Biliary Puns

I’ve been going through symptoms pretty much the whole year. After a bunch of blood tests and scans and bouncing around I got a 0% EF on HIDA and have an appointment with the surgeon soon.

My rant is more about how this affects us. I’m a 41 year old active Dad who is usually the rock of the family and I’ve been in bed some days exhausted and not able to eat and losing weight and feeling like less of the rock. Hard to exercise and stay active. Not to mention the surgery isn’t even scheduled and then I have to recover and pray I go back to “Normal”

I truly hope getting the GB removed fixes it, just trying to stay positive and thankful my wife and father are picking up my slack. 😔

Can anyone else relate? Just looking for some positivity.

My EF rate was almost 100%, Was wondering what everyone's primary sypmtoms were? Mine are primarily ruq pain and nausea that accompanies the pain. The pain happens when I eat fatty foods, and if I try to eat high fat foods, I'll also get mild bloating, mild heartburn, and dizziness from the pain. It's primarily the pain and nausea that has kept me from living a normal life.

Curious what fellow hyperkinetic gb sufferers experience as far as symptoms go?

EDIT: My PCP reviewed my HIDA more closely and agreed that it's hyperkinetic and wants me to see a surgeon asap! Let's get this bad boy out so I can get on the road to recovery!

Hey everyone! I recently had a HIDA scan which determined that my gallbladder is not functioning properly. I am currently waiting to get in with a surgeon. My primary symptoms are nausea, bloating, indigestion, and very low energy. What has been the symptoms for other people? Also, if anyone has had surgery due to this, did it help?

Age: 73

Sex: male

Height: 5'11"

Weight: 210

Race: Caucasian

Duration of complaint: first seen on CT scan in October

Location: left lobe of liver

Any existing relevant medical issues: 7 year esophageal cancer survivor

Current medications: Dexilant

Background: my husband had stage 3b esophageal cancer T3N2M0 in 2014. He had concurrent chemo and radiation followed by a left thoracoabdominal esophagectomy. He had complications and was in ICU for a month. Post surgery biopsy found 3 additional positive lymph nodes that did not show up on scans, but mop up chemo was not done due to his weakened condition.

Here's the MRI result. I don't quite understand the impression. His oncologist is out of town until next week. We're calling his gastroenterologist tomorrow. What should we ask? What tests are next?

TECHNIQUE:  1.5 Tesla scanner. Imaging without and with IV contrast (liver protocol)

Multiple comparisons, most recently the CT of 12/16/2021 which showed a hypodensity in the medial left lobe.

FINDINGS:

The hypodense linear areas seen in the medial left lobe on the CT do appear to be due to mildly dilated intrahepatic ducts within the extremely atrophic left lobe.

There is no evidence of a centrally obstructing or other solid mass in this area nor elsewhere in the rest of the liver.

There is no intrahepatic duct dilatation in the right lobe nor is the extrahepatic biliary tree dilated and no filling defects are seen within it.

The diffusion-weighted sequence does show restricted diffusion throughout the atrophic left lobe which may be an indication of biliary stasis and the mild duct dilatation in the left lobe was not apparent on previous CT scans as recent as 10/28/2020 such that the possibility of an intraductal obstructing lesion or otherwise occult mass should be considered.

No gallstones, gallbladder wall thickening or pericholecystic fluid.

No splenomegaly or masses.

No adrenal or solid renal masses. Chronic left renal cortical cysts unchanged from previous.

No ascites, adenopathy or pleural effusion.

Chronic moderate sized hiatal hernia unchanged.

IMPRESSION:

Although there is no identifiable mass in the left lobe of the liver, there is increasing prominence of the entire atrophic left lobe biliary tree and nonenhancing restricted diffusion throughout the lobe possibly indicating an occult mass or intraluminal obstruction due to stone or stricture within the left intrahepatic duct system.

Correlation with lab work

Hi all, just wanted to post my experience with hyperkinetic gallbladder as I've had a hard time finding information about it and hope this can provide insight for those googling in the future. I am located in Ontario, Canada, where hyperkinetic is unheard of.

I am scheduled for laparoscopic cholecystectomy this Friday. I will make updates in this thread as I recover. I've weighed all my options and believe removal is worth the possible improvement in my quality of life.

My story, as briefly as possible:

• Lifelong issues having urgent diarrhea after eating fatty foods.
• Lost significant weight (>100lb in 1 year) on a diet, and then regained (>100lb) within 2 years, which may have triggered the current GB issue.
• 2019 - suddenly developed severe upper right quadrant and epigastric pain, severe nausea, severe vomiting, severe diarrhea. Was hospitalized. Underwent testing in hospital, but they couldn't find anything. Had nausea so severe it could not be controlled. Was NPO (not allowed to eat). Continuously vomited pure bile and eventually blood (due to excessive vomiting). Late 2019 was given a HIDA scan via a GP referral as he suspected dyskinesia. When I got my result I knew finding help was going to be a challenge.
• Spent 2020 in misery - highlighter yellow diarrhea 8-14 times daily. Developed perianal skin infection due to excessive diarrhea. Severe, chronic RUQ pain, nausea, vomiting. Pain goes through to back and into right shoulder. Epigastric burning. Had to carry bags with me to vomit into while trying to drive to work. Vomiting at work. Only eating soup, crackers, ginger ale. Waking up and vomiting pure bile in the night. Unable to digest food properly, especially fibrous vegetables. Was prescribed zofran for severe nausea.
• Spent 2020-2021 seeing a GI and undergoing extensive testing (see test list and results below). He did not 'believe' in hyperkinetic at first. Was prescribed cholestryamine powder to bind bile. This resolved my diarrhea, which was my GI's first clue re: hyperkinetic.
• Late 2020 was prescribed Pantroprazole (to stop reflux) and colesevelam tablets (to bind bile) rather than the powder. GI agreed I had a 'functional gallbladder disorder' where the gallbladder was 'overactive' after consulting with colleague in Toronto. Begged to be referred to surgeon, as even though I was controlling symptoms, my pain never went away. Was referred to surgeon to discuss options.
• Spoke to surgeon and provided papers/studies indicat

54 Female 17 EF waiting to see surgeon wed .. for 2 weeks things have got much worse! I feel flu like and I have now constant pain and soreness in that area.. I can’t eat much last night ate chicken and rice and it cause such painful bloating.. I feel like I might have to switch to a liquid diet .. did anybody have this ?

I’ve had off and on RUQ pain since April. It’s a dull ache, pretty mild pain to be honest, maybe 2/10. I’ll have the feeling every day for weeks at a time, and then it might go away for a week or so before coming back. A lot of times I’ll notice a lot of gassy rumbling in the area as well at the times I’m having pain.

I’ve had all kinds of tests. First was an ultrasound to check my liver because my liver enzymes were a little elevated. No gallbladder issues noted on the ultrasound. Also had an abdominal CT which was completely normal.

I went over 6 months without answers to this pain, and finally switched gastroenterologists. New doctor ordered a HIDA scan which noted an ejection fraction of 9%. Have a consult tomorrow with a surgeon.

I’m hesitant to have surgery because this pain is very mild and doesn’t disrupt any of my normal activities. I’m more or less just thrilled that I’ve likely got an answer to what’s been going on. Gastro diagnosed me with biliary dyskinesia.

Anyone have similar symptoms/diagnosis and have their issues resolved after surgery?

Update 10/3/21 - Hi everyone! Just wanted to give a final update. I had an endoscopy on 9/22/21. The doctor didn’t find any ulcers or anything else alarming. There was inflammation in my stomach, so he took biopsies to test. The doctor said the inflammation could’ve been from me not eating (currently 101 lbs) and the stomach acid just sitting there. He also said that gallbladder disease can progress to the point of making me nauseous even when I’m not eating fatty / greasy foods, so that was reassuring to know that my symptoms aren’t that out of the norm. The pathology report came back positive for mild gastritis, but negative for everything else. The surgical office was satisfied with those results and I was finally able to have my surgery scheduled for 10/5/21. I’m so happy to finally get this over with! Thanks to everyone who provided feedback. You all were very helpful!

Update 9/10/21 - I was able to see a GI doctor today for a consultation. After asking about my most recent symptoms (tightness / tension in throat, excess mucus, post nasal drip, burning / gnawing sensation in middle of stomach), she thinks I may have GERD, esophageal inflammation and possibly an ulcer. She prescribed Protonix, hoping that it will minimize the symptoms, so I’ll at least be able to eat. She’s going to get me in for an endoscopy to examine my GI tract and stomach / to see if the medicine worked before the month is over. From there, I’ll have a better idea on when I can schedule the gallbladder surgery. Has anyone simultaneously experienced GERD / gallbladder issues?

Update 9/8/21 - My surgical consult was this morning. The surgeon wants me to see a gastroenterologist to rule out any other stomach / digestive issues because not all of my symptoms are consistent with gallbladder disease. He thinks I may have an ulcer because of the burning / gnawing sensation in the middle of my stomach. This just started happening recently though and I think it’s a combination of having excess stomach acid + not really eating. I essentially told him that the in-person consult was a waste of time because this info could’ve been relayed via phone last week and I could’ve had the gastro visit prior to today. The surgeon is also booked for the next month and a half, so after I have the gastro visit, I’ll consult with a different surgeon. I understand the thought behind wanting to make sure the surgery is necessary, but it’s frustrating to feel this unwell and not see an end in sight 😢.

Hi

Hello. I am a 23 year old slim woman who is otherwise healthy.

To keep it brief, starting in July 2020, my appetite depleted. Foods did not sit well with me, and I felt indigestion. Beginning in September 2020, I started seeing my PCP about the issue. She put me on omeprazole which had no effect. She then had me do an abdomen ultrasound, which looked completely normal. Then, she referred me to a gastroenterologist, who did an endoscopy in February 2021. It also was completely normal. Finally, the gastroenterologist had me do a HIDA scan, and that gave the answer: biliary dyskinesia. My thirty minute ejection fraction is about 15%. I was referred to a surgeon, who did suggest that I do a surgery, but due to family hesitance of the removal of an organ, I backed out.

However, I am absolutely exhausted of my symptoms. Over this one year of issues, I have lost 10 pounds. I will feel no appetite for or repulsed by foods, almost completely arbitrarily. Recently, nausea has been occurring as well.

Does anyone else have symptoms (arbitrary appetite loss for certain foods, regardless of how fatty they are) like mine? Does this truly sound like biliary dyskinesia? Does gallbladder removal surgery help the symptoms or worsen them? These questions, I'm sure have been asked before, but I am desperate. I have been struggling to find people who experienced the symptoms that I am feeling. No one else in my family has this. I feel very alone and helpless and frustrated, and there are days I just want to get rid of my gallbladder and days that I am fearful of making such a big decision.

Thank you for reading!

Just had my HIDA scan today and EF was 92%. I’m waiting for my doctor to call and discuss this further, but this was just my PCP, and I don’t see a G.I. doctor until January. What is the typical treatment for this? I’ve been having a lot of URQ pain. Sometimes it is worse than others.

For the past year, I've had the medical community tell my my pain was all in my head until I pushed for a HIDA scan two weeks ago. Turns out I have biliary dyskinesia with an ef of 0% and am scheduled for surgery on Monday.

Does anyone else with biliary dyskinesia have joint pain as well? Truthfully I have a running list of symptoms that the doctors just shrug their shoulders at like burning mouth (no sores), lower right quadrant pain (I've seen others with BD mention this), red bumps that will appear on my cheeks,, and joint pain mostly I my wrists along with standard gallbladder type pain

Do you know of any supplements that can help with biliary dyskinesia?

Apparently, doctors don't seem interested in researching what causes this illness as long as they can rely on cholecystectomy (gallbladder removal surgery) as a "treatment" method.

I have had bouts of stomach issues here and there (just thought it was bad acid reflux or intolerance to some food) but during the last week of July I started waking up really nauseous and had diarrhea almost every morning but it would usually go away early afternoon. I also had discomfort/slight pressure my left side so I thought maybe it was my spleen. I had so many tests done - covid, pregnancy, multiple blood tests, stool sample, ultrasound of my thyroid and my spleen/left kidney, CT scan, all came back fine. Last week I had a HIDA scan and have have an ejection fraction of 21% and told it was biliary dyskinesia. Everything that I’ve read up on mentions excruciating pain and horrible vomiting but I’m generally okay for the most part, aside from some discomfort and acid reflux. I was still referred to general surgery since ejection rate is so low and the possibility of issues in the future. Surgery is scheduled for next Tuesday. All this to say has anyone had a low ejection rate with minimal pain but still had surgery?

[Edited to fix spelling/grammar mistakes]

I have had problems with constipation and bloating for 5 years. I was diagnosed with SIBO, went on the SCD diet, took antibiotics and improved symptoms greatly (got rid of chronic fatigue, bloating, etc). However, still couldn't digest things like almonds, coconut, raw veggies. Upon trying to add foods back in, I still can't digest raw veggies, potatoes, haven't even tried coconut. Almonds seem okay now. I sometimes have trouble with peppers, even when cooked. Haven't been able to eat gluten/dairy since 2003.

ETA: Also have trouble with super fatty foods, but the above are more notable/important for me because they are harder to avoid.

This week I had a HIDA scan with an EF of 94 percent. I am wondering if this could be at all related to my digestion issues (I know it is related to my pain in the gallbladder area).

I heard an interesting story from the doctor that if the gallbladder was removed, the biliary tract (Bile duct) would expand and replace the gallbladder in a few months (I didn't hear exactly whether it was a Cystic duct or a Common Bile duct. Looking at the process, some cystic ducts remain.), but I couldn't find any papers related to it. Is it possible for biliary tract to replace gallbladder?

Hi all!

Yesterday, after so much begging to my gastro to let me have a gallbladder function test, they finally fucking did it. Because my country doesn't have CCK testing equipment, we had to do a ultrasound - fasting - eating fatty meal - ultrasound scan. They measure the gallbladder before and after to see what's happening.

I was mentally prepared - given my 6 year run with tests and doctors telling me things were 'normal' - for the ultrasound tech to tell me ' No, nothing showed up,, your gallbladder is normal.' But no, he told me that I had a sectioned up gallbladder(?) and that my function was less than 50%. He couldn't tell me by how much but he wrote down 'structural abnormality and hypokinesia biliary.' I cried.

I called up my father and told him I was right all along. In the past year he started to sit in on doctor's visits because he thought I was making stuff up. He would always side with the doctors. So many years of hearing doctors say "oh, it's because you have depression." "This is just IBS, just take buscopan again, take miralax.' "It's stress, nobody has gallbladder problems at your age.' It's been so fucking lonely and frustrating dealing with this on my own. Watching my body deteriorate. Having people minimize your symptoms. I've been upping my antidepressants on my own in order to deal with the lack of energy and depression that this has given me. I came home and cried at how much I've been holding it together for the past 6 years, trying to heal myself, taking so many supplements, losing out on opportunities and friendships because I had zero energy, not dating because who would want someone as sick as me.

I have to take my results back to the gastro on Tuesday, and I'm honestly dreading it. She's gonna probably put me on PPI's or god knows what else useless medications they've *been* throwing at my symptoms. If she tells me to eat like a rabbit for the rest of my life I will just go straight to a surgeon. If my father is against it I will take a loan for private care if I have to. It's honestly either surgery or I will kill myself.

I'm so at the end of my rope with not being listened to or taken seriously. Does anyone have tips on how to advocate for surgery/ self-advocate in general? Thank you for giving me the space to talk about how I'm feeling to people who understand. There is so much going through my mind right now (and I have to turbo - write a thesis!) so this helps a lot. Wish me luck for Tuesday.

My partner just got her HIDA results back showing 0% function. Is this an emergency? Have any of you had this? How soon did you get surgery and how has your recovery been? She's very scared and just needs honest opinions.

EDIT: She got a surgery consult for next Wednesday. Does anyone know what she's supposed to do for food until then? She can't even eat a fruit/kale/spinach smoothie without pain. I'm worried for her.

Female 24 Australia 89kg 162cm

I was admitted to hospital two weeks ago today with chest pain. I waited about 5 days in hospital, wasn’t able to eat or drink (due to throwing it back up) and had an ERCP in which a biliary stent was put in place and a 5mm gallstone was removed. I was discharged with the diagnosis of Choledochithiasis and Hypokalaemia.

Upon discharge, and a day following ERCP I was able to keep down a sandwich and fluids for the first time. I was told I would need to return within two weeks to get my gallbladder removed. Once I got home I started experiencing chest pains which were central and radiated to my back. The pain sometimes runs under my last right rib, about the area I had pain when I had a gallstone, just slightly more central. I rang a nurse hotline and they recommended I see I doctor, which I did. The doctor said it was common and that I was just experience regular post procedure pains. Unfortunately this pain has not subsided. Adjusting my died to remove basically anything fatty has helped but has not eliminated the pain.

My chest area is still tender to touch. Something as simple as bringing my arms down rapidly to my sides which forces my breast to move, causes me pain. I often cannot spend longer than an hour walking before I need to lean on something for support or just head back home. This makes it difficult to complete any daily tasks and is kind of miserable.

My issue is that this pain is ongoing, and also despite being told by several doctors and my surgical team that I would need to return in a couple of weeks, ive just recieved a letter in the mail stating that my gallbladder removal has been changed from a category one to a category two. I’m not sure how it works in the US but in Australia, category one procedures are a couple weeks wait, and category two are several months. This has me a bit worried purely based on doctors telling me I’d need to return in a couple of weeks and also having to live with this pain for several months, I’m wondering if this is ok? Is it safe to have a stent in for several months?

I’ve booked in with my doctor but I wanted to ask here to tie me over until then bbecause I’m extremely anxious and nervous. I did not have a nice experience with this hospital. I was being told I would have to eat or they’d send me home, despite food causing excruciating pain and vomiting, being left alone in my room for several hours without obs, sleeping on the floor because I was in pain and no nurs