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!

“He Most Certainly Would Have Starved” – the story of Lucas and Traci Nagy

August is Digestive Tract Paralysis Awareness Month. During this month we’re going to be featured some stories from people who are influential or inspiring in our community. Today we’d like to share the story of Lucas Nagy and his mom Traci.


 

He Most Certainly Would Have Starved

by Jim Sliney Jr

Traci Nagy is the mother of Lucas Nagy. Lucas was first diagnosed with delayed gastric emptying when he was only 3-months old, though his challenges began from the day he was born.

“He wasn’t able to tolerate bolus tube feeds,” Traci told us. “It wasn’t until he was 20 months old when he was diagnosed with Koolen de Vries Sydrome.” Koolen de Vries is a disease characterized by delayed development and mild to moderate intellectual disability. The diagnosis helped make sense of his gastroparesis: his digestive tract could not function because he had not developed sufficient muscle tone. Lucas had to live with a feeding tube.

Lucas is 9-years old now, and he functions much better than he did as an infant, in large part because he gradually developed the muscles that had been so weak and put him at a disadvantage at birth, but also because of his feeding tube regimen. “We’ve been able to adjust his feeds depending on how his motility is on a given day.” That kind of insight and flexibility is important when relying on tube feeding; it helps keep nutrition in balance. Lucas’ ability to get constant nutrition has helped him grow and thrive and enjoy his childhood.

“Lucas loves trucks and buses and elevators. Ironically, he loves supermarkets and pushing the shopping cart.” But as his mom, Traci says, “the worst part of his illness is that Lucas has not known life without these problems.”

It might be instinctive to imagine a hard life full of setbacks and challenges, but good has come from Lucas’ illness too. In 2010, Traci founded the Feeding Tube Awareness Foundation (FTAF), which supports the parents of children who are tube-fed (parents like Traci). The FTAF is a 501(c)(3) charitable organization run entirely by other parents who volunteer their time. “I wouldn’t have started the FTAF if Lucas’ life wasn’t saved by tube feeding. He most certainly would have starved without it.”

Life can indeed be challenging when someone you love-unconditionally is saddled with a disease that has no cure. It means a new life for the person with the disease, but also for the people who love and care for them. We asked Traci what, with all of her experience, would she say to someone else who has just confronted their own chronic illness or the illness of a loved one. “Connect with other people. People who have been in your shoes. They will have information, resources and advice that can help you. Also, find a doctor who listens – one you can trust. Remember, you’re not alone in this.”


If you have a story to tell about your gastroparesis contact our Newsletter Editor, Jim Sliney Jr at slineyj@g-pact.org and we’ll help you tell it.

Patient Headlight Feature: “TPN Saved My Life” by Samantha H. Smith

Hello readers,

August is Digestive Tract Paralysis Awareness Month – a huge phenomenon! We at G-PACT have a lot going on, not the least of which are some fantastic guest writers for our blog.

Today we’ve got Samantha H. Smith:

Samantha
Samantha H. Smith

Samantha is 27, from upstate NY. She lives with a few chronic illnesses, one being Gastroparesis, but that doesn’t prevent her from being a runner and a strong writer for the GP community. She has a Bachelors degree in forensic psychology that she hopes to have a career in someday. Samantha recently became a member of the Chronic Illness Bloggers Network , and she was nominated for a WEGO Health award for her blog HUSTLE & HEART which definitely deserves a visit.

 


8/1/17

When I was diagnosed with gastroparesis, I was given very few options, as is the same with many of us in the GP community. I felt lost and confused. Diet changes were an obvious necessity and it was trial and error to find out what I could tolerate and what I couldn’t. The medication options seemed safer, yet the side effects were scary. The other options, like a feeding tube were more invasive, required surgery, and that in itself was a whole new level of scary. I didn’t know what to do.

Whether or not you have mild, moderate or severe gastroparesis, it sucks no matter what. For a while, I managed with dietary changes and restrictions. The medications made me feel worse. I was sick enough to have serious issues, but not sick enough for drastic measures to be taken. It left me wondering how much I had to suffer before I could get some real help.

From what I’ve read and heard from others, this is a position that a lot of GP patients end up in. Without more treatment options, this is where a lot of us become stuck.

Unfortunately, I ended up needing TPN (Total Parenteral Nutrition). After months of constant vomiting, I’d become so malnourished I was scared. I was getting IV calcium electrolytes and fluids at my local hospital every single day for over a month. It was barely keeping my head above water. I remember so many days I’d lay in bed at night wondering if I’d even open my eyes in the morning. Everything hurt all the time. My body was barely keeping down 100 calories a day.

I was leaving the hospital after an infusion on one of my worst days. My blood pressure was in the toilet. I was dehydrated even after fluids. I got into the car with my dad and called my endocrinologist. I told him I was scared I wasn’t going to make it. He immediately made phone calls to get me an appointment with the best MD in clinical nutrition in the area. It was the help I so desperately needed.

I was admitted into the hospital to start TPN on the day of my first appointment with the clinical nutrition doctor. I knew my care was in the right hands.

TPN is scary. It comes with risks in itself, sepsis being the big risk. Prior to this, I had a port for almost two years which is why I opted to start TPN instead of having a feeding tube surgically placed. I needed calcium infusions 3x a week for over a year due to hypoparathyroidism. Since I would still need the IV calcium, which could easily be added to TPN, that was the best choice for me.

I made it almost six months before I had any real issues being on TPN. About an hour into running TPN one night, I knew something was wrong. I took my temperature and it only confirmed what I already knew by the fever pains and chills; sepsis. I ended up on antibiotics for a while, and when they didn’t work, I had to go in to have my port removed and replaced. July of 2016 was a hard month for me. My body and I went through a lot, but we came out stronger.

I never thought I would rely on an IV for the majority of my calories. I never thought I’d get malnourished enough that I’d need it. And now, I’ve been on TPN about a year and a half. As much as it sucks to carry a bag around for 10 hours a day, I wouldn’t change it. TPN gave me my life back. Actually, it saved my life. I’m at a stable healthy weight. I’m able to eat more and function better. I’m grateful for TPN every day.

— Samantha

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.

Paul Sylvester

Every GPer has a different story.  My ‘virtual GP family’ ranges from those spending many more days in hospitals than their homes to those who flair only every couple of years, from amputees and tubies to those who run marathons or compete in talent pageants, and everything in between.

I’m  one of the ‘lucky/blessed ones’!…GP probably from diabetes, diagnosed fast, insurance  for pacer approved fast, then decreasing amount/severity of GP  flair-ups, now I eat anything/everything–including  salads & steaks (without gristle & extra careful chewing)…..  Last ER visit for GP was last year due to a ‘perfect storm’ situation …… Since I can’t relate  well to situations of most other GPers I  try to send them virtual hugs,  positive thoughts & a feeling that they are not suffering alone out  there–that somewhere out in the vast ether someone is ‘out there and  caring for them’ along with an encouraging reminder to NEGU! (Never Ever Give Up!)  261671_10150235671826235_3285838_n

I’m also 64, living just south of Green Bay  Wisconsin, retired with too much time on  my hands so I’m on FB too  much….(LOL)   I’m a very frequent poster in some G-PACT groups [Prayer Chain; Gutsy Guys Garage; Coping w/GP….] although I belong to over 20 GP groups (many inactive).  A few years ago my wife and I had the pleasure of hanging out for a day or so with G-PACT bigwigs Carissa Haston, Brittney Riley and Cindy Tessmer when they were only a state away for an Oley Foundation convention….  Every year I tease Carissa that I’ve got my entire state wearing Green & Gold every Friday for GP Awareness [but that due to our regional speaking dialect, G-PACT is pronounced Go Packers !!  (LOL)]

My Story – Dotty Fanelli

Dotty FanelliI remember the exact day it happened. It was the Friday before Memorial Day 2014. The unbearable pain that began in my upper abdomen caused me to go to the local ER. They told me to call my GI on Tuesday and since my bloodwork looked fine there was nothing they could do. I was discharged. My husband insisted we go to a larger hospital because there was clearly something wrong. We drove an hour with me in ungodly pain. They admitted me for observation. The GI came in the next day and told me to call my GI on Tuesday. I wanted to scream for help!

During the course of the summer I went to the larger ER six times for extreme pain and vomiting. I quickly learned that few doctors know about gastroparesis and furthermore, you’re treated as a drug seeker because of this. There were some wonderful doctors, but they truly didn’t know what to do. I just wanted relief from the pain. I had never experienced anything like this and I’m pretty tough! I found out during this period that I had lost 40 pounds in 10 weeks. I walked/sat around wrapped in a giant fleece because I was always freezing!

I finally saw my GI the week after observation. He ordered an endoscopy. The endoscopy showed slow motility and the doctor put me on Reglan. My only question lying groggily after the procedure “will it stop the pain?” No answer. I realize that pain is not the normal primary symptom for gastroparesis, but it was mine. I anxiously waited for the results because I may have an answer to the pain. Finally, a call from “my” GI after three days. He simply said he couldn’t treat me. He said I may have a disease. He then suggested I go to Jefferson or University of Penn. He gave me the number to Jefferson. Utter shock was my reaction. How could he just dismiss me? I’ll never forget/forgive this. My pain had now started in my upper abdomen and moved to my right rib cage. My parents came up from Florida for 5 weeks at this point. I simply couldn’t function anymore.

I went to Jeff because they had an earlier appointment. Jeff, like Penn is supposed to be an excellent hospital of Philadelphia. My young and inexperienced doctor did send me for a GES. It showed slow motility. He told me I had Gastroparesis in June 2014. I asked several questions. I was frustrated because most of his answers were “I don’t know”. He was nice enough, but I needed answers. He finally sent me for an MRI which showed nothing. I decided to try to go to another hospital for a second opinion with someone who was supposed to be an expert in the field. This was the single most horrible interaction I have ever had with a “physician”. The long and short of it is after a long interview asking about sexual abuse of myself and family, he decided he didn’t want to be involved. I had put all of my faith in this man! I was desperate for help! He said I needed a psychiatrist. He also said he wasn’t the only “drug man” in town. Get my drugs somewhere else. Go back to Jeff! I was heartbroken at this point. I was losing hope.

I had to educate myself. I used G-PACT, the net, books and support groups on the Internet. I learned about diet modification. I barely ate anyway, but I did discover that if I didn’t eat solids after1-2pm, my pain was lessened. I tried remedies for constipation. None worked. I had to get a prescription. I struggle with fatigue. My hair is falling out which is most upsetting! My stomach is distended to 63 inches. That’s embarrassing to admit, but I’m tired of being ashamed.

My disease took a turn in June 2015. My nausea medication stopped working. I was told it was the best, so no other prescriptions! I was nauseous 24/7 and dry heaving/vomiting. It was awful and took everything out of me. One day I ate nothing and had no vomiting so I stopped eating. I didn’t even miss food. After nine days without a morsel of food, my sister who is a nurse in CA insisted that I go to the hospital for fluids. I had sworn off hospitals after the summer of 2014. I had lost 18 pounds in a month and a half. My husband begged me to go. I was not myself and clearly needed help. The doctor knew all about gastroparesis, was kind, and truly helped me by putting me on Reglan short term. I’m happy to report I’m on new medication which on most days keeps the nausea at bay and allows me to eat. I also have a pain management doctor. We struggle, but I’m moving forward even if he thinks pain is not associated with gastroparesis. He’ll come around because I am so tired of hearing that!

I’ve learned so much about the kindness of fellow GP brothers and sisters. I have the privilege of coordinating G-PACT Send A Smile. It gives me purpose. Members do anything to help those in need. I am so proud of this group and its purpose. It has helped me grow as a person and as someone who has this disease. And of course, I wear green every Friday to promote awareness!