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 ..!
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!
Good morning everyone! I’d like to just introduce myself a bit to ya’ll.
I’m 47 years young, married with 5 adult ‘children’ 🙂 My husband and I have adopted our oldest grandson, who is 6 and autistic, making him child #6. THEY are my reason for fighting every day!
In 2007, I had an emergency cholecystectomy (gallbladder removal), but NEVER got better 🙁
I’ve tried everything under the sun to treat my symptoms and have had little luck with any of them. I was a gainer for most of this time until about 2 years ago, then all of a sudden I wasn’t. Nothing in my habits changed. I just started dropping weight. FAST. The last time I weighed myself (bear in mind, this is about 6 months ago, because it depresses me that much!), I had lost 84 pounds.
🙁 But, WAIT! I’m still considered a “healthy” weight, so not much concern from my G.I. there. :-/
I still hear stories of others and lack of treatment because of our current weight. Not worrying about the fact the weight loss is completely uncontrolled and unintentional. I was only told to go seek a therapist and stress management classes. That should do the trick?!?!? Yep, suffering with nausea, vomiting (4/5 x/week), bloating, abdominal pain, insomnia, and major weight loss…. all I need is a psychiatrist and talk it out. 🙁 Needless to say, after seeing 4 different G.I.’s, I give up! I give up on seeing any more doctors who only shake their heads at me, almost in disbelief. You know the looks and body language. 🙁 We feel it. It’s hard and the only thing I can do at this point is fight! I cry daily for those we’ve lost in this battle. But the war isn’t over! This is an epidemic and too many of us are needlessly suffering. I hope this group is only the beginning of turning those stones over and pushing them down the hill. <3 They’ll hear us, if not… they will see us!! <3 We aren’t going away!
I’m Beth, I live in Shelby NC 28150. I’m 58; been on disability due to fibromyalgia since 2007(I’m an RN). Since 2008, have had episodes lasting months/years of nausea, vomiting, pain, bloating; during one of those I lost 80lbs.
I was diagnosed with gastroparesis in January of 2018. Due to flares this year, my quality of life has been severely affected. At times, sips of Sprite and IV fluids is my total intake. It’s exhausting and depressing. I get scared, because doctors and specialists admit, they don’t know much and cannot do much to help.
This is my GP Flare Face; I was in the hospital. Much better right now. I’m thankful for every hour of non-flare!
Also below, my baby Matilda, 2 years old. She keeps me going. I have little family support, but I have her!
I also have fibromyalgia, diabetes, high blood pressure, migraines, IBS, and angina. I’m a disabled nurse.
We all need and deserve better!
Hey Y’all, I just thought I would introduce myself. I’m 26 and live in Troy. I got sick after an emergency appendectomy on Thanksgiving 2010 while I was in Army basic training. I was able to fight off the inevitable and did four years in the Army during which I did a tour in Afghanistan. When I got back, my health really started
I fought and fought and fought for an answer, but it took just over 7 years to get diagnosed with GP. I had a gastric emptying done in 2013 or 2014, which showed delayed transit but nothing was ever done, besides a short trial of reglan, which didn’t help. My main symptoms were nausea, vomiting and pain. It go so bad, that i had to give up my dream career and was medically retired from the service.