Losing Hope with a Gallbladder Issue

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Hi, all. I've never posted here before, but I'm running out of patience and I'm feeling a bit hopeless. To offer some background, I'm a 25 year old female with Lupus, Ehlers Danlos, Psoriatic Arthritis, and IBS (to name a few). I suffer from terrible GERD, and take a Prilosec once a day as needed for acid reflux that goes into my throat. About a month ago my aunt passed away and I lost track of my mind a little, and ended up taking 2 Prilosec in a day instead of one.

I ate a HUGE, fatty meal after this, and from 7:30pm to 3am I found myself in excruciating abdominal and back pain (to the point where I was crying), unable to sleep, uncomfortably full, with no acid to be seen to digest my meal. Eventually, I vomited four times, and ended up at the ER.

After a dose of Fentanyl, 2 doses of Ondansetron, and a dose of Ativan (for I am severely phobic of vomiting and my episode sent me into panic attacks) I was sent home. They performed an ultrasound and CT scan to check my gallbladder, and found no stones or sludge. He was still suspicious of a malfunctioning gallbladder however and referred me to a GI specialist (not until a month later). This was about a month and a week ago. Since then, I cannot eat without severe abdominal pain. I am constantly nauseous, though also hungry at the same time. I have not vomited again, probably because I am limiting food and water intake for fear of vomiting. I have lost 32 pounds. After seeing the GI specialist a few weeks ago, I discovered that, after having suffered a horrible upper respiratory infection in February, I was actually POSITIVE for Mono (I had been tested but never received my results) and was suffering from an enlarged spleen.

My GI doctor decided he wanted to perform an upper endoscopy (which ended up being canceled due to my enlarged lymph nodes in my neck from the mono) and a HIDA scan. My HIDA scan was performed last Thursday, and it took 85 minutes for my gallbladder to show up (when it normally takes 30-50). I found out today from my doctor my gallbladder is only functioning at 11% efficiency so now I have a referral with a surgeon on Monday to have it removed. But I am terrified that even after having it removed, I will continue to struggle with these symptoms. Due to my stomach being almost always empty now, I am suffering constant nauseous and atrocious acid reflux (and I am too nervous to take Prilosec again). I am always in pain, feeling dizzy, lightheaded, my lips and hands are cracked open from dehydration, the weight continues to fall off, I have a lump in my throat, as well as a buildup of mucus, and my abdominal pain is not only on the right side and in my back, but on the left side as well.

Is this normal?? Has anyone experienced anything like this? Do we really think removing my gallbladder could be the answer, or could there be more going on?

I've had chronic diarrhea for YEARS now, which I've read can happen with gallbladder issues -- could this have been my gallbladder all along?

The panic attacks due to my fear of vomiting has been equally exhausting, and I find I can barely sleep at night.

Just feeling really scared and hopeless today, even though I'm encouraged I'll be having surgery to remove it.

Thank you in advance for listening to me rant.

I hope each and every one of you feels better and never has to suffer through this!! It's AWFUL!

Sending love!

-Fallon

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9 Replies

  • Posted

    There are many in this forum who are feeling good after gb removal, majority are doing good. However it varies person to person. I also have Gastritis and non working gb intially and then gallstones, but I have severe acid reflux that reaches my throat and bloating and burping with any meals.so still on sidelines to remove gb.

    Did you do endoscopy to rule out gastritis,ulcer etc?

    Since you mentioned IBS does doctor prescribed colestipol or other bile agent to stop diarrhea?

    What kind of diet are you taking everyday?

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    • Posted

      Hi, biliarydyskines! Thanks for your reply. I was supposed to have an upper endoscopy done to rule out such things as gastritis and ulcers but due to my lymph nodes in my neck being swollen from the mono, I couldn't have the procedure performed. So I'm unsure about those things right now. I, too, have severe acid reflux that goes into my throat with bloating, burping, severe voice loss, acid and bile in my throat as well as mucus, etc.

      And no I've never been prescribed anything for the diarrhea from my IBS (though while this episode has been occurring I'm having very few bowel movements at all. When I DO have bowel movements, my diarrhea is charcoal gray, with green liquid. It's very disconcerting. But I'll go 4-5 days at a time without passing a stool).

      As for my diet, I'm hardly eating anything at all. What bland foods my stomach can take. I have been avoiding fatty meals like the plague since this happened, but even the gentlest food - a couple Cheerios - makes my abdomen hurt. So I'm at a loss.

      Sorry to hear about your gastritis and gallstones! I hope they resolve it quickly for you.

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  • Posted

    Hi Fallon , Sorry I can't be any help to you but I just wanted to say

    that you are not alone feeling like this. I had my gallbladder removed

    almost 6 months ago and I can't eat anything at all without suffering

    terrible bloating and feeling really sick after the tiniest amount .

    I too suffer with anxiety and it's made it so much worse . I have pain in my belly button where the incisions were made along with the bloating and nausea.

    I hope you find what is causing ýour symptoms and hoping you feel better soon.

    It's a terrible thing to suffer from .

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    • Posted

      Hi, Linda, thanks for your kind words. I'm so so sorry you're also suffering through this as well. I really hope they can get you feeling better soon. It's miserable, and no way to live. Plus the anxiety makes it that much worse. Half the time I can't tell if my symptoms are from my illness or my anxiety. Keep on keeping on. I hope for a speedy recovery for you!!

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  • Posted

    If your this poorly take yourself to A and E? They have to do blood and urine tests and scans everything because once your there they have to investigate , they should not miss anything and tell them all about hour symptoms but how ill you are and they can see how poorly you are and say how dehydrated you are and cannot eat without being sick. Going to hospital is the right thing for you to do without waiting for doctors making you wait for further appointments. You should have a consultant there who can look into everything and you will be admitted and hopefully given saline drip to help rehydrate you. Good luck.
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    • Posted

      Thanks for your reply, Lee smile I've been to A&E (ER here in America) and they ran bloodwork and urine tests on me as well as an ultrasound and a CT scan and I guess they didn't find anything too significant because they just sent me on my way to the gastroenterologist. The GI doctor didn't seem too concerned either until we got the test results back from the HIDA scan, which we now know were very, very bad results, haha. So my referral with my surgeon is in a few days. I'm just hoping that whatever is going on with my gallbladder will fix the problem... I've heard it goes either way. Some find relief, some still struggle. I'm anxious.

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  • Posted

    Hi,

    I had my gallbladder removed a few weeks ago as my HIDA scan was 15%. It took me about 14 days to feel better. I’m now back at work and managing fine. My appetite has returned and I feel human again. I had left sided pain which was so awful but that has resolved too. Don’t be put off having surgery by what you read as everyone is different. Medicine isn’t black and white... It isn’t easy going through surgery but it’s a very straight forward op and I’m glad I went through it.

    Hope you feel better soon x

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  • Posted

    Hi there i can  relate  My symptoms are pain on my left side as well I have a hyperkinetic gallbladder that means it’s over working I seen a surgeon yesterday he said that the pain on the left can happen I’m having my gallbladder out on may 17th I have been going though this since December and have had all kinds of tests done I’m in  Constant pain and my back pain is getting worse i already have a bad back from having kids so it makes it worse 
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  • Posted

    Firstly, beautiful name. Fallon is my favorite name ever. 

    Now on topic lol I am also constantly in pain from upper right side wrapping round to my back under ribs, also stabbing pain left side. Dizzy and vertigo almost always. Tired and hungry but afraid to eat. Loose stools sometimes and other times can’t poop. NauseA. Just miserable. My HIDA was 97% so it’s overactive. I do find fruit and water are OK along with rice cakes and plain brown rice, about 1-3 small bites of chicken breast boiled. I hope you feel better soon 

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