- CASE FILE
I'm begging for someone to listen to me. Severe epigastric/RUQ/LUQ Pain since 2014. Undiagnosed, Hospitilized over 25x since 2014.
ABOUT THIS CASE FILE
I am not asking, Im pleading for help for someone to listen to my case to try to figure out what has been going on since 2014. I feel I can't get anyone to listen to me. Its like Im screaming in a room full of people but no one will look up. I am tired of living in uncontrollable pain. I am pleading with anyone to please listen to me, I do not know where to turn to, to get the help that I need. This illness has taken so much from me and my family. My children have to miss out on activities because I can no longer go to far due to pain, diarrhea, or extreme fatigue. I can no longer work and havent been able to for years. My children are beginning to develop extreme anxiety due to mommy being sick all the time, they get scared that I will die because I'm screaming in pain. It is impacting the way they function. I'm at the point where I'm no longer functioning. The pain is becoming so distracting that at times I leave the sink on or a light on because I cant think of anything else because the pain is so severe. If not for me but please help me so my children can have mommy back, so they do not need to live in fear.
July 2014, I woke up in the middle of the night with severe right upper quadrant pain that spread to my epigastric region and into my right breast. I went to the emergency room my labs were normal, my CT did show nonalcoholic fatty liver. I continued to have these flare ups with severe pain, and nausea. I would continue to go to the emergency room where I would be turned away because all my labs would be normal with the exception of my ALPs which have been elevated since this all began. In May 2017, my pain became so severe I couldnt get out of bed. I began to have extremely fatty stools, vomiting anytime I ate or drank, pain within 15 minutes after drinking. I then went to a GI doctor again, where they decided to do a HIDA Scan. It showed that my gallbladder was functioning at 3 percent, and that it was regurgitating bile (releasing bile then sucking it back in). I then had my gallbladder removed 2 weeks later. Gallbladder had no sludge, no stones. Upon waking up I experienced severe pain to the point it was alarming. I notified the nurse, the nurse said it was from the surgery , but it did not feel normal. Two days after having my surgery, I began to have the same symptoms prior to the surgery but even worse. Diarrhea was becoming so severe that I was going 10-12 times a day. I then had an attack that made me fall to my knees, I struggled to breath because the pain was such a squeezing, pressure, sharp feeling in my epigastric region. I was sent to the hospital my heart rate was in the 170s, my pancreatic enzymes were midly elevated in the 300s, they then sent me home. Three days after being discharged, I had another attack so bad that I fell and tipped over my shopping cart in the store. I could barely walk, the squeezing, sharp feeling in my epigastric area into my back and under my right breast were so severe I thought I was going to die. I was then rushed to the emergency room. My liver enzymes were all elevated, my pancreatic enzymes were more elevated from the last visit to the hospital. They then did testing , two bile leaks at the pancreatic and heptic duct were discovered. I then had an ercp to place 2 stents in to help heal the tears. I continued to have severe pain in the hospital, they were unsure why my pain was so severe to the point I am screaming and crying out in pain. I continue to have these flare ups. Two months later I ended up back in the hospital with severe pain. There was a pocketing at the gallbladder fossa, which interventional radiology drained. It did not resolve and there is still a small sac where the gall bladder is. There is also a cyst on my liver near the common bile duct. They have been coming usually between 31-36 days, these flare ups are lasting 2-3 weeks at a time. A few days prior to the flares I tend to get very distended, my belly will look like I am 9 months pregnant. I will get bouts of diarrhea that are very watery and fatty. Im having extreme sharp, achy, squeezing feeling pain in my back directly behind my epigastric region, in my epigastric region in my RUQ, and LUQ. I will get extremely gassy. I am getting severe drops in my blood pressure, the lowest 39/47 where I was in and out of consciousness, I experience tachycardia during flares, my heartburn flares up during these flares, I'm losing my hair, Im always low in vitamin d. My teeth are beginning to chip. During severe flares at times my palms will begin to itch. I experience a lot of shortness of breath during flares. I begin to have pain within 15-30 mins after eating. I try to remain NPO for days while these attacks happen, and attempt to drink water which helps some. I'm experiencing severe fatigue. Sitting up right or on all fours with my abdomen hanging does relieve some pain. I am also experincing changes in my common bile duct. They keep growing in diameter, prior to surgery they were at 2mm, then a year after 6mm, then now 10mm.
Diagnoses: Tachycardia, bilary diskenisia, Exocrine Pancreatic Insuffiency, Poly Cystic Ovarian Syndrome, Endometriosis, Raynauds Phenomenon, Pre-eclampsia, non-alcoholic fatty liver, bile leaks at the pancreatic and liver ducts, low lipase, high cholestorol, gastritis, vitamin deficiency, liver cyst, steatorrhea, elevated ALP, fast transit within small bowl less than 10 mins, IBS, migraine.
Symptoms: Distention, Bloating, Steatorrhea, Diarrhea, Vomiting, Nausea, squeezing/stabbing/sharp pain in epigastric, RUQ,LUQ, in back directly behind epigastric region, lower part of sternum, extreme fatigue, tachycardia, low blood pressure during flares, itchy palms , belching, acid reflux, shortness of breath. Heaviness like someone is sitting on my epigastric region. Geographic tongue. Hypoglycemia
Lifestyle: Nondrinker, Nonsmoker.
Medications: Creon, motility drugs, antibiotics, metoprolol, lorazepam, gabepentin, cholestrymine. Creon does help bulk stools up a bit, cholestrymine helped with diarrhea at one point and then as this continued to get worse it stopped helping even on the highest dose.
Doctors do not take me seriously. They believe me crying out in pain is due to anxiety, they think me fearing of going home after being discharged is anxiety because I am afraid of passing out on the toilet- which is a common occurrence. They tell me nothing is wrong other than what Ive been diagnosed with. I have been laughed and mocked at and say my pain is not real, and "I cannot be suffering because I am overweight." I have not had the best care, or doctors that will listen. It is evident they do not listen because my files contradict what I say .