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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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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