Nausea 24/7

Kathy Gordon

Gastroparesis has been being nice to me the last week. Nausea is like always … 24/7. However it’s been mild. I’m holding around 120 lbs right now. I say all this because just a handful of years ago it was really kicking my rear. In December of 2012 I went from 135 lbs which was hard fought to gain back to after my original lose during diagnosis back in 2010. Anyway in a two week span I went from 135 to 82 lbs. My gi was recommending tubes to feed me and one to drain my stomach. I refused as I’m stubborn and didn’t want an operation (this was prior to having my gallbladder removed for my first surgery) and wanted to try to avoid one.

I fought hard daily to control my violent vomiting sessions. My severe nausea and pain we’re horrible. By 2016 I had managed to get up to 120 lbs finally. Then I had my gallbladder removed. My gp got pretty bad again till almost 2017 when I started a approximately year long remission. During which I went up to 178 lbs. In June of 2018 I started losing again and by December I had dropped back to 110 lbs. During that six months I did my best to care for the love of my life as she was losing her battle with metastatic breast cancer that had metastasized and spread through her body. After she passed I slipped into a bit of a depression and let my health go south. Due to my vomiting and non-existent appetite my potassium dropped to a 1.2. For those that don’t know potassium levels should be between 3.5 and 5 to be within normal range. I had no energy and barely left my bed. I ignored my chest pain, low BP, and the numbness in my limbs. I didn’t really care. My primary doctor and the love of many people I care about both known in person and known only from Facebook gave me a reason to get out of bed and get to the hospital and get my health going the other way.

Now here we are in August 2019. I’m alive and fighting the good fight on the bad days and doing as much as I can on good days. Everyday unless I’m to I’ll to be online I’m here in the gastroparesis support groups doing my best to support and love others that are fighting. There are many of us out there. We look like your brothers and sisters. Your sons and daughters, cousins, mothers, best friends, wife’s, and others. Some of us gain while others lose. Some like me experience rapid and drastic fluctuations. With periods of stasis where we can’t gain but also don’t lose.

We have lost many warriors to complications of this and or comorbid diseases. We’ve lost children as young as 3 and older adults. Our lost gp brothers and sisters vary in size, shape, color, age, and more. We remember them and mourn their loss.

Please if you read this and care for me at all do me the favor of sharing my story and other gatroparesis posts. Spread awareness and advocate for awareness by doing so.

If you have questions message me and I’ll do my best to answer them for you and help you understand. We are starving for a cure. We need help spreading awareness.

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I started having stomach problems when I was 8

Rebecca Lucey

Hi my name is Rebecca Lucey and I started having stomach problems when I was 8 years old. I started at pediatric GI doctors and they said that they didn’t know what was wrong with me and that I was just overweight and constipated. They did every test you could think of: upper GI, colonoscopy, HIDA scan, X-ray, cat scan, and finally someone thought to do a gastric emptying scan. Which showed I had gastroparesis.

So I was officially diagnosed in 2012. My doctor put me on Erythromycin for three times a day for three years. Then in 2017 once I saw a regular GI specialist, he put me on Domperidone which didn’t seem to be working and then he just said I was constipated and needed to go make myself throw up. Needless to say I never went back to him. Then I found a new GI doctor who only cared about IBS and that’s the only thing you had wrong with you was IBS (which I don’t have).

A new doctor I found in January 2019 was who was supposed to be very good (if you didn’t have gastroparesis) and I was at the point where I was not able to hold down any food or liquids at that point and was very dehydrated. He thought I was having mental problems. Then I started throwing up blood and they found nothing wrong with me but admitted me to the hospital. The doctor did a gastric emptying scan and still said I had mental problems even when the scan showed that my stomach did not empty. Once I got discharged I found one last doctor and gave him my file, told him my problems and he said I needed a G-POEM surgery.

The surgery helped a lot. Although at the hospital they had me eat a meal the very next day after the surgery and that made me stomach hurt so bad. I was discharged and then two days later I was admitted again for pain and dehydration. All in all the G-POEM helped me very much and I am very thankful for the current GI doctor I have and my mom for putting up with everything.

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Micki & Harvey “my gut”

Micki Hartranft

I had just graduated Nursing school 7/2004, took my exam, interviewed, was hired and started my LPN career with exactly the place and shift I wanted all by 9/7/2004. Things were going along smoothly. Then, Thanksgiving Day 2004, Harvey made his debut.

Vomiting and severe nausea. After 2 weeks of this I went to see my PCP. The testing began. All scans and tests came back ok. Then, he ordered the Gastric Emptying Study. After 3 hours, I was in such severe pain that the doctor ordered it stopped. Nothing had moved. I was started on Reglan. Not a good med.

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Severe Gastroparesis

Rosa Rios

Blessings💚All..✝️🙏 My Name is Rosa Rios (they call me affectionately ROSSIE) I AM from Puerto Rico Island and I am 50 years old. A year and a half ago I was diagnosed with “SEVERE GASTROPARESIS”, I’ve been with this Horrible DISEASE for a long time. I am currently being referred to the U.S. for a G-POEM Endoscopic Surgery. Since all Treatments have been applied in this DISEASE and do not help me much, Nausea, Vomiting, Pain, It is Horrible, Intestines were Affected. And here as in most countries, medical plans do not cover anything, here on the island there is not even a Gastroenterologist for this disease specifically.! I wanted to tell my story about my process ..!

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Gastroparesis is Real

Janna Cross

August is Gastroparesis Awareness Month. To help spread the word, I’m going to tell you my story. When I was 19 (1999) I started having stomach issues. I had an endoscopy/colonoscopy done. I was told I have IBS. Over the years, I have learned to deal with that. It caused a few problems but was otherwise manageable.

On Mothers Day in 2012 I had severe pain in my abdomen. When I finally got to the doctor, she said it was an ulcer. No exam. No tests. So I dealt with it. I managed. A year later, after seeing a new doctor, I was able to get another endoscopy/colonoscopy done. I had not one but seven ulcers all at the top of my stomach. I watched what I ate and managed. The doctor put me on prescription antacids to help. I continued to have severe pains when I ate and for hours afterwards. The doctors never did much.

Finally the pain got so bad that in 2018 the doctor sent me to a GI specialist to get me some help and yet another endoscopy/colonoscopy followed by a gastric emptying study (GES) and blood work. This time I got several diagnosis. IBS, ulcers, an elongated colon, GERD, and Gastroparesis. I had never heard of that one, so I did some research. Or tried to. There really isn’t much information out there. They gave me some papers with a diet. Over half the foods cause me severe pain. No vegetables unless it’s baby food. No fried foods. Mostly poultry, potatoes, rice, and pasta. Even then, sometimes I’ll be in bed for days with stomach cramps, vomiting, constipation, diarrhea, headaches from losing liquids, and generally feeling like I’ve been beat to a pulp.

I look fine. People think I AM fine. Nobody wants to hear about it. Nobody helps. Nobody cares. 4% of the population has this illness. Only 4%. So many people have died from it. There is no cure. There isn’t much research. Doctors don’t know what it is and don’t want to learn how to treat you. You’re considered a hypochondriac. In reality you’re exhausted, alone, depressed, and hungry. The fear of eating is so real. It’s not an eating disorder.

Gastroparesis means your stomach is paralyzed. It CAN’T digest food. You may have good days where you can eat normal foods, but they don’t last long. Sometimes you can eat a certain food but other times that same food will cause excruciating pain. You never know how you will feel. The only medications that are FDA approved have too many side effects or quit working within a few months. Insurance doesn’t pay for treatment. And even though you spend most of your time in bed hurting and unable to eat, disability is almost impossible to get.

Another common misconception is that if you’re not losing weight then you’re not sick. This is such a lie. You’re body can go into starvation mode and instead of using the nutrients that you do get, it stores them. So you actually gain weight instead of losing. Those of us with GP have had to form groups on Facebook and websites to do our own research and support each other because nobody else will. I’ve been diagnosed with GP for a year. Even family and friends don’t support me. I’m expected to live my life like everybody else when in reality I’m in pain and probably throwing up when they’re not looking. I may complain to those closest to me (my kids and my husband) but I don’t tell them everything. I work. I clean house. I cook when I can. I pay bills. I try to do things with them when I can. But inside I’m hurting, screaming, crying, and praying that some doctor somewhere will find a way to help me live through this.

So for all of us who have this, please help raise awareness. Please spread the word. Someone you love may have this and be afraid to tell you for fear you won’t understand. That friend or family member that you never see may be trying to explain this and don’t know how. Or they may be misdiagnosed and not know what’s really wrong. Be there for them. Be there for us! Love us even though we can’t do what you do. Love us even though we aren’t who we want to be…. a healthy person. Gastroparesis is real! Help us spread the word!

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