Tests Results are Negative to Remove Gallbladder

Posted by drlori76 @drlori76, Nov 17, 2022

Hi,

My test results just came in for the MRCP and HIDA and are negative to remove my gallbladder. Eight months ago they said there was sludge and an enlarged gallbladder, that seems to have gone away? I have significant daily abdominal pain, can’t eat without pain and gas. I don’t know where to turn for answers and feel this is not sustainable. Any thoughts about other diagnoses? My doctor doesn’t think it’s MALS

Thanks

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@drlori76 It is frustrating when modern imaging technologies fail to detect what the problem is. What were the findings on the scans? "Negative to remove my gallbladder" doesn't necessarily mean "normal".

My daughter and I had HIDA scans that showed "sluggish" gallbladders, but NO stones or sludge, thus questionable for removal. We both had surgery due to the symptoms, and the pathology findings were chronic severe inflammation. I was fortunate that my primary & the surgeon practice in the same clinic, and she told him to "trust Sue's instincts" so he did the surgery. I no longer have all the symptoms & pain.

What does the doctor suggest as the next step?
Sue

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@sueinmn

@drlori76 It is frustrating when modern imaging technologies fail to detect what the problem is. What were the findings on the scans? "Negative to remove my gallbladder" doesn't necessarily mean "normal".

My daughter and I had HIDA scans that showed "sluggish" gallbladders, but NO stones or sludge, thus questionable for removal. We both had surgery due to the symptoms, and the pathology findings were chronic severe inflammation. I was fortunate that my primary & the surgeon practice in the same clinic, and she told him to "trust Sue's instincts" so he did the surgery. I no longer have all the symptoms & pain.

What does the doctor suggest as the next step?
Sue

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I just heard from my GI tonight. She wants me to start low dose Imipramine, it’s supposed to help with GI issues. I guess I’m not going to have surgery. My concern is the pain which Tylenol doesn’t help with.

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Curious when you had the HIDA test done if you felt worse during it? I had the test done on the second day of going to the ER with right sided abdominal pain. I had felt pretty lousy for a few months leading up to this but felt so nauseous a little way into the test. The tester said he had enough info showing sludge in my gallbladder although no stones or blockage. I had my gallbladder removed that night. That was 9 years ago.
The downside of having my gallbladder removed is having to really watch my fat intake. That problem kicked in about 6 years post removal of gallbladder. If I overdo on fats I feel nauseous. Apparently my liver is not doing a great job on releasing bile at the right times so I suffer from bile reflux and take daily medication for that. I would exhaust all other possibilities, such as food intolerances causing the pain, bloating and gas. My GI tested me for Celiac, SIBO, CSID and took an enzyme assay during an endoscopy. We found some answers and changed up my diet drastically. While it is no fun to maintain, I definitely suffer way less from the problems you mentioned. Best of luck.

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@choosejoy

Curious when you had the HIDA test done if you felt worse during it? I had the test done on the second day of going to the ER with right sided abdominal pain. I had felt pretty lousy for a few months leading up to this but felt so nauseous a little way into the test. The tester said he had enough info showing sludge in my gallbladder although no stones or blockage. I had my gallbladder removed that night. That was 9 years ago.
The downside of having my gallbladder removed is having to really watch my fat intake. That problem kicked in about 6 years post removal of gallbladder. If I overdo on fats I feel nauseous. Apparently my liver is not doing a great job on releasing bile at the right times so I suffer from bile reflux and take daily medication for that. I would exhaust all other possibilities, such as food intolerances causing the pain, bloating and gas. My GI tested me for Celiac, SIBO, CSID and took an enzyme assay during an endoscopy. We found some answers and changed up my diet drastically. While it is no fun to maintain, I definitely suffer way less from the problems you mentioned. Best of luck.

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It sounds like you got a good work up. I have Kaiser Insurance and no one has tested me for other issues. I think I will ask why not?

They are treating me with medication but haven’t figured out what’s going on🥴

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I am lucky to have a GI Doc that is knowledgeable about available tests and supports using the dietitians in his office. He does understand how much of a role food intolerances and enzymes play in gut health. Some docs just run tests to rule out the big stuff like pancreatic cancer, etc and stop at that.
I have an RX for Levsin when my gut gets angry. But it has taken almost 30 years of having the broad diagnosis of IBS to get it figured out. I tend to do a lot of research myself and go to the doc with a list of questions. Hope they figure yours out. I’d definitely start with a food journal and eliminate some of the main irritants like caffeine, alcohol, dairy, sugar, gluten, etc. and see if that makes a difference in how you feel.

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@sueinmn

@drlori76 It is frustrating when modern imaging technologies fail to detect what the problem is. What were the findings on the scans? "Negative to remove my gallbladder" doesn't necessarily mean "normal".

My daughter and I had HIDA scans that showed "sluggish" gallbladders, but NO stones or sludge, thus questionable for removal. We both had surgery due to the symptoms, and the pathology findings were chronic severe inflammation. I was fortunate that my primary & the surgeon practice in the same clinic, and she told him to "trust Sue's instincts" so he did the surgery. I no longer have all the symptoms & pain.

What does the doctor suggest as the next step?
Sue

Jump to this post

@sueinmn I’m so glad that you and your daughter got the care needed. ❤️🙏🏻 I have a sludge as well and lot’s of symptoms I’m fact I’m severely ill now. My CA 19.9 is increasingly high and I have NET rectum history. I’m waiting on HIDA, barium swallow and SIBI on other center. I had been asking for further investigation for the longest… it has been very difficult to advocate for myself lately specially with all my symptoms (on my other discussions).

What should I’ll be looking forward to in this process? I have all the evidence but it’s really hard me to get a comprehensive plan of care.

Any feedback would be greatly appreciated 🙏🏻🌼

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Sorry you going through all that
The HIDA is a long procedure but not bad. They inject a dye in your veins. You wait about 45 minutes then do imaging for an hour.

Good luck

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My test came in low for remove my gallbladder , because of the pain I demanded to remove it. They said the problem could be that I have high iron in my liver. I had it remove red 5 days ago . My problem is a bad pain in my back

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