Patient Comments: Choledochal Cysts - Experience

Question:

Please describe your experience with a choledochal cyst. Submit Your Comment

Comment from: Kathleen, 45-54 Female (Patient) Published: December 13

I was born with an IVA choledochal cyst but in the 60s, ultrasounds weren't capable, or I am unsure if they were even around, to detect birth defects. I recall stomach issues growing up and my illnesses worsened as I got older. I have autoimmune problems so a lot of my pain could be explained away. Earlier this year, issues with gallstones appeared! Doctors said if it wasn't for the gallstones, he's unsure if I would've even decided to go to the doctors and if the cyst would've been detected before it turned into terminal cancer.

Comment from: MomofThree, 25-34 Female (Patient) Published: January 12

I had sever upper abdominal pain. Sharp, burning sensation that brought me to my knees. I would literally hold my hands on my stomach area and rock back and forth until pain stopped. I had several emergency room visits, all they would do is treat pain and send me on my way. Pain could occur weekly or go months with no pain. Finally after three years of on and off, I again had episodes, and I went to see a gastroenterologist. He completed an ultrasound and EDG and sent me to a larger hospital equipped to deal with my situation. From what I understood, turns out I have two pancreatic sphincters (Oddi dysfunction). As a fetus you have two, and then they fuse together after birth. Mine however did not. Inside one of the pancreatic bile duct was my choledochal cyst. The doctor removed the cyst and put in a stent to open up bile duct to allow bile to flow. That was 2011. Now 2018, after several months of upper abdominal pain, I went back to visit the original gastroenterologist. I gave him my symptoms and he thinks there could be some scar tissue that is now giving me problems as my pain is not as bad (yet) like it was before. Next week he will do an ultrasound and another EDG (esophagogastroduodenoscopy) before sending me back to the surgeon who completed the surgery.

Comment from: Suzanne, 25-34 Female (Caregiver) Published: December 21

My daughter was diagnosed with a choledochal cyst in utero. When she was 3 months old, doctors removed the cyst (the size of a softball), her gallbladder, her appendix, and did a Roux-en-Y. She had a blockage the following year. She is now 25 years old and has stones in her bile duct. The doctor tried to perform an endoscopy to remove the stones (knowing it would be very difficult, but still tried). He was not successful. She currently has had one rendezvous procedure, is home with a biliary catheter and a stent in her bile duct to try to correct some stricture, and will be scheduled for another rendezvous procedure after the holidays. We are hoping the doctors will be able to remove the rest of the stones with this next procedure.

Comment from: Kat, 55-64 Female (Patient) Published: April 18

I have no symptoms of choledochal cyst. Found it by chance when I got an MRI for my back. They did an endoscopy and now they want to operate, however I have very bad insurance.

Comment from: Aazumi, 19-24 Female (Patient) Published: November 21

I had a choledochal cyst in liver when i was 20 years old. Now I’m 24 years old. I had an operation. It was successful. I was having normal life. But nowadays I started having a little pain in my scar in the abdomen. When I bend and dance or do any heavy work I feel pain in my abdomen. I’m getting fat and my tummy is increasing abnormally.

Comment from: Robert, 55-64 Male (Patient) Published: May 14

I was told that I have a cyst on my pancreas. I have pain in upper abdomen and find it painful to eat. I’d like to know what can be done.

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