Patient Headlight: Abigail the Visible

8/16/17

Patient Headlights are a way we here at G-PACT can acknowledge heroes from the Gastroparesis community. Today we’d like you to meet Abigail Miller, a young woman who is learning how to live with her gastroparesis.


Abigail Miller is from Pineville Louisiana and she has had gastroparesis since September of 2010. Well, that’s not quite true. Abigail began experiencing gastroparesis-related problems 6 months before her diagnosis.

Diagnosing gastroparesis can be very challenging. The most common cause of gastroparesis is damage to the vagus nerve, and the most common cause of such damage is diabetes mellitus. Diabetes is common; gastroparesis is not. A doctor is more likely to treat the disease he knows. Additionally, gastroparesis and other forms of Digestive Tract Paralysis (DTP) do not have a common diagnostic test. A gastric emptying study can be done and remains the gold standard for diagnosing DTP, but that is not a common test used to diagnose the most common complaints of patients (nausea and vomiting). This is partly why Abigail and so many others can go so long without a proper diagnosis.

Even once diagnosed, gastroparesis does not have a cure. So after 6 months of tests and doctor’s visits Abigail learned she had a disease that wasn’t going to go away. Two years after being diagnosed, things had gotten difficult enough that she ended up getting a gastric stimulator implanted. It was very helpful at first. Unfortunately, like many who have tried this procedure, it stopped being effective.

Having a chronic disease means learning to live with setbacks, having to explain yourself over and over, and not being properly understood. “Still, the worst part,” says Abigail, “is the friends you lose and the major changes you have to make to your life. I had to learn a completely different lifestyle. I gave up sports, friends, school, all because I have been sick.”

Learning how to live with a chronic illness isn’t easy, but Abigail has come up with some good methods. When she’s feeling ill Abigail says, “I like to paint or draw, and I like to snuggle with my dog.” She also makes sure to not let her disease take over her life. For instance, when she’s able, she likes reading, drawing, “hanging out with friends and volunteering at a local humane society.” These things help her stay positive during the hard times.

Abigail Miller
Abigail and her dog

When we asked Abigail what advice she would have for others who are experiencing this disease, she had some great wisdom to share. “Draw, read, snuggle a pet, hang out with family or friends, because as soon as you give up, those things will go away, so cherish them now. Try to see the positive side of things.” With good sense like that no one would be surprised if someday she becomes a very important voice for supporting the DTP community.

As for the world at large, Abigail wants everyone to know that “Invisible illnesses are real, and just because I don’t look sick doesn’t mean I’m faking it.” And that is a big part of what Gastroparesis Awareness Month is all about – not just helping the people with the disease, but helping doctors and parents and children understand better what people are experiencing. People don’t always take the time to stop and understand the challenges their fellow humans encounter, but in August, Abigail and G-PACT, and so many others, and YOU, get to take a moment and help others understand.

 

Thank you Abigail. Keep being awesome!

Dealing with a Gastroparesis Flare

Dealing with a Gastroparesis Flare

by Nancy Brown

7/3/17

 

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.

http://www.mayoclinic.org/diseases-conditions/gastroparesis/symptoms-causes/dxc-20323133

http://livingwithgastroparesis.com/faq-are-flare-ups-random/

 

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

 

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