You’re not alone out there and neither is G-PACT. Whenever we can we work with others who can help raise awareness or improve the quality of life of our community. That’s how we became friends with Mighty-Well.
Mighty Well is on a mission to turn sickness into strength by transforming the patient experience.
“As patients and caregivers ourselves, we know there’s room for improvement. We know how cold a hospital room can get and how awkward it is to pull out a massive pillbox in class or at the office. It’s why we started Mighty Well. We create the products we wish we’d had: functional and stylish apparel and accessories that you can wear with confidence.”
As a way to say hello to the G-PACT family, Mighty-Well offers this discount on their products… “GPACT10”
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.
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.
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 firstname.lastname@example.org and we’ll help you tell it.
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.
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…
15 People With Gastroparesis Describe What It Feels Like
G-PACT partners with several great groups who are also trying to give voice to the complexity of gastroparesis and who raise awareness all the time. Today, we feature an article from our friends at “The Mighty”.
For a person with gastroparesis, sitting down to a meal isn’t always the joyful experience it is for many others. Gastroparesis is a syndrome in which the stomach doesn’t contract and empty properly, causing chronic symptoms like nausea, abdominal pain, vomiting and bloating.
The pain and discomfort may not be easily understood by loved ones and acquaintances, so we asked our Mighty community with gastroparesis to describe what it really feels like. Living with gastroparesis isn’t easy, and a little empathy for its challenges would go a long way.
Here’s what they told us:
“It’s a daily battle of ‘Do I eat and be in pain, or do I not eat and be nauseous?’” — Em Hawkings
“With my gastroparesis, I feel like throwing up 24/7. I get severely nauseous, and that feeling is always there.” — Heather Beldo
“Per my 3-year-old old: It feels ‘icky, my tummy feels angry at me. Food makes it angry.’ It breaks my heart.” — Jackie Henning
“It feels like I ate glass shards… the nausea is so bad I try to throw up to get some relief.” — Diane Doman
“It comes in shifts: completely full, worst stomach flu ever, post-stomach-flu, satisfied and not hungry, hunger pains that lead to cramping and vomiting bile; those are the only feelings I have. That is without any food at all on total parenteral nutrition (TPN).” — Kate Sytsma
“I constantly feel like I have the stomach flu. The nausea is a constant, too, with waves of stomach cramps and pain.” — Jodi Duke
“It feels like there is a lake in my stomach. When I eat, I feel like I can’t breath because of the pressure pushing upwards.” — Patricia Chamberlain
“It’s ‘I ate way to much food’ fullness, plus ‘I drank too much alcohol’ nausea and vomiting, plus what feels like a muscle cramp in your abdomen that you can’t stretch out. On the emotional side, it feels isolating and frustrating because society is so centered around food and eating. Not being able to eat can really mess with your head after awhile.” — Amanda Baldassari
“After I eat I feel like rocks are in my stomach, and the nausea is like having a never-ending stomach bug.” — Joan Elizabeth
“It feels like being a balloon that’s being filled with water… except the tap never turns off. The water keeps running, the balloon keeps getting bigger until it bursts. That happens every single day.” — Sabrina Cannella
“When I eat, it feels like I swallowed a brick of cement, like it sticks to my system for days. Then I have the pain, and it feels like someone is punching me in the gut over and over and over.” — Laura Vago
“It feels like living in the Twilight Zone. You have doctors telling you to do one thing and your body telling you another, and you think it’s all in your head. Then a complication pops up… it’s never-ending.” — Taylor Schmitz
“It feels like your belly is a glass constantly full of water, and if you try to put anything else in the glass, it will overflow. Even just the smallest amounts of food can send you overflowing into nausea, pain, vomiting, etc.” — Grace Shockey
“For me it’s constant pain, nausea, vomiting and abdominal bloating that makes me [look] pregnant. The pain is unbearable, [there is] nausea whether you eat or not. Go days without food. It’s hell!” — Rachel Price
“It’s like not knowing what to do and always having to deal with pain.” — Tammy Branch
If you have gastroparesis, how would you describe what it feels like? Let us know in the comments.
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 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.
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.
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.
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!
Secure the contact information for your Senators by visiting www.Senate.govand 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]
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.
Tomorrow may be too late. Do this today! Silence is no longer an option.