H. R. 3396

The Functional Gastrointestinal and Motility Disorders
Research Enhancement Act of 2019

I miss my old life

What is my daily life like living with gastroparesis? I wake up usually in pain ..Its like being stabbed in my stomach ..I’m always weak from Malnutrition issues..I drink my breakfast which is a nutritious shake..if I don’t vomit I have burps with an after taste. I feel like I ate a bowling ball for… Read more “I miss my old life”

You don’t know what to expect next

What is my daily life like living with gastroparesis? Constantly in pain, bloated, nauseous, so weak everyday is a challenge. Doctor’s don’t understand you they think it’s all in your head because you might look fine on the outside but in truth inside is a rollercoaster. I get depressed cause I can’t do what everybody… Read more “You don’t know what to expect next”

A basic catch 22

What is my daily life like living with gastroparesis? Pain, nausea, vomiting, diarrhea and or constipation, malnourished, headaches, body hurts, fatigue, muscle cramps, blood sugar bottoms out, hair breaks off and or falls out, kidney failure, UTI’s double vision, anxiety, panic attacks, dizziness. Every day is different..a basic catch 22..you never know what you’ll be… Read more “A basic catch 22”

Every day is different and unpredictable

What is my daily life like living with gastroparesis? Every day is different and unpredictable. Today may have been a decent day and I left the house. Tomorrow, I may be puking more times than a drunken 21 year old who rode the tilt-o-whirl a dozen times too many. Today, I may be wishing to… Read more “Every day is different and unpredictable”

A never ending battle within my own body

What is my daily life like living with gastroparesis? It’s like a never ending battle within my own body! My family worries all the time! Smelling, seeing and even the thought of food makes me nauseous. Every event involves food, even watching television, there’s food! Some days I just end up throwing in the towel,… Read more “A never ending battle within my own body”

Food is terrifying

What is my daily life like living with gastroparesis? I wake up each day to nausea. Food is terrifying. Malnutrition is even more terrifying. We are battling our own bodies every day.

My new normal is not normal

What is my daily life like living with gastroparesis? My new normal is not normal. I cannot work. I’m on disability, have been since 2014. I am fed via Jtube about 50% of the time, though that fluctuates with flares. When I can tolerate foods by mouth, they are very limited in quantity, and always… Read more “My new normal is not normal”

Never take for granted what is before you

What is my daily life like living with gastroparesis? It’s like playing cards. You have an ace in the hand. You feel like you may win today only to find out that ace is a club to knock you down. Nauseating moments, pain sucking the energy out of you, and being hungry and full at… Read more “Never take for granted what is before you”

Severe waves of nausea

What is my daily life like living with gastroparesis? I’m on disability at the age of 36. Couldn’t even get regular SSDI because I never accrued enough work credits. I’m sick everyday to some point & degree. I live with my parents now and my Mom is my caregiver. I live in constant pain to… Read more “Severe waves of nausea”

Gastroparesis robs us

What is my daily life like living with gastroparesis? Gastroparesis robs us of so much.

Gastroparesis runs my life

What is my daily life like living with gastroparesis? Gastroparesis runs my life! I can’t make any plans, can’t eat, bloated, debilitating nausea. Lost 36 pounds in a few months. This disease is horrid!

The constant fear and worry never stops

What is my daily life like living with gastroparesis? I don’t have GP myself but, as the parent of a daughter with GP I can say this: every day is a roller coaster ride. The constant fear and worry never stops. The knowing about the pain, bloating, nausea, etc., looking and seeing that she’s up… Read more “The constant fear and worry never stops”

Living in debilitating pain

What is my daily life like living with gastroparesis? Living in debilitating pain along with feeling nauseated all day. As well as the littlest things you do wears you down to nothing!

Daily life is physically challenging for me

What is my daily life like living with gastroparesis? Daily life is physically challenging for me. Each morning I wake up with lack of energy, unrested from restless sleep IF I had any sleep to start off with, along with nausea & a cramping abdomen from trickling a total of 200mL of pedialyte into my… Read more “Daily life is physically challenging for me”

Lots of planning around food

What is my daily life like living with gastroparesis? Lots of planning around food, especially if I’m going out for the day or traveling. I hate getting sick away from home. Cancelling plans at the last minutes due to GP related pain. Avoiding events that are food focused.

Trying to keep nausea and acid reflux under control

What is my daily life like living with gastroparesis? My daily life is trying to keep nausea and acid reflux under control so I’m able to eat small amounts of food throughout the day. Life for me is to try hard to be really intentional with life choices and food choices to keep things as… Read more “Trying to keep nausea and acid reflux under control”

Good days we grab, and bad days we somehow get through

What is my daily life like living with gastroparesis? My daughter has GP (now changed to global dysmotility). Some days she does OK, and we might do something. Whatever the something is, it will wear her out. Other days she is bloated and distended, in pain, beyond tired has a headache. Friends her own age… Read more “Good days we grab, and bad days we somehow get through”

Sick like I have to throw up all day

What is my daily life like living with gastroparesis? I always have nausea, abdominal pain and sick like I have to throw up all day. I force 1/2 a cup of food two or three a day. Very hard to move around because I feel weak. Threw up the other day with diarrhea since then… Read more “Sick like I have to throw up all day”

I went from working to being worn out

What is my daily life like living with gastroparesis? My daily life went from working my tail off 7 days/week to suddenly no energy. No nothing. Just sick. At that pesky little vagus nerve …bradycardia and tachycardia. Also Dysautonomia and Ehlers-Danlos Syndrome. It has meant I went from working (in my 30s) to being worn… Read more “I went from working to being worn out”

Nauseous but hungry at the same time

What is my daily life like living with gastroparesis? Nauseous but hungry at the same time is awful. But a flareup is even worse! I don’t have a lot of energy most days. Sometimes walking hurts my stomach, like I can feel every vibration of every step, in my stomach, so I have to walk… Read more “Nauseous but hungry at the same time”

This disease has weakened me

What is my daily life like living with gastroparesis? Too limited my Life by Tiredness, weakness from Nausea, Vomiting and pain. This disease has weakened me, and damaged other organs. My Daily Symptoms are WEAKNESS, Dizziness, Fatigue, and Gastroparesis Treatments has damaged my Heart. Specifically the Ventricular area, having that damage, the Treatment is suspended.… Read more “This disease has weakened me”

Every day is an adventure

What is my daily life like living with gastroparesis? Every day is an adventure because I never know how I will feel.

I never know what the day will bring

What is my daily life like living with gastroparesis? My daily life is me laying on the couch or bed, stinking from not having the energy to shower. Taking all day to do a few dishes, begging people for toilet paper, etc.. because I cannot work. It causes daily anxiety because I never know what… Read more “I never know what the day will bring”

The smell of food cooking makes me sick

What is my daily life like living with gastroparesis? NO LIFE! I did enjoy flower gardening just too hard to keep them up now with the nausea 24 hours a day .The smell of food cooking makes me sick so fixing my husband something is hard then I cannot eat what I fix for him.… Read more “The smell of food cooking makes me sick”

Exhausted and dehydrated daily

What is my daily life like living with gastroparesis? Pain every day. Nausea if I eat.. Nausea if I don’t. Exhausted and dehydrated daily.

Simply exhausted

What is my daily life like living with gastroparesis? Simply exhausted from this disease. You never know when you’re going to have a good day 💚

Like being locked in a prison

What is my daily life like living with gastroparesis? GP is like being locked in a prison with no key.

It’s like getting severely sick and never getting better

What is my daily life like living with gastroparesis? It’s like getting severely sick and never getting better. I wake up nauseous and go to bed nauseous, constant pain – the screaming out loud kind and never being able to go far because you don’t know how you will feel.

Alone about 90% of the time

What is my daily life like living with gastroparesis? I’m now alone about 90% of the time. No one including my family bothers with me because I’m “sick”. I’m nauseous and very bloated the minute I eat. I get very tired because of my meds. No one understands GP no matter how much I explain… Read more “Alone about 90% of the time”

It’s Hard To Make Plans

What is my daily life like living with gastroparesis? I have anxiety, depression, fatigue, muscle cramps, pain, nausea, diarrhea, & I never know what my day to day will be like , It takes a lot out of me when I shower & do things.. It’s hard to make plans because I never know how… Read more “It’s Hard To Make Plans”

It’s like living on a roller coaster

What is my daily life like living with gastroparesis? It’s like living on a roller coaster with no end in sight. And one that has so many twists and turns you can’t ever get two steps ahead of it.

Never making plans without a contingency plan

What is my daily life like living with gastroparesis? I spend a majority of my days in bed, eating what I can because I have to, not because I am hungry or desire to. Never making plans without a contingency plan. Pain and nausea dictates my schedule, and an outing has to be scheduled before… Read more “Never making plans without a contingency plan”

I don’t have a life anymore

What is my daily life like living with gastroparesis? Laying in bed looking at 4 walls with a puke bucket beside me along with my medications.. I don’t have a life anymore.. May I add this is a short version…

Malnutrition makes it hard to do anything

What is my daily life like living with gastroparesis? Malnutrition makes it hard to do anything. If I use a little energy today, it takes 3 days to get it back. I’m always tired and feel like I’m wearing a lead blanket.

I never know if it’s going to be a good day or a bad day

What is my daily life like living with gastroparesis? I never know if it’s going to be a good day or a bad day. I do all the right things and still sometimes have flares that are debilitating. I am sick constantly so that I have learned to work and live with a degree of… Read more “I never know if it’s going to be a good day or a bad day”

I feel more like a burden as days pass

What is my daily life like living with gastroparesis? For me it is as if I lost all control of my life. I can’t even call it living, it is more like war. Constant pain, nausea, and vomiting. NPO and TPN dependent for 7 years come October. I didn’t only lose the ability to eat,… Read more “I feel more like a burden as days pass”

Nausea, extreme fatigue, stomach pain and swelling

What is my daily life like living with gastroparesis? Nausea, extreme fatigue, stomach pain and swelling, side effects from meds including dizziness, drowsiness, blurred vision, memory loss. With all this, I find my anxiety goes up as I worry about carrying for my family, not being able to work, and alot of days, not even… Read more “Nausea, extreme fatigue, stomach pain and swelling”

I have to take my day minute by minute

What is my daily life like living with gastroparesis? I have to take my day minute by minute. It begins every morning with being woken up by nausea. Then the vomiting begins. I try my best to get dressed and drive to work (having to pull over multiple times some days). Constant fear of eating.

Tiring and painful

What is my daily life like living with gastroparesis? Tiring, painful and full of multiple every week appointments.

Bad days are spent in bed

What is my daily life like living with gastroparesis? I’ve had GP for 14 years 9 months. I’m on disability. After 2 years I was able to go back to work. Only 10-20 hours a week. I wake up tired, nauseous and in pain. I take my meds 6 of them, 2 anti emetics, 2… Read more “Bad days are spent in bed”

Waking up with the flu and going to bed with the flu

What is my daily life like living with gastroparesis? Waking up with the flu and going to bed with the flu. Exhausted, weak, chronic nausea with the inability to puke. Horrible stomach pain. I have no energy and no desire to get out of bed, let alone take care of a house, my family and… Read more “Waking up with the flu and going to bed with the flu”

Nausea and fatigue are a constant

What is my daily life like living with gastroparesis? Nausea and fatigue are a constant, pain is a surprise every day..never know when or how much…

Exhaustion, nausea everyday, and vomiting on bad days

What is my daily life like living with gastroparesis? Exhaustion, nausea everyday, and vomiting on bad days. Losing friends and feeling like a burden to your family. I have an amazing supportive family, but we still struggle at times as this is such a frustrating disease. Not getting to go outside on beautiful days because… Read more “Exhaustion, nausea everyday, and vomiting on bad days”

Too scared to eat

What is my daily life like living with gastroparesis? Too scared to eat at times, painful bloating, no energy. My every other day life since being diagnosed.

Nauseated from a smell

What is my daily life like living with gastroparesis? Never knowing if I’m going to just be nauseated from a smell, just trying to eat (if I even get hungry), whether eating will make me sick, if for no apparent reason that I will get very sick or be in pain.

Continuous pain

What is my daily life like living with gastroparesis? I’m in continuous pain all day long.

Living life with Gastroparesis is a guessing game

What is my daily life like living with gastroparesis? A guessing game, can be vastly different from day to day, week to week. Very difficult to plan anything or work or just to live. Some days it is an effort to just breathe and sometimes I have few symptoms and I am very grateful. My… Read more “Living life with Gastroparesis is a guessing game”

Sometimes I am in denial

What is my daily life like living with gastroparesis? Acceptance is my biggest problem, because I think sometimes I am in denial, but my body continues to remind me that I cant tolerate a lot of food intake, my system doesn’t want to accept fluids so I stay dizzy and dehydrated too much. How could… Read more “Sometimes I am in denial”

Gastroparesis: Fighting for Change seeks to empower the gastroparesis community by providing information and education, hosting support groups and programs, and leading awareness and advocacy efforts.  We seek to unite those with gastroparesis to discuss our vision, goals, needs, services, and resources and endeavor to make a difference for our GP community by educating patients, providers, legislators, researchers, and the general public; spreading awareness of our disease; pursuing beneficial changes in legislation and policies; engaging in fundraising efforts; supporting new treatment options and research; and working toward solutions to our most pressing issues. 

Please support H. R. 3396, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019, which was introduced in the House Energy & Commerce Committee by Rep. James F. Sensenbrenner, Jr. (R-WI), on June 20, 2019. This bill would expand research, increase funding, and promote awareness and understanding of devastating functional gastrointestinal and motilityRead more "H. R. 3396, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019"
Step Therapy National Day of Advocacy Support the Safe Step Act November 13, 2019 On Wednesday, November 13, 2019, the Digestive Disease National Coalition (DDNC) will coordinate a National Day of Advocacy to encourage federal legislators to address step therapy reform by supporting the Safe Step Act (H.R.  2279/S.  2546). Throughout the day, advocates fromRead more "S. 2546 / H.R. 2279 (Safe Step Act)"
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