As a LPN I was never taught about GP in Nursing School

Flora Santagata

Hello, My name is Flora, I’m 55 years old & was diagnosed almost three years ago with GP. I was an LPN & it was never taught in nursing school.

When I was diagnosed, I thought they were wrong & was in denial for over a year. But finally doing some research & joining the FB page for Gastroparesis, I had to face it that this is my life now. I dropped down to 100 lbs, & threw up constantly with bloating, pain, & constipation. No matter what I ate, drank or crushed up, it wouldn’t go away. I believe that I had gotten GP from several abdominal surgeries. After
having a total hysterectomy at the age of 21. I thought that was it, no more problems. But soon afterwards I started getting sick like morning sickness or the flu.

Then in 1994 I had a bi lateral mastectomy with reconstruction. Then I had my gallbladder taken out because it elongated because there was no
female organs to keep it in place. All the while, I just thought I caught the flu more than the average person. After a while my family said something is wrong, you can’t get the flu every 3 weeks.

I finally found a PCP who said I think you have GP. He sent me for the GES test, & I flunked it. I now know how to watch what I eat, I can’t eat over 4 0z. at a time & usually eat every other day. Once I put my full attention to this disease. I found a Gastro Dr. who treats people with GP. She suggested I try Domperidone 10 mg, 3 x a day. Since I have taken it my weight has gone up to 140lbs, I my flares are shorter & I’m not in the ED.

I also had gotten SIBO. that is when food sits too long in the intestinal track & you get an infection. 2 rounds of different anti’s & it was gone. Not forever, because I went 7 months without it & I think I over did it with the false sense of I’m healed & ate things I shouldn’t have had. So back on the anti’s. This is like round robin. I’m not sure how long I can stay on the Domperidone, but I know without it, I wouldn’t be here today. FDA needs to approve this drug in the States. I will fight for this until my last breath!

I’m fighting everyday to keep living. For me, there is no other option. This is my goal & to spread the word that this a digestive disease, not in my head. I don’t need a psychiatrist, I need for the healthcare profession to admit that this is a disease & they need to find a cure! Treating my symptoms will work for now, but how long will it work? We need a cure!

I’m a fighter & will continue to fight this battle. It may not be everyday, but I will not give up! I am a human being, not just a diagnosis. I want to be treated as a human. If your reading this, I will take it that you too have been diagnosed with GP or you are a Dr. who want’s to help me & my family of GP. Thank God I am a positive person or else I don’t know where I would be. I know one thing for sure, If you are told It’s in your head, or there is nothing they can do for you, then FIGHT! We all must be proactive in our own healthcare now. I know it’s like a full time job doing that, but it’s where I am right now. Thank you for taking the time to read my story, God bless, & let’s find a cure ASAP!

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I Had Lost 84 Pounds

Tami Bankson
Tami Bankson

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!

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My GP Flare Face

Beth Davis
Beth Davis

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!

Matilda

I also have fibromyalgia, diabetes, high blood pressure, migraines, IBS, and angina. I’m a disabled nurse.

We all need and deserve better!

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Fairly New To Diagnosis

Brenda Friedrichsen

Hello. I am fairly new to this diagnosis. Finally was referred to a good gp last year that had me tested for gastroparesis with the food delay study. I always thought it was gerd but it was more. I have been able to be asymptomatic at times and other months I can’t feel good no matter what. Exercise really helps but it’s hard to stay motivated to stay with it. I’m 53 and they said they don’t know how I got it but I did. Not diabetic. I am married with 5 kids and 2 grandkids.

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I Continued To Lose Weight

Hi my name is Tiffany Kimsey, here is my story of being diagnosed with GP.

It started back in 2014 when my brother in law noticed I was losing weight like crazy. He said something to my sister. We thought it might be to the change that I went through. In September of 2013 I moved in with them. I continued to lose weight. My PCP decided to check me for diabetes by the grace of god that was negative. In January of 2016 I ended up in the emergency with horrible stomach pains. They couldn’t find anything wrong so they sent me home and told me that if it got worse to come back, so by that weekend I was worse. So back to the emergency room I went, they did find out that my colon was infected so I was put on antibiotics. Buy this time I was still loosing weight. My nurse practitioner told me that she wanted me to get tested for Gastroparsis, so I did. In April of 2017 I got the final diagnosis of GP.

This has not been an easy road for me. In the last five months I ended up having my galblabber removed. I am really blessed that I don’t have it bad. I don’t have any pics of me before the diagnosis to now.

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