Gastroparesis. Digestive tract paralysis. A Paralyzed stomach. Gastroparesis, however you define it, fucking sucks. And I do not say that lightly. It both literally and figuratively sucks. It figuratively sucks in the way that the flu sucks. It literally sucks the entire life essence out of you after you’ve dealt with it enough. Gastroparesis is not something I would wish upon my worst enemy. (Okay, maybe Donald Trump or Doug Ford because they deserve every second, but I digress.)
According to G-PACT, 1 in 25 Americans suffers from gastroparesis. Despite such a large number of people suffering from this disease, there are very limited treatment options and as of right now, no cure. The medications that we are given usually only treat the symptoms and very often do little to treat the underlying problem. Some known treatment options include medications such as Domperidone, Metoclopramide, Gravol, and sometimes hypertension medications (as the pain and stress of GP can send your blood pressure sky rocketing sometimes). Other options include surgical procedures such as IV nutrition, and gastric pacemakers, to name a couple.
Here is a list of common gastroparesis symptoms, just so you can get an idea of what I’m talking about here:
Early Satiety after a few bites of food
Nausea (especially after eating)
Vomiting (often undigested food from hours or even days before)
Abdominal Pain
Hiccupping
Excessive Belching
Bloating
Weight Gain
Weight Loss
Loss of Appetite
Malnutrition
Dehydration
Heartburn or gastroesophageal reflux which is not controlled by acid suppressants
Erratic blood glucose levels
There are many different causes of gastroparesis, although the connection between disorders is not completely apparent in many scenarios.
Diabetes is the most common cause.
Abdominal surgery, such as nissen fundoplication, gastric bypass surgery, gallbladder removal. Surgery may injure the vagus nerve which is responsible for causing the stomach muscles to contract, pushing food out of the stomach. If the vagus nerve is damaged, it becomes paralyzed and is unable to perform this function. In some instances, post-surgical gastroparesis is temporary and the stomach returns to normal after healing.
Neurological disorders
Neuromuscular disorders
Mitochondrial diseases, affects at least three major organs and can explain why a person may have a number of seemingly unrelated problems Rheumatoid or immune deficiency disorders (scleroderma, lupus)
Idiopathic (no known cause)- common suspect in idiopathic cases is viral. If caused by a virus, the GP may reverse itself over time.
Eating disorders (Anorexia Nervosa, Bulimia). Gastroparesis often improves once food intake and eating schedules normalize. This is often due to the stomach muscle weakening because of lack of use. A blockage caused by ulcers and/or tumors could imitate gastroparesis.
Temporary gastroparesis can be caused by certain medications such as narcotics and some IBS drugs including levsin and bentyl, calcium channel blockers and certain antidepressants
Endocrine disorders
Cancer and/or radiation treatment and some types of chemotherapy
Viruses can cause gastroparesis. In many cases, post-viral gastroparesis will resolve within 6 months to 2 years.
The U.S. National Library of Medicine (http://www.nlm.nih.gov/) Johns Hopkins (www.hopkins-gi.org), and Mayo Clinic (www.mayoclinic.com) are a few great sources of reference for Gastroparesis.
To sum it up, it’s not very fun. 0/10. Do not recommend. Here are some treatment options (that I am literally just cutting and pasting from g-pact.org)
MEDICATIONS:
Aciphex- Used for GERD.
Ativan - used to control nausea, but causes extreme drowsiness.
Bethanechol - Used to stimulate esophageal motility.
Compazine- Used to control nausea, but can cause drowsiness, restlessness, etc.
Domperidone- Not FDA approved, but still available at compounding pharmacies in the US, or in other countries. It may cause a prolonged QT interval on the EKG which can lead to sudden cardiac arrest, especially when used in conjunction with certain other medications.
Erythromycin- Often used for motility, but typically is not very effective especially if not taken with nausea meds. It may cause a prolonged QT interval on the EKG which can lead to sudden cardiac arrest, especially when used in conjunction with certain other medications.
Marinol- Approved Marijuana drug that is given to chemo patients or others with severe nausea.
Nexium- Used for GERD as well as for healing an esophagus damaged by acid.
Periactin (cyproheptadine)- Used to relax the pyloric sphincter and as an appetite stimulant.
Promethazine- Used for nausea, but can cause drowsiness and restlessness.
Prevacid, Prilosec- Used for GERD .
Reglan- Used for nausea relief and to increase motility. Unfortunately, it is not very well tolerated by many patients and currently has a black-box warning from the FDA.
Tricyclic Antidepressants (Elavil, nortriptyline, etc)- in small doses, these can help with nausea.
Zofran- Used for nausea.
BOTOX:
Botox, the same treatment used for treating wrinkles, is often effective in treating gastroparesis as well. It is a less invasive procedure operating on the same idea as a pyloroplasty. Botox is given locally so side effects are not common.
Preparation: Botox is injected during an endoscopic procedure. The patient must remain NPO after midnight the night before the procedure.
Before the procedure: The patient will be instructed to arrive at the hospital approximately 30-60 minutes before the actual injection is scheduled. He/she will be given an IV, placed on a heart monitor, and receive oxygen throughout the procedure. Once ready, the patient will be taken from the holding room to a procedure room where he/she will be instructed to lay on his/her left side and then given IV sedation.
During the procedure: While the patient is sedated, the physician will advance a scope through the esophagus, stomach, and to 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.
After the procedure: The patient will return to a holding area to recover from the IV sedation. Once he/she is able to sit up and tolerate a small amount of fluid, the patient will be discharged into the care of a family member. Driving is restricted for 24 hours.
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.
ENTERRA:
Enterra® Therapy, also known as the gastric electrical stimulator (GES), is an implantable device used to help stimulate the smooth muscles of the stomach in patients with refractory gastroparesis who have failed all drug treatment options. It may be placed either laparoscopically or through a laparotomy depending on the need of the patient.
Enterra was approved by the FDA in 2000 for use as a humanitarian device in cases of idiopathic or diabetic Gastroparesis. This means it is only available in certain hospitals which have been reviewed and approved to perform the procedure. Because it is humanitarian in nature, it is often not approved by insurance companies or the approval process can be complicated. Medtronic reps are available to assist in getting patients approved for the procedure.
While the device is not a cure for GP, it does improve nausea and vomiting symptoms in many patients. It does NOT cause the stomach to contract and will not aid digestion. The settings on the device are increased or decreased based on symptom control and patient tolerance. Settings can be adjusted at the physician's office by an external remote control. Whether improvement is gradual or immediate depends on the patient
G-POEM Gastric Peroral Endoscopic Myotomy
Dr. Khashab and his colleagues pioneered the G-POEM at John’s Hopkins. The POEM was initially performed on patients suffering from Achalasia and provided encouraging results. The POEM was then trialed on individuals with Gastroparesis. Instead of opening the sphincter between the esophagus and stomach, the surgeon will open the pyloric valve. Through endoscopic measures, the inner layer of the pyloric valve is cut, also known as a myotomy.
Preparation:
You will be on a liquid diet for 48 hours prior to the procedure. This is to ensure that nothing is in the stomach or esophagus the day of the procedure. Twelve hours before the G-POEM you will be asked to take nothing by mouth.
Before the procedure:
You will be asked to report 2 hours before the procedure. An IV will be inserted to provide fluids, anesthesia, and antibiotics.
During the procedure:
You will be asleep. An arterial line will be placed to monitor your blood pressure. The doctor will insert an endoscope and inspect the pyloric valve. After the inspection, an incision in the stomach will be made. The doctor will then cut the inner lining of the pyloric valve. This is termed myotomy. After this, the incision will be closed with standard endoscopic clips.
After the procedure:
You will be taken to recovery as the IV sedation wears off. Once recovered, you will be admitted for observation. You still will not be able to eat or drink. The next morning you will have an upper GI with barium. If there appears to be no complications, you will be discharged and able to go home. Although there are no long-term results, as this procedure is fairly new, the short-term results are very exciting and hopeful. Literature supports that G-POEM improves both symptoms and gastric emptying in postinfectious, postsurgical, and idiopathic refractory gastroparesis (Mekaroonkamol et al., 2016).
References Johns Hopkins Medicine (n.d). Gastroenterology and hepatology: Peroral endoscopic myotomy (POEM). Retrieved from here.
Mekaroonkamol, P., Dacha, S., Keilin, S. D., Willingham, F. F., Cai, Q., Li, L. Y., & Xu, Y. (2016). Gastric peroral endoscopic pyloromyotomy (G-POEM) as a salvage therapy for refractory gastroparesis: a case series of different subtypes. Neurogastroenterology and Motility, 28(8), 1272-1277
Another issue I have seemed to have is visiting the emergency room. I’m not one to let myself suffer unnecessarily, but my experiences in the emergency department over the last year have turned me off the idea of going there altogether. Most of the time I drive 45 minutes to a different hospital instead of the one two minutes from my house. This is because Brantford, Ontario has possibly the worst emergency room in all Southern Ontario. I have been mocked, ignored, screamed at to stop crying (while I was enduring the most pain I had ever been in) and denied pain medication. I am not one to beg for narcotics, especially when they can slow down gastric emptying and make GP even worse, but most of the time they will give me nothing but Tylenol. No Maxeran, no Haldol, sometimes for days on end. They assume because I use medicinal marijuana that I am a drug addict and only there for medication. It is beyond frustrating and I am sure I’m not the only one of us that has been treated this way. Fun story, a doctor at this same hospital once sent me, vomiting blood, to a methadone clinic and told me she was sending me to a “pain clinic” for help. When I walked in the woman asked me what I was addicted to so naturally, I said “nothing?” and was told exactly what the clinic was and that I needed to go back to the hospital. I made the mistake of never getting that doctor’s name and filing a direct complaint. If you are ever considering filing a complaint with a local healthcare provider that you feel treated you poorly, my advice is absolutely do it.
My question to you guys (if you feel so inclined to answer) is: - How have your experiences with your local emergency/ urgent care centre effected you? - Have you been denied pain medication because of someone assuming you are addicted to drugs? - Have healthcare professionals ever gaslighted you by trying to make you think it was all in your head? On a lighter note, I've added a link to a song that helps me feel a bit better on my bad days!
Stay tuned for my next post! I’m hoping to briefly cover all of my favourite pieces of advice on managing gastroparesis and hope I will be able to offer something helpful to at least one of you.
Stay hydrated. Be kind.