations or changes in sensations)
unusual tiredness or weakness (severe)
Medical Cannabis for Gastroparesis
Is one of the most effective medications for gastroparesis, as far as managing symptoms go. Everyone is going to be different and Cannabis may or may not work for everyone. Finding strains that have proper terpenes to help digestive issues, like Limonene is important when trying to find the best strains to help. This study may be of interest as it is newer research. Hopefully, more research and some clinical trials can happen soon!
With the help of people like YOU, we can raise money and awareness for gastroparesis. Hopefully, in time, new, more effective medications for gastroparesis can be found. Perhaps even a cure!
If you're interested in helping us work towards abolishing this terrible disorder, please head over to cdhf.ca/donation/ today and make a contribution!
What is Gastroparesis Infographic
Gastro-pa- what now?! You're not alone! What is gastroparesis? Sometimes it feels like even the experts don't exactly know! Which is why CDHF has made it one of our goals this year to spread the word and help with awareness initiatives. August is the official awareness month in Canada for gastroparesis, so this year we're putting together as many educational resources as we can to raise awareness about this debilitating disease!
Below is a printable infographic developed by CDHF to help you understand what gastroparesis is. You can print off this resource to hand up in your practice, to hand out at fundraiser events, or to just better explain to your friends and family.
Check out some of our other resources on gastroparesis, including this comprehensive list of medications for gastroparesis.
Jennifer’s Journey with Gastroparesis & Medical Cannabis
Meet Jennifer O. Jennifer has gastroparesis.
She has graciously agreed to share her personal health journey with gastroparesis and medical cannabis in the hopes that you all can learn from her experiences.
My journey with gastroparesis has been a long one full of ups and downs. It was 2005 and I was 18 at the time I was diagnosed. I had to fight so very hard to finally reach a diagnosis of Gastroparesis. It started with what I thought was a stomach flu at the time. I couldn’t keep anything down after I would eat. As time went on it kept getting worse, not better and I was becoming quite concerned. I was starting to lose weight very rapidly and I couldn't keep a single bite of food from coming back up after I would try and eat. I went to see my family doctor and I was very scared at that point. He brushed me off and said it was just acid reflux, gave me a prescription and said to come back in a week if it didn’t get better. So, after a week with zero change and still losing weight I was back in his office. He again, did not listen to me and my concerns and gave me a prescription for a different acid reflux pill and said to come back again if it didn't help.
At this point I had lost close to 30 pounds and was in pretty rough shape.
I went back to see him the following week and refused to leave his office until he actually listened to me and did something about what was happening. It was at that point that he tried to tell me it “was all in my head” and accused me of being bulimic and said I needed mental health help. At that point in my life, I was already in therapy, on medication and getting help for mental health issues, bulimia not being one of them. If he had bothered to ever listen to me or read my file, he would have known that. I screamed and just broke down crying and said he HAD to do something, I wasn’t doing this to myself and I just wanted to be heard; I just wanted help. I was terrified and had no idea what was wrong and was slowly wasting away. He finally agreed to send me over to the hospital, but told me they would not find anything wrong with me.
I was admitted to the hospital, where I spent over three weeks with an amazing gastroenterologist who actually listened to me, acknowledged that something was very wrong and ran every test he could until he found out what was behind all of this.
He was very upset that my family doctor had let me get so bad and brushed me off countless times. At the time, gastroparesis was quite unheard of in my city, so they did not think to check for it until every other test came back negative. The gastric emptying scan finally gave me my answer, my stomach emptying process was quite delayed and I had gastroparesis.
I consider myself extremely lucky that over the years my symptoms remained mild to moderate with some flare-ups and my body continued to respond to the domperidone. Now let’s fast-forward a decade, when everything changed again.
It was as if I were 18 again and starting this cycle all over again.
I ended up hospitalized and that is where I met my new gastroenterologist. He has been supportive and helpful and has been fighting for me. One of the first things he did was repeat my gastric emptying test, which revealed how severe my gastroparesis had become over the years, showing that less than 1% of my stomach was actually functioning now.
We cycled through all of the regular medications, which either didn’t help or I developed horrible reactions to. This continued for a few more months as I progressively became worse. I eventually had to be hospitalized with a temporary nasojejunal (NJ) tube. My gastroenterologist decided to try a medication called Resotran (prucalopride). On release from the hospital, I was responding very well to the medication. This continued for several months; however, flare-ups started again and, without being able to keep medications down, my health was declining once again.
This is where my journey with medical cannabis started.
All the medications had failed me and I was out of options. I had first mention the possibility of medical cannabis to my family doctor, which was a big mistake. He is not a doctor who supports use for it even though he knows there are therapeutic benefits. He would not help me so I moved on to my Gastroenterologist. He was actually quite supportive of my decision to want to try it and at that point I had nothing to lose. He filled out a referral for me to go to the Trauma Healing Center Clinic (it is now called Harvest Medical) to explore Medical Cannabis options. After submitting the referral to the clinic I waited almost 4 months before I was able to be seen. When the day of my appointment arrived I met with a great doctor who listened to me and agreed that Medical Cannabis would more than likely be beneficial in helping me treat my symptoms. I got signed up with an LP and then started exploring the different strains and seeing what worked and what didn't during a trial and error process.
Before I started using Medical Cannabis I was vomiting anywhere between 15-20 times a day and dealt with relentless nausea and pain.
Now, after years of treatment with Medical Cannabis I rarely vomit unless I end up in a bad flare up, the cannabis helps to keep the nausea somewhat manageable and it does help bring my pain levels down a bit. I had been doing research into medical cannabis for a while and continue to do so because I want to learn and have a greater understanding of the plant I am using as medication and the science behind it all. I have come to understand a lot more about different terpenes and cannibinoids and the roles they play in treating our symptoms.
In the past few years since becoming a medical cannabis patient I have been through several different LPs and it is always a trial and error process with each LP to find the strains that work and have the right terpenes for me. That is one of the drawbacks of our current medical cannabis system.
Every LP has different strains, they are all grown differently and can contain varying levels of cannibinoids and terpenes.
There is no one size fits all when it comes to using medical cannabis and it almost always involves a bit of trial and error to find the right strains and dosage to help treat various symptoms. I highly recommend to anyone just starting their journey to use a cannabis journal or an app like Strainprint to keep track of the strains, dosage and effects that you feel and how it helped.
My recommendations for patients that are new to cannabis:
If you are thinking about trying Medical Cannabis go have a chat with your doctor. A lot of doctors are getting on board and becoming more comfortable with recommending cannabis. Other doctors while they may not be supportive they may be able to refer you to a clinic if they aren't comfortable or educated enough on Medical Cannabis. If those avenues don't work and you are under the care of any other doctors try asking them and they may be able to help refer you to a clinic.
If you get to the point where you have seen a doctor and are now approved to order medical cannabis try and do a bit or research before making that first order. Try and find people who are using medical cannabis to treat your illness and ask them what works best for them. Educate yourself about terpenes and how specific ones can help your symptoms. Just remember that everyone is different and not everyone is going to have the same experience even with the same strains. It is a lot of trial and error and that is where I recommend using a Cannabis journal or an app like Strainprint so you can keep track of how each strain affects you and you can figure out from there what is working for you and what isn't. When you are trying it for the first time, no matter how you use it start low and go slow especially if you have zero experience with cannabis.
A Gastroparesis Story
One of our gastroparesis warriors has graciously agreed to share her personal journey with gastroparesis in the hopes that all of you can learn from her experiences. This is her story:
I think I’ve had mild GP flare ups my entire life. I used to sometimes wake up in the night with stomach pain and odd stomach contractions as a kid. I didn’t have nausea but I did, at times, experience getting full quickly. These were very mild symptoms and although I did start mentioning them to my doctor in my 20’s and 30’s, nothing came of it. I had more than one Upper G.I. test, but they never did provide any answers. Then the symptoms would go away again and I’d forget about it.
Then, in my late 40’s the symptoms suddenly started again, but worse. Little did I know, this would turn into one of the worst years of my life. The symptoms began with waking in the night with those odd stomach contractions again and pain. I started to get the early fullness when eating and then terrible indigestion about 20mins later. Soon I’d start feeling nausea pretty much all day long. Not severe enough to think I might vomit, but enough to make me feel miserable. I began to look at what I was eating and tried to stick to simple foods. But it seemed like anything I ate had the same effect.
My family physician put me on a proton pump inhibitor (Nexium) and I ate according to a diet for those with heartburn or GERD. I had high hopes for this medication, but after many months of taking it, I realized it wasn’t doing anything at all to help. My symptoms began to get worse and my doctor referred me to a Gastroenterologist. Unfortunately I couldn’t get in for 6 months—an excruciating long time when you are suffering as I was.
During that 6 months of waiting, I began to deteriorate. As I continued to cut out foods from my diet that I blamed for causing symptoms, I was eating very little. Plain rice cakes (if I was having an ok day I might put cucumber slices on them), warm white rice, sometimes smoothies—although often I had to sip on one all day as I couldn’t take a whole one at once. Occasionally, warm broth (as low fat as possible). I felt I couldn’t tolerate any fat, too dense or sugar. Some days I seemed to be able to tolerate a food and then the next day not. Naturally I lost a large amount of weight. I was down to below 90 lbs at the worst of times and menstruation stopped completely.
The worst of all though, was the anxiety that I developed during this time. I was very close to having a panic attack several times. I’d never experienced this before and I was terrified that I could not control it. Naturally this made my symptoms even worse and it started to affect my social life. I was afraid to go anywhere in case I’d suddenly feel ill. If I was persuaded to go out, I’d begin to get ill right before we were about to leave. The same thing would happen before mealtimes. I began to have an aversion to eating, knowing I’d feel awful afterwards, even though I was so hungry.
During this time I began to see a Naturopath. Although I knew he wouldn’t be able to “cure me” I was hoping he might have some ideas on what I could eat. In the end he provided a most valuable thing, he taught me deep breathing and relaxation exercises. Belly breathing, while lying down and relaxing every muscle helped me immensely—both physical and mental. I did my best to practice these breathing techniques while walking and at work. Sometimes my anxiety got the best of me though—more often on days with bad symptoms.
Shortly before my referral appointment, my family doctor suggested I start taking an anti-anxiety/antidepression medication (Pristiq). I was terrified to try it in case it would make my stomach even worse. I did agree to try and it I actually felt like it made a positive effect on my stomach symptoms. I definitely still had very bad days, but I also had good symptom days—which were pretty non-existent before.
The time for my Gastroenterology referral finally came. I had my husband come with me as I was feeling so fragile and emotional; I wanted a second person there to hear what the doctor said. As soon as he started asking me questions I began to cry. I think at some point he either asked me if I had anxiety or I told him I did. Unfortunately he got stuck on this and continued to ask about anxiety. At the end of our meeting he said that since I’d lost so much weight, he would do several tests but that he didn’t think they would find anything. He then suggested I continue with the anxiety medication. He was very kind as he was talking to me, and I left there feeling like he was right. That I caused all of these symptoms because I’m a worry wart, prone to anxiety. I did this to myself.
I told my family, friends and my family doctor that it was all caused by anxiety. I tried harder to use the breathing and relaxation techniques to “cure” myself.
During the next few months I went for several tests, ordered by my Gastroenterologist: an Upper G.I., endoscopy and lastly a stomach emptying test. It was the stomach emptying test that finally diagnosed the gastroparesis. I remember my family doctor calling me in and telling me the test results. She said “Just so you know, it wasn’t all in your head.”
When I met with my Gastro specialist again, he explained gastroparesis to me. I don’t have diabetes or any damage to my vagas nerve that they could find, so my gastroparesis was deemed idiopathic. He sent me for a referral to a dietician and gave me a prescription for Domperidone.
Just finding out the diagnosis and finally getting support helped my condition immensely. I continued to work on relaxation and breathing. The Domperidone seemed to help and I slowly began to eat more food according to the diet that was suggested. I got a lot of great help and advice from the website “Living Well with Gastroparesis”. It was really the only support out there at the time and was much better than what I received from the doctor.
I still had bad days and good days but the medications were helping and I finally got my hope back. I started to do guided meditation for about 15 mins before every meal, to help avoid my anxiousness around eating. I also began to see a counsellor to help me learn how to cope with anxiety and feelings of panic.
It took many months but my gastroparesis resolved. I understand now that this can spontaneously happen for some people, but not all. Occasionally I have mild flareups. This often can be attributed to hormonal fluctuations or something like eating badly for several weeks (like before Christmas!). I still have to be careful what I eat. I avoid anything deep fried or eating a lot of dense meat. I’m generally a vegetarian. I had a stomach flu a couple of years ago that caused a big flareup. It scared me but I went back to my Domperidone and breathing techniques to get me through it.
If there is anything I would like to change it would be for medical professionals to do a much better job of recognizing and supporting the mental health of those with chronic diseases. Some doctors see the anxiety and never look past it, assuming the anxiety caused the disease. Most of the time, it’s the other way around. As well, wait times are far too long for problems like this. I would have never deteriorated as far as I did, both mentally and physically, if I hadn’t had to wait for so long to be diagnosed.
I’m so thankful to the Canadian Digestive Health Foundation for their hard work lobbying to get GP more recognition and making such a helpful website with so many good resources. Because this is the type of problem that is so personal to each patient, I’m also so happy to see new options, like cannabis, becoming available for people to try. Who knows, I may need them again someday.
Tips for Living with Gastroparesis
In celebration of gastroparesis month this year, we asked one of our biggest advocates for the cause, Jennifer, to share some of her tips for living with gastroparesis. Gastroparesis is a terrible disease for which there is no cure. However, our hope is to help you navigate your diagnosis with the advice of someone who was 'been there, done that!' Check out these 4 tips for living with gastroparesis!
1) Take things one day at a time.
It is going to feel very overwhelming when you are first diagnosed. It is going to take a lot of trial and error to find out what you can and can't eat. I highly recommend keeping a food journal when starting out so you can see how you tolerate different foods. CDHF has a great app that you can download if you have an iPhone to help you keep notes and track your symptoms as well.
Everyone is different and something that may be well tolerated by one person may not be tolerated at all for another person. Generally speaking, higher amounts of fiber are usually not tolerated well with gastroparesis and can cause serious issues with our stomachs. Try and avoid foods that are high in fat and avoid the skin of fruits and vegetables as that can be harder for the stomach to break down. You can still try and see what fruits and vegetables you may be able to tolerate just remove the skins and cook well (having them cooked to a state that is a bit mushier can make it easier to digest).
Some things that I have found helpful personally was to make my own electrolyte drinks so I am not always relying on things like Powerade and Gatorade. You can make alternatives to things like Boost or Ensure with ingredients that you can tolerate. Try and learn to make your own both broth. It can be vital to have it on hand when eating food is difficult and it provides a ton of essential vitamins and minerals. I use Ginger Candies a lot to try and help with nausea. I find either Gin Gin or chimes brands work the best for me.
3) Don't give up on finding the right medication for you
There are not a lot of medication options for treatment but don't give up if the first medication that is prescribed for you doesn't work. Not all medications are going to work for everyone but you may be able to find one or a combination of a few different medications that could help to ease the symptoms of Gastroparesis. If you are finding that you have gone through most of the traditional medications and nothing is working or if medications stop working, don't be scared to look into medical cannabis as a potential treatment option. A lot of us, including myself, who have had all treatment options fail have started to turn to medical cannabis to help treat symptoms. With the proper strains and terpenes, a lot of patients are finding that it is helping them control nausea, increase appetite and vomit less frequently. It can also be helpful for the abdominal pain that a lot of us get with Gastroparesis.
3) Develop a strong support group
We have a wonderful online support group on Facebook. A lot of us can experience isolation because of this disease. It can be incredibly overwhelming to try and go through everything without a support system. Unfortunately, not all of us have supportive friends and family and that can leave us in the dark trying to deal with it all alone. Without a support system in place, that burden and stress can wreak havoc on our bodies and minds and make things much harder than it needs to be.
I spend a lot of time on Twitter searching Gastroparesis related stuff, in turn, I end up finding other people with Gastroparesis and it makes it easy to connect with others who are experiencing similar things. Having something like our online support group you have a ton of people who truly understand what you are going through with this awful disease and are there to listen and offer advice if we can. Knowing that there is a network of people that you can depend on to be there for you can help so much.