My Story by MJR

On 4/17/2015, I went in for a routine colonoscopy, the Md unknowingly ruptured my spleen. I was rushed to the ER where my spleen was removed. Long story short it took about a 6 months for the incision to heal. I could only drink liquids and went from 116 lbs to 92 lbs and remained there for over a yr. I didn’t know what was wrong with me because I became full on a small amount of food and was incredibly bloated. My chest was tight and food wouldn’t go down.

I found a new GI and we proceeded to do numerous tests beginning with Sibo, then I was given an endoscopy with Botox which alleviated the tightness in my chest. Then I had a cat scan done, gastric emptying test then manometry. At first they thought I had dyspepsia then achalashia then finally I was diagnosed Gastroparesis in Aug of 2017. My GI really wasn’t versed on the condition and said I could eat broccoli and cheese!!! But he did recommend Domperidone which really helped with the nausea and appetite.

I finally went to a nutritionist who was very knowledgeable and helpful. I’m now 109lbs. It’s been an eye opening experience! I was so angry that this happened to me! I tried to sue to no avail. I’m just now starting the process of accepting that sometimes bad things happen to good people. ( I’m in therapy) I used to cry several times a day but I’m down to once every other day or two.

I’ve basically had to be my own advocate because there is very little knowledge or awareness of this condition. We need cures! I personally believe it will take stem cell to heal the Vagus nerve and I’m hoping more funding will go into research. We need awareness. I don’t think people are aware that abdominal surgeries can lead to Gastroparesis or are aware of how devastating it is. Most people just think its like IBS. We all have a story and this is mine. It changed my entire life in an instant.

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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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Not A Textbook Case

I was run over by a tractor when i was five years old, don’t
remember the accident and don’t remember most of my
childhood. I did receive a TBI and was told my organs shifted. My mom was told I would have problems but they didn’t know what they would be.


I have gone back and forth to many doctors and specialists and have heard your too complicated, thats not my field, i can’t treat you, stuff like that, oh and its all in your head! 

Finally after many years found Stanford and my specialists there are finally putting the pieces together.

 

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