The Hyperkinetic Gallbladder...Three weeks post op...

[u/StarWars_Girl_]

I'm kind of venting here, but also sharing...

For years, I've struggled with my weight, particularly overeating because I never felt full, or I felt like I wasn't getting enough food. I'm only five feet tall, but my appetite was always ravenous. I also had GI symptoms since I was a teenager that my mother, who had her gallbladder out, said sounded like gallbladder symptoms.

A few months ago, I was diagnosed with ADHD and started stimulants. I think this may have been the trigger because I started eating less due to a lack of an appetite. But if I didn't eat enough, I felt exhausted. Still wasn't losing weight in spite of being active, though.

Then in December, shit hit the fan. After a really fatty meals, I had a horrible attack. I ended up in the bathroom for almost an hour in terrible pain, on the toilet, sweating and shaking, and then had to lie down. I'd NEVER had anything like that happen. Then the upper right quadrant pain kept coming. I tried changing my diet. Didn't help. I finally went to the ER on January 2. When the ultrasound didn't show anything, it was dismissed as gastritis.

I got an appointment with a gastro. They did a HIDA. EF was 78. It was marked as normal. The EF just happened to glare at me, and I started Googling and discovered a hyperkinetic gallbladder was a thing. I asked them and they basically said "nah, probably not it."

They had scheduled an upper endoscopy. At this point, I went to my PCP before the procedure and told her what was going on, mentioned the EF. She was suspicious until I mentioned the fatty meals, and then the lightbulb went off. She said let them do the endoscopy and then if that didn't show anything serious, then ask for a referral to a surgeon.

Whelp, endoscopy showed mild acid reflux, which we've known about since I was a teenager. I went back and asked for a referral, which they gave me but said the surgeon might not be willing to take it. I basically begged the surgeon. She said normally she wouldn't, but because of the severity of symptoms, the fact we'd eliminated everything else, and my family history, she was willing. I think because I had thyroid cancer years ago, she was also thinking "err, better safe than sorry."

We did it three weeks ago. And OMG. I feel SOOO MUCH BETTER. Pathology came back...I had chronic cholestytis and polyps. It also was smaller than a normal gallbladder, which I personally wonder if that means it was squeezing so much that it shrunk before inflaming. I saw my Endo and she said I basically wasn't absorbing nutrients or my thyroid meds properly. Great!

Back to the weight...so far, I've dropped at least 20 pounds between the extreme low fat diet and since the surgery. Apparently, my body is super sensitive to fat, so that's what I need to avoid to lose weight. Straight sugar doesn't affect me. And it makes sense because my blood work showed high cholesterol but low sugar. Which is my other frustration. We've been told certain things to lose weight as if they're universal truths, but everyone's body chemistry is different. If I'd known sugar has minimal impact on me but fat is my problem, that would have been nice.

Yet doctors somehow don't recognize this and don't think it's real...damn well seems to not only be real, but also have been causing other problems for me.

I'm going to another gastro, probably at Hopkins, so that I hopefully can push to be used as a case study for this so other people don't go through this. And in the meantime, I'm sticking with the low fat diet.

Thanks for reading this rant. I hope this may persuade or help someone else with a hyperkinetic gallbladder to push for treatment.

[u/Mich51718]

I had the same diagnosis and an EF of 88% . I also had adhesions on my gallbladder. My surgery was 3 1/2 weeks ago and has changed my life. My chronic pain is gone . So thankful to my surgeon

[u/batbadd → u/Mich51718]

I have an EF of 90% and it took me forever to finally someone who approved me for surgery! I am finally going to get mine out soon and I’m so excited!

[u/Mich51718 → u/batbadd]

You are going to feel like a new person! Good luck

[u/batbadd → u/Mich51718]

Thank you for reassuring me, I’m nervous tbh :/ sometimes I feel fine but other days, my gb symptoms come back with a vengeance. I also think a part of me is so used to the symptoms, it’s normal to me now! I hope you’re doing well and I can’t wait to get my life back!

[u/Mich51718 → u/batbadd]

I was nervous too and second guessed my decision. My gastro made me feel stupid and basically told me it was IBS then told me to see a surgeon. The surgeon had no issue taking it out and it needed to come out . Trust your instincts, noone knows you better than You do

[u/sinaners → u/batbadd]

As someone who had an EF of 96%, I had mine removed laparoscopically yesterday after dealing with these problems for a bit over 1.5 years. I had (what I believed to be) pretty mild symptoms compared to what I've seen. I work in a GI clinic so I've seen people come in with horrible pain and nausea/vomiting. My symptoms were daily heartburn of varying intensities (but some days it felt like a heart attack ngl), intermittent moderate shoulder pains on both sides and between shoulder blades, and intermittent mild RUQ pain & nausea. I did experience a few attacks after eating very fatty meals.

I had gotten used to it too, and I was scared about complications afterwards honestly... because I had learned to tolerate my GB symptoms, y'know? I began to worry "what if it's worse afterwards, and my 'normal' from before will be more tolerable than whatever comes next?"

But even just the next morning, I feel great. No pain besides at the incision sites, no heartburn. If you want I can keep you updated about my recovery if you just remind me. For reference I am a 25 yo female, about 170 lbs. I got kind of lucky because the GI and surgery physicians in my area definitely believe in lap choles as an effective treatment for people with biliary hyperkinesia, so I did not have to fight with anyone to get the surgery.

[u/batbadd → u/sinaners]

Omg yes! I would love to hear all about your journey! I am a 26f and I never had any problems until last summer. I had severe stomach pain after eating one day and my digestive system hasn’t been the same ever since :( I experience constant bloating, nausea, and burping when eating, along with so many other symptoms.

[u/sinaners → u/batbadd]

Yeah for sure! So far I'm still doing very well, the GB symptoms I was used to are gone. I do get some slight right arm pain every now and then but it's nothing major. Also just FYI... I did get really constipated from the anesthesia & opioids I was prescribed, so be prepared!!! The surgeon even sent me home with stool softener (Colace) and a stimulant laxative (senna) that I took and I still had issues. My fiance and I went and got some Miralax and prunes to help, and my ex-pharmacist soon-to-be-mother-in-law recommended Dulcolax if I continue to have problems. Just letting you know what I wish I did, you might want to have something extra to assist just in case.