Repost: from our friends at Mighty Well

Hi all, Jim Sliney Jr, your Newsletter Editor here. What follows is an excerpt from the blog of our friends over at Mighty-Well – sharing their experience at the OLEY Conference, 2017. Enjoy!

At this year’s Oley Conference, the Mighty Well team had the opportunity to connect with potential partners, who share a socially conscious mission to not only improve the patient’s lifestyle, but also to aid caregivers in giving the most supportive care possible– similar to our mission of showing appreciation for caregivers, and “friends in the fight!”


This year’s Oley Conference was hosted in Greenwich, Connecticut. The foundation was established in 1983 by Lyn Howard, MD, and her patient, Clarence “Oley” Oldenburg. According to the Oley Foundation’s official website, the company is a “national, independent, non-profit organization 501(c)(3) that strives to enrich the lives of patients dependent on home intravenous nutrition (parenteral) and tube feeding (enteral) through education, advocacy, and networking.”

Mighty Well had the chance to network with various health organizations and businesses that share our similar mission to help patients and their caregivers live a happy, healthy lifestyle.

Here are some highlights from the event, as well as some innovative healthcare products that we know you will LOVE:


G-Pact (Gastroparesis Patient Association for Cures and Treatments, Inc.). An international nonprofit, leading the fight against paralytic conditions of the digestive tract, including, but not limited to, Chronic Intestinal Pseudo Obstruction and Colonic Inertia. Since 2001, they fund research, increase awareness, provide multiple free resources to patients and caregivers, offer support programs, and even advocate on Capitol Hill. I got to meet the founders of G-Pact, a strong group of people who set out to make a difference in the lives of patients, just like Mighty Well. I was inspired by how much they’ve done in such a short period of time and the impact they’re making on patients around the world.

Short Bowel Syndrome Foundation. I was also really excited to meet the team from the Short Bowel Syndrome Foundation! I’ve met many friends who have “ostomies” from Short Bowel Syndrome, and it is great to be able to meet an organization that is making a positive impact in the lives of SBS patients. We are looking forward to future collaborations with them!



Kate Farms® was by far our favorite food partner! They make delicious, allergen-free, meal replacement shakes for patients who require formula to maintain nutrition. Yep, that’s right–that means no dairy, wheat, soybeans, peanuts, tree-nuts, eggs, fish/shellfish, or corn. Not to mention, they use organic, plant-based proteins that have no hidden ingredients, like chemicals, non-nutritive sweeteners, or additives. They use a superfood formula, the Spectra™ Superfoods Blend, which is a combination of phytochemical extracts (active ingredients that support full body health) from 29 fruits and vegetables. Not only are the formulas a great source of protein and fiber, they are also a natural anti-inflammatory! Dairy, gluten and soy can trigger inflammation and upset a sensitive immune system.

Their products are not only a great source of nutrition for people with feeding tubes (as the formula can be used both orally and for tube feeding), but also helpful for the others like me, who have lost weight as a result of being on long-term antibiotics or for patients who don’t use TPN (Total Parenteral Nutrition) or a PICC line for treatment. My favorite flavored drink is vanilla, but their formulas also come in chocolate, coffee, and plain!



This dressing has saved my skin and allowed me to maintain a healthy PICC line since September 1, 2016. My favorite product from Covalon is IV CLEAR™, which is an antimicrobial, clear, silicone adhesive securement dressing with chlorhexidine and silver. It not only helps my skin heal, but also relieves me of having to worry about maintaining a safe, secure PICC line. I am happy to admit that because I use Covalon’s dressing, I have never acquired contact dermatitis.


Our PICCPerfect covers are made of anti-microbial, moisture-wicking fabric, and not to mention, our patterns are pretty stylish too. See why people at the Oley Conference were raving about our product!


The Lifeline Letter from Oley keeps those on TPN number two up-to-date on the latest product

innovations, amazing stories, and community events. This is a must subscribe!

Dealing with a Gastroparesis Flare

Dealing with a Gastroparesis Flare

by Nancy Brown



What is a Gastroparesis Flare?

A medical flare is defined as a temporary worsening of symptoms of a disease or condition.  A gastroparesis (GP) flare is a period of time when you continually experience GP symptoms for consecutive days.  Symptoms can include vomiting, nausea, early satiety, bloating and abdominal pain.  GP flares often persist and are difficult to relieve.  If you have other conditions, they may flare-up as well.  Overall, you feel horrible.

What causes a Gastroparesis Flare?

You may feel that your GP flare is just one of those things, but there are underlying causes.  To check yourself, ask the following questions:

  • Have you changed anything in your diet?
  • Have you changed medications, including over the counter medications?
  • Has something changed in your life (new job, move, relationship changes)?
  • Are you under stress at work or home?
  • Are you getting enough sleep?
  • Are you exercising?
  • Have you been sick with non-GP illness?
  • For women, are you on your menstrual cycle?
  • Are you depressed or anxious?

Tips for dealing with a flare

During a GP flare, keep a food diary, tracking what you eat and symptoms that you experience.  Tracking this information along with medication changes, may aid in reducing the risk of having future GP flares.  If you’re able to exercise, walking after each meal aids digestion and reducing stress. Contact your Gastroenterologist or the doctor who treats your GP if symptoms and/or pain worsens.

Below are actual experiences from our GP community on how you know if you’re having a GP flare and advice for working through a GP flare.

K.B. – I know I’m having a GP flare when I start vomiting up everything. I get really sluggish and have trouble sleeping because I need to vomit or my stomach hurts. I always get dehydrated during this time enough that I need IV fluids.  My advice to work through one would be not eat or drink a lot. I usually just drink Pedialyte and ginger ale, and eat Pedialyte popsicles during these times. I do try to eat when I feel up to it even though I know I will vomit; hopefully something will stay down. A heating pad is great for pain.

I can’t take medicine because it makes me sick for some reason, but during flares especially I live on Phenergan suppositories and Zofran ODT. Sometimes I use Pepto chewable tablets. After about 2-3 weeks of a flare, I go to the ER for fluids because my flares usually last around the same time of 3-4 weeks long.

A.B. – I was in a flare the whole month of March and late April. No appetite, nausea every morning but thankfully, I’ve never had much pain. During those 2 months, I ate very little; basically potatoes, eggs, Jell-O, applesauce, (soft foods). I then started juicing and that seemed to help.

My main symptoms during a flare are nausea and early satiety with little appetite. I try to only eat bland foods and juice when I can. I can usually tell I’m starting a flare when I wake up in the mornings and the nausea hits. Thankfully my nausea only lasts until early afternoons but, I’m still not hungry. I also drink fresh ginger tea and take ginger capsules to help with the nausea.

K.H. – I seem to get one extremely bad flare up that lands me in the hospital every month. A few days before the never-ending vomiting starts, I notice that my usual safe foods are no longer tolerable, I become constantly nauseous, bloated so much so I’m asked when I’m due. Drinking water feels like a chore. I’m still new to this disease so I haven’t learned too many ways to gain relief yet, but I found hot showers/baths, ginger candy and sipping on cola help a little bit.

It’s important to remember that people experience GP flares differently.  Just as not everyone experiences GP the same, not every solution works for everyone.  Work with your Gastroenterologist or doctor who treats your GP to figure out what works best when experiencing a GP flare.


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.


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

by Nancy Brown for


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).


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.


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.


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.


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.

Prokinetics: What You Should Know – by Nancy Brown

Prokinetics: What You Should Know

by Nancy Brown


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


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


YES NO Depends on medical condition NO*


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

(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:


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 .

Image credit:


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 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.



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:

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.