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96% EF and URQ pain, worse since HIDA scan
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96% EF and URQ pain, worse since HIDA scan

I've been struggling with digestive issues and debilitating pain for a year.  I'm  a 5'4”, 135lb,  33 year old female. I have a healthy and active lifestyle.
I've been researching hyper active gallbladders as I have been experiencing many symptoms that seem to be associated with gallbladder issues. I've had many tests and seen 2 gastroenterologist's. Sadly they have been unable to diagnose me. I'm frustrated with my body and feel as though my life is on hold.
According to my most recent Gastroenterologist's report; I have been extensively evaluated thus far with normal LFT's, CBC,TSH, lipase, US ab, HIDA scan and EGD demonstrating gastritis and esophagitis with biopsies negative for H pylori and celiac disease, as well as colonoscopy with random colon biopsies without pathology. The most recent tests I had ruled out parasites, Hereditary Angioedema/intestinal angioedema and celiac (twice)  I am waiting on the results to rule out acute intermittent porphyria.
I've suffered from IBS many years and am accustomed to the diarrhea, cramping and gas pain associated with the syndrome. I am on Hyscosamine and find it helps to control the cramping associated with the IBS.
Early spring of last year I suffered an episode of pain. Hours following a fatty meal.  An extreme pain began in my upper right abdomen. The pain wrapped around the back and under shoulder.  I had difficulty catching a breath.  After several hours the pain subsided.
I have had a few of these episodes since and live in fear of it happening again. I'm constantly nauseous and eat a very bland diet of mostly starches. I experience constant pain on the right side of my abdomen that has been far worse since my HIDA scan in December (CCK infused over an hour, symptoms mildly duplicated, 96% EF) The pain is so severe now, when I fold my abdomen, that I hold my breath to complete simple tasks like tying my shoes.
Thank you for taking the time to review my situation.
2827584_tn?1340583296
You are clearly a very tolerant patient - I can't belive the extent of the workup that you have endured. With typical gallbladder symptoms and at least some reproduction of symptoms with CCK, the literature would support cholecystectomy. This is based on data from the Cleveland Clinic. I understand that you have been the ongoing project of two GI docs but have you seen a surgeon at any point? At some point, they will run out of tests. If they are down to checking for intermittent porphyria I think they are close. Time to remove the gallbladder.
9 Comments
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Avatar_m_tn
My test results came back negative for Porphyria. I'm being referred to the University of Michigan.
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Avatar_m_tn
I can't thank you enough for the service you provide and your timely response. I didn't really make it clear that I saw a GI doctor last spring and a second one this winter due to a change in my PCP. I am uninsured and have been paying for my medical bills from a Flexible spending account. This may may have contributed to not having seen a surgeon as of yet. I must admit I have done some reading on your work and noticed you attended U of M. I am have been referred there for the next step in diagnosis and wondered if perhaps you could provide some guidance on who may best suited for my care? I live in Michigan but without insurance I do have the freedom to travel for medical care if there is a benefit to being seen out of state. Thankfully I have an extremely supportive network of friends and family helping me finance this en-devour. It means the world to feel heard. Thank you again.
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2827584_tn?1340583296
I would start with a local surgeon. A gastroenterologist that I have a lot of respect for would periodically refer a patient that he thought needed a "therapeutic trial of cholecystectomy." In other words, everything had been ruled out but clinically, the symptoms were consistent with gallbladder disease. The vast majority of these folks were significantly improved post op.
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Avatar_m_tn
Dear Dr. Watters,
I am writing again following my appointment with the GI doctor. While I still haven't seen a surgeon and firmly believe that is where I will find relief at this point, I wanted to seek the input of a Gastroenterologist that has experience with these gallbladder issues and could answer some questions before deciding upon surgery. Sadly it is beginning to appear no such Gastroenterologist exists. I saw a doctor today who not only was unable to answer my questions but doesn't accept that removing a gallbladder absent of stones is EVER a solution. In fact he doesn't order HIDA scans for his patients as he finds them “useless”.  I was hoping you could answer a couple of questions I have regarding so called hyperactive gallbladder disease. I had a abdominal ct with contrast today. I simply can't keep circling the issue without reason to rule out my gallbladder anymore.

I understand that the reproduction of symptoms is considered the key factor to predicting resolution of symptoms post GB removal. Do high ejection fractions tell us anything remarkable regarding GB function?

Why is there so little evidence to support removal of gallbladder in patients with high ejection fractions?

What should be considered a normal range for ejection fractions?

Are there any figures that indicate what percentage, patients fall into regarding ejection fractions? (example, 1 of 10 have a EF above 75%)

There seems to be a great deal of controversy regarding cause for GB removal, why?

Does GB malfunction often/ever coincide with other illnesses or syndromes?

I've read of a higher instance of GB malfunction in Celiac patients is there a relation to other autoimmune diseases as well?

Is there a way to find out if a particular doctor in my area has familiarity with such GB issues?

My tolerance is waining and I really must find relief soon! As always thank you for your time.
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2827584_tn?1340583296
I have been seeing these patients for 20 years with great interest. I wa unable to find any paper in the literature relating to high EF gallbladders until about 5 years ago. Part of the issue is the scarcity of these patients. I have perfomed about 3500 cholecystectomies while only 50 have been in patients with high ejection fractions. You lost me on the reasons for another gastroenterologist opinion. Although intelligent and well trained in their specialty, the best information regarding the indications for, and expected outcomes of surgery come from a board certified surgeon. As we wer told in training - that's why the program is so long. In my case, twice as long as if I had been a gastroenterologist. Your question regarding normal range is hard to answer because of wide variations in how the test is done. The variable that significantly alters results is the time period that the CCK is infused over. The literature supports longer infusions of 45-60 minutes while it is quite common that it is given over only 2-3 minutes to speed things up. I have searched the literature attempting to determine a high end cut off ejection fractions but have been frustrated.  I think that a very important question is whether gallbladders with high ejection fractions are actually hypercontractile in the patient or if there could actually be a shortage of CCK in these patients and, therefore, their sensitivity to a standard dose is increased. We can now measure CCK in the blood but I have yet to see any data relating variations of intrinsic levels to any disease process.
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Avatar_m_tn
Thank You so much for your reply. It wasn't my intent to see another GI doctor this is who I was referred to on short notice. I am without a doubt visiting a surgeon next. I just hope I am taken seriously and can find relief soon. My concern over the lack of information comes from a desire to understand my body and make a well informed decision.Thank you for being the only informed source I have found. What an excellent service you are providing. It is absolutely clear to me now that I have to take action and seek having my GB removed. Your replies have been very informative and I simply can't thank you enough. I will report back after I have seen a surgeon.
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Avatar_m_tn
I feel I have certainly done my due diligence, and have all the information that I can have before talking to a surgeon. I am just now realizing that I have been looking for answers in the wrong place. I have asked my PCP for a referral to a surgeon. Thank you again for all of your help!
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Avatar_m_tn
The surgeon is removing my gallbladder 2/25! He is cautiously optimistic this will resolve my symptoms. Thank you so much for your help Dr. Watters!
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