5 Important things to know if you are Newly Diagnosed with Gastroparesis

by Nancy Brown for G-PACT.org

YOU ARE NOT ALONE

Gastroparesis (GP) is one of several digestive motility disorders that impact the body’s ability to digest food.  Severity ranges from mild GP, where the disease can be managed by diet, to severe, requiring a feeding tube in order for the body to process nutrition.   There is no cure for GP, although it can be managed through diet and medication.  Symptoms include:

  • early satiety
  • nausea
  • vomiting
  • bloating
  • constipation
  • heartburn
  • weight gain or loss

Being diagnosed with GP can be overwhelming.  One in twenty-five people in the US, including children have been diagnosed with GP.  Causes of GP include diabetes, injury to the vagus nerve (the nerve that controls stomach muscles), infections, medications that slow motility, Parkinson’s disease, Multiple Sclerosis, or for unknown reasons (idiopathic).

WHAT TO EXPECT

Diagnosis is difficult to determine based on symptoms alone.  Your doctor or a Gastroenterologist (GI) may order several tests including Gastric Emptying Study (GES), endoscopy, smart pill, and EGG to confirm the diagnosis.  Other tests may be administered to rule out other digestive issues.

GP is an under-served disease, which means it has not gotten the attention from the medical community that it should for the number of people suffering from it.  It’s important to find a doctor who is knowledgeable about GP to determine the right treatment plan. It may be necessary to visit a motility specialist. A motility specialist is a GI that specializes in slow stomach diseases like GP.  Don’t be afraid to change doctors and find someone to work with to manage GP. Having a trusting patient / doctor relationship is a vital part of the treatment plan.  Symptoms and concerns need to be shared with your doctor, so keep a running list of observations or questions to discuss during your doctor visits.

DEVELOP A TREATMENT PLAN

Managing your diet is a key component of managing your GP.  Your doctor will probably suggest a low fiber, low fat diet and eating 5 – 6 small meals per day.  A nutritionally balanced diet should be your goal.  Keep a food diary to document what you eat, the amount you eat, the time you eat, and any symptoms that you encounter after the meal.  This will help you to identify what you are able to eat and not eat.  There are several GP diets available on the internet that will give you an idea of what foods can be eaten. Unfortunately, GP is not a one size fits all condition.  Your diet must be tailored to what you can eat, eliminating foods that trigger symptoms.  Consulting with nutritionist (who is familiar with GP) to develop your diet plan will aid you in identifying healthy, tasty meals for you to enjoy.

Many GP patients require medications to aid in digestion and reduce vomiting and nausea.  Prokinetics are used to stimulate digestion.  Anti-emetics control nausea and vomiting.  In the US, Metoclopramide (Reglan) and Erythromycin are approved for GP.  Domperidone is approved for GP patients, but doctors must obtain advanced approval from the FDA to prescribe it.  Medications to control nausea and vomiting include over the counter and prescription drugs.  Over the counter drugs examples include ginger capsules, Benadryl, Unisom, Dramamine.  Zorfran, Compazine, and Promethazine are examples of prescription medication for nausea and vomiting.  Please work with your doctor to identify which prokinetic, anti-emetic, or other medications you need to manage your GP.

Sometimes diet and medication are insufficient to manage GP.  Surgical options are available to manage symptoms.  These include Botox injections, gastric pacemakers, feeding tubes, and most recently gastric peroral endoscopic pyloromyotomy or G-POEM.  Alternative treatments include acupuncture and hypnotherapy.

LIVING YOUR LIFE WITH GP

GP is a life changing disease for many who have the condition. To effectively manage your condition, here are a few tips:

  • Educate yourself on your condition.
  • Educate your friends and family.
  • Keep a food diary.
  • Become aware of new medications and/or surgical options for treating GP and discuss them with your doctor.
  • Reduce your stress and if your doctor approves, add exercise into your daily routine.
  • Find social activities to do with family and friends, that don’t involve food.
  • Enjoy social activities involving food by finding restaurants that have GP friendly meals or bring your own food to enjoy. Or purchase a GP Cookbook and cook a GP meal for family and friends.
  • Ask questions. Your doctor should be your chief source of information, but social media sites (Facebook) are a great place learn from the experiences of others.

RESOURCES

There are many resources about GP available via the internet, books, Facebook and online support groups, and blogs.  Living (Well) with Gastroparesis by Crystal Zaborowski Saltrelli CHC is an excellent book to help get started with managing GP.  Be wary of sites that offer a cure. There is no cure for GP.

 

About the author:

Nancy Brown lives in Virginia with her husband of 38 years, Ed.  They’re empty nesters and are enjoying retirement.  Prior to retiring, Nancy was a Manager of Requirement Analysis at Navy Federal Credit Union.

 

Resources used to develop this article.

https://www.g-pact.org/gastroparesis

http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/definition/con-20023971

http://www.aboutgastroparesis.org/living-with-gastroparesis.html

http://www.gastroparesisclinic.org/filemanager_in_ckeditor/js/ckeditor/filemanager/browser/default/userfiles/file/Gastroparesis%20Common%20Concerns.pdf

https://www.niddk.nih.gov/health-information/digestive-diseases/gastroparesis

http://www.hopkinsmedicine.org/gastroenterology_hepatology/_pdfs/esophagus_stomach/gastroparesis.pdf

http://www.webmd.com/digestive-disorders/digestive-disorders-gastroparesis#1

Prokinetics: What You Should Know – by Nancy Brown

Prokinetics: What You Should Know

by Nancy Brown

5/25/17

Prokinetics are class of medications that enhance motility for those who suffer from Gastroparesis and other slow motility diseases.  They are prescribed to improve the nausea, vomiting and bloating symptoms that people with those diseases commonly suffer from.

Prokinetics work by increasing movement of the stomach and intestines, improving overall digestion.  There is currently only one FDA approved prokinetic for Gastroparesis, though other prokinetics are prescribed off-label by doctors.  Off-label drugs were developed for other purposes, but have been found to improve motility for some Gastroparesis patients.  Below is a description of several prokinetics:

  Prokinetic Requires Rx Avail in US Recommended Duration of Use FDA Approved for GP
Metoclopramide

(Reglan)

YES YES No more than 3 months unless otherwise approved by doctor YES
Domperidone

(Motlium)

YES NO Depends on medical condition NO*
Erythromycin

(Erythrocin)

YES YES No more than 3 months unless otherwise approved by doctor NO
Tegaserod

(Zelnorm, Zelmac)

YES NO Restricted usage for emergency only NO

*Domperidone is actually approved for Gastroparesis patients but doctors must obtain advanced approval from the FDA to prescribe it.

Metoclopramide (Brand names include Reglan, Metozolv ODT, and PCP 100) is the only FDA approved drug for Gastroparesis.  It aids in digestion by causing stomach muscles to contract.  Metoclopramide also decreases incidents of nausea and vomiting.  Metoclopramide may cause tardive dyskinesia, a serious movement disorder.  The risk of tardive dyskinesia increases if Metoclopramide is used for longer than 12 weeks. Talk to your doctor about the risks and benefits of this medication.

Domperidone (Brand name Motilium) is approved in Canada, Europe, Japan and other countries, but not in the US. Originally developed to enhance breast milk production in lactating women, the FDA did not approve Domperidone due to risk of cardiac arrhythmias or cardiac arrest.  The FDA recognizes that Domperidone improves motility, nausea, and vomiting.  Doctors must request FDA approval to prescribe and order Domperidone.

Erythromycin is used to treat and prevent a variety of bacterial infections.  It speeds up motility, but its effectiveness reduces after several weeks of use.   Intravenous Erythromycin used in a hospital setting is effective for patients with severe Gastroparesis.  Lower doses of oral erythromycin improve Gastroparesis symptoms; unfortunately, side effects include stomach cramps and nausea.

Tegaserod (Brand name Zelnorm or Zelmac) is only available for emergency situations with approval by the FDA.  Originally developed for treatment of Irritable Bowel Syndrome (with diarrhea) or Chronic Idiopathic Constipation, Tegaserod increased stomach emptying and movement through the bowels.  Due to FDA concerns with cardiovascular side effects, it was removed for use in 2007.

The following drugs are in use for Gastroparesis, but they are not available in the US:  Levosulpiride, Mosapride Citrate, Itopride hydrochloride, and Pruclopride.

 

Future developments:

A clinical study has been completed in the US for Renzapride.  This drug is currently being developed by EndoLogic LLC for distribution.  Renzapride was tested for both gastroparesis and IBS-D.

Several other clinical trials are in process for evaluating drugs (beyond prokinetics) to treat Gastroparesis:  Promethazine, VLY-686, Prucalopride, RQ-10 (Parkinson and Gastroparesis) and Lixisenatide.  Please refer to https://ClinicalTrials.Gov and search for Gastroparesis for additional information on clinical trials.

Prokinetic medications may not be an option for all Gastroparesis patients.  Side effects may be too severe or the prokinetic may interact with other medications the patient is prescribed.  Gastroparesis patients often use prokinetics in combination with other treatment options or not at all.  Gastroparesis patients should work with their doctor to determine the best treatment plan based on the severity of gastroparesis.

 

About the author:

Nancy Brown lives in Virginia with her husband of 38 years, Ed.  They’re empty nesters and are enjoying retirement.  Prior to retiring, Nancy was a Manager of Requirement Analysis at Navy Federal Credit Union.

Resources for article:

http://webmd.com
http://www.aboutgastroparesis.org/medications.html
http://www.digestivedistress.com/motility-rx
http://www.medscape.com/viewarticle/514206_4
https://clinicaltrials.gov/ct2/show/NCT02130622?term=gastroparesis&recr=Open&rank=3
https://globenewswire.com/news-release/2017/01/03/902783/0/en/EndoLogic-Acquires-Renzapride-from-Alizyme-plc.html
https://www.fda.gov
https://www.ncbi.nlm.nih.gov

IT’S OKAY NOT TO BE OKAY

In this guest post by writer and runner Samantha H Smith, we hear about loss – sadly, an ongoing problem in the gastroparesis community. Samantha has dealt with plenty of it, but she finds strength somehow.

“It’s Okay Not To Be Okay” – by Samantha Smith 05/15/17

I’ve been sitting here trying to write about loss for a few days now. Some days, my mind just doesn’t want to form words, or even try to comprehend all the emotions I’m feeling.

Recently, the GP community lost a sister; a brave and beautiful soul who meant the world to many people. I myself considered her a good friend; someone I was truly lucky enough to know and love. She was the kind of person who no matter what she had going on, she made time for you.

When I was at my sickest, and TPN became a reality, Dalia was right there, offering hope, advice and comfort. I’d always considered her a friend, but it was during that time that we grew close.

Everyone will experience loss at one time or another. Someone in your life may die. You may lose a job, a friendship, or a significant other. Loss is difficult, but loss is normal. I want you to know, it’s OKAY to not be okay. It’s okay to have bad days. Some days, the pain will be less, and you may be fine. Some days, the pain may be so overwhelming you can’t get out of bed. I’ve learned to be okay with myself during both days.

Just remember, it won’t last forever. Things will get better. You WILL be okay.

 


Samantha is 27, from upstate NY. She lives with a few chronic illnesses, one being Gastroparesis. She has a Bachelors degree in forensic psychology that she hopes to have a career in someday. Writing and running are both passions of hers. You can find more of her writing at her blog https://hustleandheart2016.wordpress.com/ .

Image credit: www.snappygoat.com

 

Malnutrition and Gastropares

Malnutrition and Gastroparesis

– by Rita Griffin and Jim Sliney Jr.

A major consequence of gastroparesis can be malnutrition. This is a direct result of the inability to properly absorb nutrients from food, or from minimal food intake. In severe cases of gastroparesis hospitalization may be required to correct the debilitating effects of dehydration and malnutrition.

The National Institutes of Health says that symptoms of malnutrition “may include fatigue, dizziness, and weight loss. Or, you may have no symptoms. To diagnose the cause of the problem, your doctor may do blood tests and a nutritional assessment. Treatment may include replacing the missing nutrients and treating the underlying cause.”

One of the greatest challenges of gastroparesis is learning how to maintain a nutritionally balanced diet through flare-ups. When suffering frequent flare-ups it is a struggle to figure out what can and can’t be eaten in order to meet vital nutritional needs. It is easy to get frustrated and lose hope.

Fortunately there are proactive adjustments one can make that can reduce the risks of becoming malnourished. According to the International Foundation for Functional Gastrointestinal Disorders (IFFGD) you can:

  • Work with a registered dietitian (RD) or nutrition support specialist (nurse or doctor) to design a dietary plan to meet your individual needs; understand how to use and maintain dietary and nutritional therapies.
  • Eat frequent, small meals that are low in fat and fiber. Fat, fiber, and large meals can delay stomach emptying and worsen symptoms.
  • Keep hydrated and as nutritionally fit as possible.
  • If you have diabetes, maintain good glucose control. Irregular stomach emptying can negatively affect blood sugar levels. Keeping your blood sugar under control may help stomach emptying.

Additionally, you can introduce multivitamins or liquid nutritional supplements (i.e. Ensure, Boost) to help meet nutritional needs.

Diet may be the most important discussion to have with your gastroparesis doctor. If your doctor is not well versed in diet and nutrition ask for a referral to a dietitian. Your gastroenterologist/dietitian can instruct you on foods to avoid, and the adequate amounts of vitamins and minerals certain foods can provide. It depends on each individual as to what form of diet can be tolerated. According to International Foundation for Functional Gastrointestinal Disorders, “Cooked or juiced vegetables are usually well tolerated. Consider adding nutritional supplements, such as caloric drinks, protein powder or protein bars.” Maintaining proper nourishment is the key.

The Liquid Diet

A full liquid diet is often used as a step between a clear liquid diet and a regular diet. Some GP patients unfortunately can only tolerate liquids.

Dr. Frank W. Jackson of gicare.com states that, “the purpose of the diet is to reduce symptoms and maintain adequate fluids and nutrition.” He goes on to discuss a 3 step diet plan:

  • STEP ONE DIET – Liquids – the goal is to prevent dehydration and keep the body supplied with vital salts and minerals. It consists of saltine crackers, fat free bouillon, Gatorade-type nutrient drinks and soft drinks. This diet has sodium and potassium but is otherwise not nutritionally sound. Step One shouldn’t last more than 3 days.
  • STEP TWO DIET – Fats – adding small amounts of fat and calories to the diet at less than 40 grams each day. Usually once Step One is completed, patients can tolerate Step Two. It can include skim milks, low fat cheese, eggs, peanut butter, some non-whole grain breads, well-cooked vegetables, and nutrient beverages as in Step One. Low in vitamins A, C, and Iron.
  • STEP THREE DIET – Long term – generally add fat with a limit of 50 grams a day. Still no fibrous foods, but fats can be increased to 50 grams a day. Also low in vitamins A, C, and Iron.

The information goes on to say that full liquid diets are usually low in iron, vitamin B12 and thiamine, as well as vitamins A and C and should be supplemented with a multivitamin. While the most common nutrient deficiencies seen in patients with gastroparesis (whatever their diet) are iron, vitamin B12, vitamin D, and calcium.

The The Gastroparesis Dysmotility Association in cooperation with Carol Rees Parish, RD and the University of Virginia, proposes a dietary plan based on “Food Zones”. The Food Zones seem to be an effective way to manage the changes needed when a flare up comes on. Beginning with clear liquids, as symptoms improve you can move up to full liquids, then to blended foods, then to soft foods, then to lower fat, full or solid foods. If a flare-up occurs, move back to the first zone (clear liquids) and begin moving back into each zone as you can tolerate.

food-zones

 

You shouldn’t try to manage all your nutritional needs on your own. The resources exist and your doctor or dietitian can help you tremendously. Remember to always monitor your diet, keep notes (that will help you and your medical team) and consult with your doctor about your specific nutritional needs.

 

Resources for article:

http://www.aboutgastroparesis.org/living-with-gastroparesis/prevention-management-tips.html

https://www.gicare.com/diets/gastroparesis-diet/

http://www.digestivedistress.com/what-to-eat-diabetics

Clinical Nutrition Week, Orlando FL 2/18-2/21

Clinical Nutrition Week 2017 in Orlando, FL

The American Society for Parenteral and Enteral Nutrition’s (ASPEN) Clinical Nutrition Week (CNW17) is a can’t miss conference for nutrition support professionals. Over 2,000 clinicians and researchers will gather for four days of educational and research programs aimed at improving patient care, on February 18-21, 2017 at the Orlando World Center Marriott in Orlando, Florida.

CNW17 features pre-conference courses, late-breaking research, and opportunities to meet nutrition support professionals from around the world. The pre-conference course, Functional

Medicine: The Optimal Approach to Intestinal Disorders, will provide an introduction to functional medicine and cover topics such as Case-Based Functional Nutrition Approach in a Nutrition Support Patient with Gastroparesis.

 

Visit the official CNW17 site for additional program information and to register.

Skateboarding my way to health

By Rita Griffin

Skateboarding My Way to Health: Johnathan’s Journey with GP

 

Barbados, a Caribbean paradise that invites travelers to its magnificent beaches, is home to a courageous thirteen year-old boy, who is battling gastroparesis. His story is an inspirational and uplifting one, of how a young person can face difficult challenges with grace and determination.

Gastroparesis, a rare under-served disease often associated with young women, has no respect of persons. According to digestivedistress.com, “The National Institute of Health in the United States has declared that 5 million Americans are afflicted.” Of this staggering number one-third are idiopathic, meaning that there is no clearly identifiable cause for the illness. Even though the majority of sufferers are female, many males are being diagnosed from young to old.

Johnathan began his journey with GP in 2014 when he was only ten years old. He started experiencing constant vomiting and nausea. He was taken to five doctors in Barbados, but they could not figure out what was wrong. Johnathan stated, “One doctor thought it was constipation and gave me a laxative, luckily my family stopped giving it to me and took me to another doctor.”

He also suffered with acid reflux, and this added to the distress of vomiting and nausea. So, his parents brought him to the United States to the Arnold Palmer Hospital, where numerous tests were done. Johnathan explains, “After a 24 hour motility test at the hospital, the specialist indicated that the antrum of my stomach had flat lined, and that I had no activity. It was severe gastroparesis and no medicine had an effect on me.”

Despite hearing such devastating news, Johnathan’s parents helped him learn how to cope with his sickness. They were his mental support with care and understanding. Besides, he was only ten years old when he started getting sick, and his future had not been mapped out.  When he heard this devastating news, Johnathan was just a young boy who wanted to skateboard and go to school.

He was in the top of his class. Due to his challenges with GP, he missed two years of school. Yet, he never gave up! He was determined to achieve and to live, a determination which is crucial to overcoming any obstacle in life, especially a debilitating illness.

He was formally diagnosed in February 2014. Though he knew the cause of his vomiting and nausea, he got progressively worse. He was taking Reglan and it worked for only three months. He started vomiting again with bad stomach pains, causing him to lose weight. “I spent a month in hospital in October 2014 and they put a GJ tube in me to feed, as nothing would stay down and I only weighed 54 pounds.”

map-of-intestines

A GJ tube or Gastro-Jejunal is often used in severe GP patients. It is placed in the stomach and attached to the jejunal portion of the small intestine. From November 2014 to last September (2015), Johnathan could not eat, and was fed through the GJ tube for 18 hours a day. Courageously, he says, “ I got accustomed to walking with my milk either in a bag or walked around pulling my IV feeding pole.” Johnathan did not allow his circumstances to dictate his life. He amazingly endured the inconveniences of the feeding tube, and persisted with a positive attitude of getting well.

Last September (2015), he was fitted with a Gastric Pacemaker or Stimulator, and was taken off the GJ tube. This electrical device provides mild electrical stimulation to the lower stomach nerves. According to the California Pacific Medical Center, this device is placed below the rib cage in the abdomen, and mild electrical pulses are transmitted through a neurostimulator encouraging the stomach to contract, and to help relieve nausea and vomiting. This procedure worked for a month before Johnathan’s symptoms returned. He had to travel from Barbados to the hospital in the states to have the stimulator adjusted. The device would work for a short while and then the symptoms of vomiting would return.

The pacemaker was not having a lasting effect on Johnathan’s gastroparesis, so he discontinued its use and went back on the feeding tube. This therapy is reversible, and can be turned off at any time by the specialist. During this time, he had to go back to the hospital and it was discovered during several tests that the leads for the pacemaker were placed too low on the stomach, and needed to be higher to have a better effect. The changes were performed in April; however, he developed an infection so in May, they removed the pacemaker and sanitized the area. The pacemaker was replaced. Johnathan says, “I have been feeling better since May.” He was able to return to school after missing two years.

The pacemaker is working greatly according to Johnathan’s father. The feeding tube is also used just for insurance. Johnathan is not taking any medication other than an antacid once and a while, and Zofran for occasional nausea. “I am able to eat breakfast, lunch, a snack, and dinner. Some days I do not feel hungry at meal time. I also feel nausea sometimes, but much less than before.” His enthusiasm and passion for skateboarding is his therapy. Now, he is able to skateboard for 2-3 hours a day. He has also resumed his schoolwork and is doing quite well.

His favorite movie is Miracles from Heaven, about a young girl suffering from a rare digestive disorder who finds herself miraculously cured after surviving a terrible accident. The movie was very similar to what Johnathan experienced with GP, except as he points out, “My miracle came in the form of a pacemaker.”

Johnathan’s hope and courage is an inspiration for how we can overcome the challenges life presents. His determination is summed up in these words of encouragement: “Always believe in the person suffering with GP. It is frustrating when a doctor tells you that it may be in your head, when they do not know what is wrong. Research is the key towards understanding the illness and searching for a solution. Always keep fighting and remain positive. Life will get better with the right treatment. Never give up!”

Related sources used:

www.cpmc.org (California Pacific Medical Center)

www.digestivedistress.com

www.feedingtubeawareness.org

Rita Griffin is a Georgia native. She has a Bachelor of Science degree in Psychology and worked for the Georgia Department of Transportation for 15 years. She loves studying the Bible, reading, traveling, writing, and meeting people. Rita has published 4 books of poetry. She is married with two sons. Rita is a volunteer writer for G-PACT.

The PIE FACE CHALLENGE

This article from David Wilson of Itemlive.com introduces a young man named Andrew Billeveau. See the article where Andrew talks about his gastroparesis and how to raise money and awareness he took part in The Pie Face Challenge article. !

web-lorenz_161229_002-695x393
Andrew Billeveau post pie!      [photo by Mark Lorenz from the Itemlive.com article]
The article mentions G-PACT and our own Operations Director Colleen Beener.

Visit G-PACT’s own Pie Face Challenge on Facebook.

The PIE FACE CHALLENGE builds on the popularity of the ALS Ice Bucket challenge of 2015. The rules are simple:

  1. make a photo or video of you smashing a cream pie in your face!
  2. challenge your friends to do the same
  3. make a donation to G-PACT.org
  4. spread the word

gp-pie-face-challenge-flyer