- CASE FILE
Gallstones with no gallbladder!! Im a 37 year old mom of 3 with cirrhosis of the liver caused by years of being ignored by doctors!
ABOUT THIS CASE FILE
At 15, while cheering at a football game, I experienced true pain for the first time in my life when I had a gallbladder attack on the field. Few days later, my gallbladder is removed and my parents were told I was fixed! Who would have thought that one surgery would set me up for a life time of confused doctors and long hospital stay all while rapidly destroying my liver. At age 20 I became pregnant with my daughter, Stella. Besides morning sickness I felt ok at first! But around 14 weeks I started itching constantly. Every part of me itched. But the WORST was my palms and soles of my feet. The doctors told me my skin was caused by the stretching of my skin... the suggested MULTIPLE times to take an oatmeal bath and to stop over reacting. But nothing stopped the itching and just continued to get worse and with no rash, No evidence, no one believed me! I thought i was losing my mind! I was up all night crying and scratching so hard i was bleeding! Finally the doctors did blood work. Turns out I early onset of Cholestasis of pregnancy. I had bile in my blood stream that was making me itch and was extremely dangerous for my daughter. I was put on (ursodiol) meds and with an extremely high risk of still birth the longer I carried, had a c-section at 36 weeks pregnant. Stella weighed only 5.3 pounds but she had strong lungs and besides a little jaundice, healthy as a horse! I remember laying on the table and the doctor asking if he should tie my tubes. They told me it was the safer
Decision and the risk of still birth would increase every pregnancy. But I was only 21! And all I ever wanted to be in life was a mother!!! So I told them no. After her birth, the itching stopped almost instantly. So I stopped taking medication. And concentrated on raising my beautiful daughter who I was obsessed with.
￼I was ok for about 2 years until I got pregnant with my son Eamon. This time we knew I’d get ICP but with medication and knowledge we assumed we’d be safe.
Around 9 weeks, I started getting extreme stomach pains. I went to doctor and they said indigestion, heart burn, morning sickness, etc. But it wouldn’t stop and only continued to get worse. I was told AGAIN, that I was over reacting. That i should go drink a milk shake and to stop calling them. This went on for weeks until they were frustrated enough with my constant complaining to finally order testing. I remember being at home, crying in pain, trying to eat a milk shake like the doctors told me to do, when the same doctor who told me that called me, frantic telling me to get to ER immediately. Turns out I wasn’t over reacting! I had severe￼ pancreatitis and was at risk of not only losing my baby, but dying myself.
The doctors assumed, like most would, that since I had my gallbladder removed, I would no longer get stones. Unfortunately for me, I do. And with out a gallbladder, they get stuck in my bile ducts and cause pancreatitis.
So at 12 weeks pregnant, I was hospitalized and not allowed to eat or drink, not even water, for 7 days. I received my first ERCP to remove the blockage. And eventually was sent home
In tact. Baby and me ok! The rest of the pregnancy was fine. Itching was tolerable with meds. Had Eamon at 36 weeks via c-section, and after about a week in the NICU we were home happy and healthy.
2 years and wedding, and a new home later, I became pregnant with Declan. Pregnancy seemed easier with knowledge of ICP. Until about 32 weeks. Declan wasn’t moving much and the doctors were worried about stillbirth, so i spend 16 days in the hospital on best rest, being constantly monitored. By 34 1/2 weeks the doctors felt he’d be safer out and in the NICU then in me. So I had a c-section, for the 3rd time in less then 6 years and after cutting through massive amounts of scar tissue, the doctors once again suggested I get my tubes tied. And this time, I agreed.
2 months home with 3 kids under the age of 5 and my stomach starts hurting again. Go to ER and they said they’re not really sure what’s wrong, but it looks like appendix may be inflamed, so they removed it.
Less then a year later, I’m in pain again, more fighting with doctors until I get imaging that shows I have another blockage in my bile ducts. Another ERCP is done, but this time, I woke up during it. Nothing is as frightening then waking up GAGGING on a tube that’s down your throat. Definitely a thing of nightmares.
So this goes on for years. Stones, blockage, ERCP’s (that i continue to wake up during, though for some reason doctors never believe me) I’ve lost track of how many I have had but I eventually start waking up post surgery with worse pancreatitis and having to spend additional time in the hospital.
During all this I am also dealing with endometriosis, lower back pain, depression, while raising 3 kids and trying to work. During one job, I had gotten my period which was accompanied with the worst cramps of my life. I was bleeding so heavy and so often I was dropping HUGE blood lots. The size of silver dollar, huge. After 10 days of this I finally called my gynecologist. And after 23 days of this they finally agreed to do an ablation. But, my gallstone problems but an end to that.
I had went in for the pre-op doctors visit. I had been feeling a little sick to my stomach and maybe a little feverish, but just assumed I had picked something up from my kids. The doctor immediately told me he could not do the ablation because I was bright yellow with jaundice and he send me straight to the ER.
I spent the next 11 days in the hospital. No food, no water, no explanations. they didn’t see any blockages this time, on mir or cat scans but blood work was very bad with extremely low white blood cell count. Eventually they decided to do a liver biopsy. But with levels being so bad, they couldn’t put me under. SO, while wide awake and only some sedative to keep me calm, they cut through my jugular vein and removed 3 samples from my liver. I felt EVERY thing. Every time they put the scope down, every cut they made and pulled back up out my jugular. I just remember being so scared and in so much pain and being held down by nurses so I wouldn’t move. Something I don’t wish my worst enemy to go through.
Eventually from fasting, my levels lowered enough to go home. Liver biopsy confirmed I had cirrhosis but no one was sure what had caused it since I wasn’t a drinker.
Weeks later we get into a liver specialist in Philly. He looks at the imaging of my live and says that he has never seen anything like it. That it is so swollen and misshapen and is hanging far to low. He figures all my blockages that caused pancreatitis has done immense damage to my liver. he makes plans to preform a surgery that would bypass my bile ducts so that I would no longer get blockages.
But, once again, I get sick before that surgery can even be scheduled. This time the specialist suggests I go to a different hospitals ER since I hadn’t had luck with my local ones. So I do, and even though they don’t see a blockage, they proform another ERCP to see whats going on. Turns out I had so much small stones, like sand slush, it was causing a blockage but it wasn’t visible on any imaging.
After this the liver specialist said I would be fine now and surgery wasn’t needed. I have asked a million times what is causing the stones, but no one knows. They say I am just a “PRO FORMER” and I will get them for life. They put me back on Ursodile to try to break them up to flow with out causing a blockage. But I still get them.
Recently I discovered that though its not common, ursodile can cause weight gain in patients who use it for long periods of time. Since I’m already obese, even though I hardly eat, I decided to stop taking it. Figured I stopped after each pregnancy so it should be fine. I was wrong. 2 weeks after stopping I landed back in hospital. with the same, now familiar pain.
Even after looking over my chart, and seeing all my previous issues and levels…Some doctors still don’t believe me and think I’m over reacting!! This last time, like before, imaging showed no blockages but my levels were all out of whack again. After 4 days of crying in pain, I felt a pop, and the pain lessoned. My levels started to regulate. So, they wanted to send me home. I cried in frustration that I needed to be fixed. That I couldn’t handle going through this all the time. I said “ you didn’t do anything to fix me! why can’t you help me! You did nothing!’ And the young resident looked right at me and said “well I’m pretty sure you can’t get these drugs on the streets”
So, after years of being told I’m over reacting, that I”m faking it, and then being a accused of being there for drugs, after she watched me whither in pain for days and saw my levels were bad, I’M DONE with doctors!
I made one final trip to another specialist at UPenn… he told me I have secondary biliary cirrhosis. but he has no Idea why I continue to form stones and suggested I continue to take my meds that are making me fatter and fatter and I need more and more of, until I have another episode. Then we will see what can be done.
I don’t want to have ANOTHER episode!!!! I don’t want to continue to be in that kind of pain!!! Just continuing the damage to my already severely damaged liver when I’m only 36!!!! Its not fair! I am sick of doctors a band aid on me and passing me off to someone else to fix!