Gallbladder removal when all scans negative
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In July I was admitted to hospital with severe upper middle and right abdominal pain, I developed diarea and high fever and was diagnosed with intra abdominal sepsis, I had ultrasound, CT and endoscopy all negative. Sepsis was treated with iv antibiotics. Blood tests showed anemia and slight elevated lipase. After discharge I continued to have upper right pain mainly at night and sometimes a low fever I was admitted to hospital again at the end of 2013 again with pain and high fever which lasted for nearly 2 weeks, again it was treated with iv antibiotics,I had further ultrasound and mrcp again all negative, again bloods showed anemia and my ALT levels were elevated. Had sigmoid flexi scope which showed some patchy inflamation and biospy suggested ulcerative colitis. I was discharged with the diagnosis of unexplained pyrexia. My GI consultant was not convinced about the colitis causing the upper pain and arranged a EUS which was negative and a colonoscopy which showed no inflamation this time and I am waiting for biospy results but looks unlikely to be colitis causing all this. My Gi referred me to a surgeon who has mentioned taking out the gallbladder despite all tests being negative, but he says it is my decision to make and it may not cure the problem. I am so unsure of what to do and would appreciate any comments and suggestions.
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blondewitch
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Georgie66
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Seb14
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Seb14
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lruth Seb14
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tommyboy77 Seb14
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I just came across the thread and was wondering what you decided.
I was in the same boat as you.
Everything came back negative, which included:
Bloodwork
3 ultrasounds
2 endoscopes
H Pylori
Stress test
The only thing that came back out of the ordinary (to the surgeon that removed my gallbladder, but not the first surgeon) was my HIDA scan.
The second surgeon said she saw at least 2-3 cases a week where all the tests are negative but the gallbladder is bad. She specialized in biliary issues. She laid out everything for me, all the pros and cons. In the long run, I decided to have it removed and it was the best decision I made. I don't have any more issues, Exocet the occasional loose BM and phantom pain, but other than that, I'm well.
On a side note, the pathology on my gallbladder showed that it was chronically diseased and had about a dozen stones in it they weren't picked up on the ultrasound.
john23620 tommyboy77
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tommyboy77 john23620
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Hi John.
I went through the same thing you did. Tests for everything, (heart, h pylori, etc.) and I had a gallbladder attack in mid April of 2015. I was admitted. Bloodwork and ultrasound came back negative. Had a HIDA scan the next morning. My EF% was 78. The surgeon said "that's normal. I'm not sold on your gallbladder being bad." I found out after doing research and getting a second opinion that anything about 65% on the HIDA scan is considered hyperactive. The second surgeon was shocked I still had my gallbladder. 3 weeks later, it was gone and other than minor issues here and there, it has been 1000% better.
I do live in the US.
john23620 tommyboy77
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tommyboy77 john23620
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John, I was 37 when my issues started and they came after I lost a lot of weight.
Of course I felt trepidation. I was worried that "what if this doesn't solve my issue?" But after 6 months of getting nauseous and dry heaving after everything I ate, whether it was fatty or not fatty, and going through every test imaginable, I was willing to try anything.
The surgeon I dealt with on my second opinion was amazing. She specialized in biliary issues and she said that she dealt with at least 2 cases a week like mine, where all the tests come back normal and yet the gallbladder is still bad. She looked at my reports and came across the HIDA scan and was shocked I still had my gallbladder. She went over the pros and cons of the surgery. She was extremely thorough. She told me there was a 75% chance of the gallbladder removal solving my issues. It was better than being sick 100% of the time. She left the decision up to me.
The surgery was a breeze. It was done via keyhole (as the Brits call it). The gallbladder came out fine. No complications. I had a liver biopsy done as well (I have a fatty liver) and had some excessive bleeding that wouldn't stop, so I was under for almost 2 hours. I was kept overnight for observation. Normally it's an outpatient procedure.
During the pathology, they found stones in the gallbladder that never showed up on the ultrasound and my gallbladder was diseased.
As for alternatives, I tried eating low fat and bland, but it didn't help at all.
Some words of wisdom. If you do decide to go through with the surgery, make sure for your recovery, you have stool softener, and prune/plum juice and drink LOTS of water. because the painkillers will block you up.
john23620 tommyboy77
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and the ejection fraction was calcuated at 50%. Im still sure its either my liver, gall or pancreas based on the symptoms and location of the pain, but I dont know what to do now!? What do you recommend?
john23620
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I was just reading the American Journal of Gastroenterology (1998) and it defined results as follows:
1) "Normal" with 60% or more ejection response to stimulation
2) "Borderline" with 50–59% ejection response
3) "Abnormal" with less than 50% ejection fraction after stimulation.
It said In the healthy volunteers of its study, a mean ejection fraction of 81% was observed
I got exaclty 50%, so had I got 49%, my gallbladder function would be considered abnormal. Are these measurements they use correct and relevant for todays testing? If so, I think I found my problem
tommyboy77 john23620
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John,
After my gallbladder attack and the doctor saying 78% on the EF was "normal", I started to do some research and came across a few studies where people had symptoms of gallbladder attacks, but their EF's were over 70% and in each case they removed the gallbladder and I think in all but 4% of the cases, the removal solved their problems. And in other forums I posted my issues in, I got multiple responses that anything under 35 is considered biliary dyskensia, 35-60/65 is considered normal range, and anything over 65 is considered biliary hyperkinesia.
I went to the surgeon on my follow up visit armed with this information and he almost laughed it off. Then wanted me to be on the BRAT diet for another month "to see if that calmed it down." I had been on the diet for almost 2 months at that point.
I started doing some more research online, looking for surgeons who were highly rated, and a name kept popping up for people who were going through what I was. The surgeon dealt with biliary issues. And she knew what I was going through and suggested the best thing to do since I had had so many tests done already, was to remove the gallbladder. She laid out pros, cons, complications that could arise, everything.
john23620 tommyboy77
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Hi Tommy,
I don't trust most of most medical tests. Sure they can be a good guide, but are certainly not the authority on health, and are also very likely to mislead the doctor and patient. They look fancy and generate a lot of money for the inventors and administrators, hence their prominence.
I found this post in another forum RE HIDA : "My son is having these exact same problems. He began experiencing RUQ pain last April, along with nausea and back pain. He had a CT scan, an U/S and a HIDA scan. The HIDA scan showed an ejection rate of 29%. We saw two surgeons. The first surgeon was an adult general surgeon who wanted to take out his gallbladder. The second was a pediatric surgeon (my son is 15) who did not want to take it out. After 2 months of non-stop doctors appts. the pain finally went away. My son is having the exact same symptoms now, only worse. He also has diarrhea now. He had another HIDA scan last week, along with an U/S, bloodwork, and stool cultures.Everything came back normal and we were told that his ejection fraction is now 84% and that it is within normal limits. How can that possibly be? We have a follow-up appt with the gastro dr next week but we are at the end of our rope. Is it possible to go from a low ejection rate to a high ejection rate? How can this be normal? "
Ill contact a few surgeons and see what they say. Ive attached a picture indicating the location of the pain in my back. I figure based on the location its my gallbladder. It really hurts touching under my right rib, and when it gets really bad, I feel like my chest will explode. What do you think?
john23620
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tommyboy77 john23620
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That's about where my pain was, along with the pain under the ribcage on my right side as well. When I was admitted last April, the ER Doctor pressed on my RUQ, and I almost jumped off the table.
If you can, look into a second opinion. That's what I did. And surprisingly, a bad gallbladder most times, when there are no stones, isn't a cut and dry diagnosis. All of my tests (except the HIDA) came back normal. And the surgeon who removed my gallbladder said that a lot of times, the gallbladder is in fact bad, but the tests are normal. My ultrasound was negative, but had 10+ small stones in it. There would be times I wouldn't even eat and I would have the pain because it was constantly working.
But be persistent. You are the best judge of your own body and knowing when something isn't right. Find a doctor/surgeon who will listen to you and not just rely on test results.
john23620 tommyboy77
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Yeah, I feel like that too -- I dont want anyone touching my RUQ. I still feel it could be pancreatitis or something else, but my bet is the gallbladder.
I did some more research and found that "Gangrenous cholecystitis (GC) is difficult to diagnose preoperatively in the patient with suspected acute cholecystitis.", which is very scary. Also, " We present an unusual case of gangrenous cholecystitis which was totally asymptomatic, with normal pre-operative parameters, and was discovered incidentally during a laparoscopic cholecystectomy."
http://www.ncbi.nlm.nih.gov/pubmed/26496106
https://jmedicalcasereports.biomedcentral.com/articles/10.1186/1752-1947-5-199
Im going to send off some emails/make some calls to some surgeons this week, but I dont suppose you could private message me your surgeons details so I can consult him/her?