TPN Awareness Week!!!

TPN is a big part of life for many people with gastroparesis.

Hustle & Heart

Happy TPN/HPN awareness week! This week, the OLEY foundation recognizes August 7-11 to help spread information and awareness of TPN/HPN. (TPN is sometimes called HPN, which stands for HOME Parenteral Nutrition. They’re considered the same thing). This week, I hope to share as much as I can about TPN, and where to find information and resources for those who are starting TPN, know someone who relies on it, or simply wants to know more.

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Being on TPN at first, besides being scary, was isolating. I felt very different, and I wasn’t sure how to navigate my life. I started out being on TPN 12 hours a day. That meant if I wanted to go to a friends, out to dinner, out to a movie, or anything of the sort, I needed to go prepared. At first, the idea of being away from home during that time was daunting. All the…

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ACTION ALERT!

This message comes from OLEY.org – enriching the lives of those living with home intravenous nutrition.


This is an extremely important time to be engaged!

We will be sending alerts periodically, but posting updates to oley.org/Legislation frequently. Stay tuned for updates on this and other important legislative issues.

ACTION ALERT

Ask Senators to vote NO and go back to the drawing board

There have been several developments during the last several days related to the Senate effort to repeal and replace the Affordable Care Act (ACA).

Please contact the offices of your two Senators and urge them to go back to the drawing board!

 

Take Action:

  • Secure the contact information for your Senators by visiting www.Senate.gov and using the “Find Your Senator” query tool in the upper right corner.
  • Call the office and ask for the Health Legislative Assistant. You can either leave a voicemail or request their e-mail address and send them a message using the template below.
  • Politely and occasionally follow up on your request. You should have an expectation that the office will respond to your specific concerns.

[here is a template you could use]

Dear _______,

My name is _________ and I am a constituent from _________. I am also an advocate for (your health condition). I write to urge you to vote NO on the Senate’s healthcare bill and go back to the drawing board.

The Senate healthcare bill would:

  • Jeopardize patient access to quality, affordable & available coverage
  • Cut-off health coverage for millions of Americans
  • Bring back annual and lifetime caps on coverage
  • Price people with pre-existing conditions out of the insurance market

I write to urge you to maintain stability for chronic disease patients as you and your colleagues consider healthcare reform. It is my hope that the Senate will develop a bill that preserves key patient protections and respects the circumstances of those combating chronic and costly illnesses.

Specifically, please ensure any Senate proposal:

  • maintains essential health benefits
  • prohibits pre-existing condition discrimination
  • prohibits lifetime and annual caps on benefits
  • limits out-of-pocket costs for patients in a meaningful way
  • allows young adults to stay on family coverage until they are 26

[Add a paragraph of brief information about your condition. Tell your story.]

Patients need a transparent, bipartisan effort to stabilize the insurance market, bring down premiums, and retain the protections that are so critical to patients, consumers and their families. I urge the Senate to go back to the drawing board, and work together to find ways to protect patients with serious illness.

Thank you for your time and your consideration of this letter. Please tell me how you have responded to my request.

Sincerely,

[Your Name]
[Your Address]


Tomorrow may be too late. Do this today! Silence is no longer an option.

– G-PACT

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

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. !

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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

URGENT: 21st Century Cures Act needs your support RIGHT NOW

Patient Alert: In a much more rapid fashion than expected, the House of Representatives is currently voting on a final version of the 21st Century Cures Act. Though certainly only representing an initial foundation, the Act is the broadest effort in the fight for FDA reform that I have seen in nearly 25 years.  
If you or a child, or a parent suffers from Digestive Tract Paralysis or any one of nearly 10,000 chronic diseases that are currently incurable in the US, PLEASE take the time to call your senators or Congressperson to push the need for treatment regulatory reform that the best available treatments do not remain blocked simply by Federal regulation and not for a lack of scientific progress.
For G-PACT and the Digestive Disease National Coalition, this is a defining moment in the fight that guarantees a future in which well-tailored conservative treatments rather permanent artifiical nutrition, ostomy and digestive tract transplant are not the choices for the current generation and for our children and grandchildren.
For the chronic disease commnuity at large, this is the foundation of a future that will guarantee, properly and personally tailored treatments and cures for a population of 30 million Americans.
In tribute of the memory of those that we have lost, and to start the fight for those that we wish a cure and a return to function.
#CuresNow #CuresForever

Amitriptyline: A Sound Release

by Rita Griffin

Both constant and periodic vomiting and nausea plagued my son off and on for several years during high school. When he entered college in 2011, the frequency of stomach upsets increased. Numerous visits to the emergency room interrupted his college experience, and made his life unbearable.

In the fall of 2014, he was finally diagnosed as having idiopathic gastroparesis. The gastroenterologist, at that time, had first thought that he had cyclic vomiting syndrome. However, after performing the gastric emptying study, it was concluded that he indeed had gastroparesis.

Now that we knew what the problem was, it was decided by the doctor to prescribe nortriptyline, a tricyclic antidepressant, which helped alleviate the nausea for a while. The gastroenterologist was hesitant when he prescribed Reglan (metoclopramide), despite the overt side effects. Neither drug was helping my son, who at this time, was suffering emotionally from being sick, and missing college classes.

Another doctor with GP sufferers in his practice recommended placing my son on amitriptyline, also a tricyclic antidepressant. He also wanted him to cease gradually from the Reglan. My son stopped taking nortriptyline, and has now ceased from the Reglan.

Happily, I can say that amitriptyline has really aided my son with the nausea and vomiting associated with gastroparesis. Yet, he still has to avoid spicy, acidic foods to get the full potential of the drug.

Amitriptyline is used to help relieve symptoms of depression. My son takes his at bedtime, because it can cause drowsiness (his only complaint in the last six months). His local GI doctor and the GP specialist have both advised that they can increase his dosage, if needed. The highest dosage recommended is 150mg.

At first I was unaware that amitriptyline was used to treat depression. I could not understand how this could help with gastroparesis. After careful study, I learned that the drug works on the central nervous system to increase levels of certain chemicals in the brain. His GI doctor told us that stress could be a factor in our son’s sickness, because around the time of college exams and tests, his condition would worsened.

My son has shown no episodes of nausea, only rare occasions of pain. Pain is common with GP. When I first saw my son bent over in agony, I told him to stay calm and be more relaxed thinking that would help, but I did not really understand the pain he was experiencing. Based on my readings and information from the GP specialist doctor, the cause of GP related pain is unknown. The GP specialist who prescribed amitriptyline for my son gave an interesting finding in a report with the International Foundation for Functional Gastrointestinal Disorders (IFFGD, regarding tricyclic medications: “Low doses of trycyclic medications, such as amitriptyline, nortriptyline, and desipramine, have been shown to reduce pain in other functional gastrointestinal (GI) conditions and may reduce pain associated with gastroparesis.” The amitriptyline seems to help my son with pain.

As with all medications, there are diverse side effects. According to healthline.com the most common are “headache, constipation or diarrhea, confusion, numbness or tingling in arms and legs, unexpected weight gain or loss. The more serious side effects are chest pain, shortness of breath, weakness on side of body and slurred speech. There can also be interactions with herbs and vitamins.” So, it is important to check with your doctor before taking anything else while on amitriptyline.

Taking too much can lower your blood pressure and cause an irregular heart rate, confusion, hallucinations, and even convulsions. Your physician must monitor dosages. In fact, the Mayo Clinic advises that a doctor should check you at regular intervals for changes in dosage or to check for unwanted side effects. Amitriptyline may cause some people to be agitated, irritable, or display other abnormal behaviors.

Amitriptyline has given my son much needed relief from the nausea and vomiting associated with gastroparesis. In addition to the medication, he does chiropractic care, which has proven to be a positive benefit. My son has his spinal cord adjusted about once a month. The Chiropractor uses his hands “ to apply a specific application of forces to facilitate the body’s correction of nerve interference.” [Chiropractic First, page 67] This helps to relax his stomach muscles.

My son has no other medical conditions, and he gets a good report from his general practitioner visits. He has to be conscious of his diet. This has to be the most daunting aspect for him because he is young, and like young people, he wants to be able to eat whatever he wants. Usually, he does okay when he takes his medication and adheres to what he has to do to stay healthy.

Amitriptyline may not be a cure, but it has proven to be a constant relief for my son. Until a cure, he can at least experience a sound release from the pitfalls of gastroparesis.

Related Sources

www.healthline.com

www.MayoClinic.org

www.aboutgastroparesis.org

www.drugs.com

Rondberg, Terry A., D.C., Chiropractic First, The Chiropractic Journal, 1996 & 1998

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 Domperidone Problem – The Goldwater Institute tells the story

Domperidone is a drug that has been used to treat patients with gastroparesis. It is not available by prescription in the United States, and while it was once able to be formulated in compounding pharmacies, that practice has been banned by the FDA. Domperidone is also available in many other countries, including Canada, but the FDA has blocked those channels for acquiring the drug as well.

Why is such a successful medication being targeted by the FDA?

The Goldwater Institute’s Mark Flatten has, with cooperation from G-PACT, written a powerful article explaining the many problems patients face getting access to Domperidone, titled, SICKENING: FDA BUREAUCRACY BLOCKS COMMON “MIRACLE DRUG”

We encourage you to read it. Then we encourage you to take action with your legislative representatives.

Learn more about Domperidone from The Mayo Clinic, here.

See what the Food and Drug Administration have to say about Domperidone and how to get it, here.