“Trust Your Gut” Warns Patient with Chylomicronemia Syndrome

May 2, 2017

By Cassandra Bush

Hello, I’m Cassandra and I am 23 years old. I began experiencing symptoms in 2015 of what felt like a burning sensation on the area of my left rib.

On March 5th 2016, I went out to the bar to celebrate my sisters birthday with all of my sisters.Five days later I went to the doctors office.. as I was having a bad stomach ache/pain. I was ordered two weeks out of work, and was to have an xrays. I was assessed with “hypertriglycerdemia, sporadic” and with abdominal swelling, mass and lump. Blood tests were ordered, and a liver panel test was ordered, with a follow up within a week. The X-rays were done and nothing came back–everything was fine. Despite this, my discomfort never seemed to leave. I was getting stomach upsets, and diarrhea. My diet wasn’t the greatest either.

Somewhere between the follow up appointment, and the blood work… nothing ever showed up. I was taking gemfibrizol for cholesterol, fish oil for cholesterol, rantidine for stomache acid, and birth control pills to regulate my periods. I had been taking them since I was 14 for missed and abnormal periods. A few months passed. I was coming home from work and sleeping a lot. One night, I distinctly remember drinking a wine cooler, and remember feeling sweaty and hot. I took my temp and to my surprise it was 99.00, I thought… the alcohol must be raising my body temperature. I took it the next few nights and the same thing. I thought okay maybe just a stomach bug.

This burning pain started to feel like a bubble was lodged under my rib. One that I couldn’t seem to get rid of. My back hurt, I thought I had a lot of gas build up. I began to do away with the alcohol on weekends, and take Tums and Gas-X extra strength. My symptoms were not being relieved. I did some Googling, I came up with things such as gastritis, pancreatitis, etc. When scrolling across pancreatitus I was thinking, there is no way on earth it could be that. I thought for sure gastritis. All I remember is around June 6th, I went to work one day feeling the worst. I did not feel good at all, and got about two hours in, when I could no longer work. I was very nauseous, couldn’t eat my lunch, couldn’t focus, sweating, dizzy, and my back and abdomen just hurt. I felt like I was half crunched over. I left work to go home, and sitting nor standing did anything to relieve the pain I was feeling. I then called my doctors office to see what I should do.

I explained to them where I was feeling the pain, it was all over my back, widespread into the left side of my abdomen and even shoulders, it was so much that standing nor sitting were helping. They called me back and advised me to take 2 ibuprofen and if things weren’t better in two days to call them back. After hanging up the phone, disbelief flooded over me. I took the 2 ibuprofen, waited maybe 20 minutes, and that’s when I knew. Whatever this was, was not going away, something was wrong and I could feel it in my gut, and I knew what they had advised me to do, was the worst thing they could have told me, especially without even evaluating me first. Right then and there, I decided to get to the E.R. By the time I got into the E.R room to get examined I was dry heaving and throwing up. They took my blood, had me pee into a cup and gave me a GI cocktail to coat my stomach, which I also threw up. I was sent for a CT. Not too long afterwards, the doctor came in to tell me the shocking news ” You have acute pancreatitis, and your triglyceride levels are at 11,000. I was admitted. 

They gave me morphine every two hours. The pain was horrendous. Every hour after the morphine was given, I was literally whimpering. I felt like a rock was crushing my body, everything just hurt and hurt bad. After three weeks, I’d been through two hospitals, two different feeding tubes, insulin, and suffered severe acute necrotizing pancreatitis, a pulmonary embolism (Birth Control), and pneumonia, with a slightly englarged spleen, and developed a pseudocyst. The cyst is now gone. I have many different papers stating my condition is this or that, I just found the one with Chylomicronemia syndrome the other night. I am on a low fat diet, many pills, and do the best I can with it. I can never drink again, and would never even think of it. I still feel the burning here and there, even now… but I’m determined to keep this at bay, and to keep it from coming back. It was the worst experience of my life, and the only time I’d ever spent at the hospital. I wake up everyday now, more greatful than ever to be here. The birth control attributed to my severely high triglyceroid levels, so I will never be taking those again. I wanted to put my story out there, in hopes maybe someone may find it, and just to say… if something is wrong, trust your gut instincts, you will know.. and thankfully for me… my gut instinct is part of the reason why I’m here today.

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