Gallbladder Attacks

[beth27]

Im 27 and have NCS. No family history of gallbladder probs... but recently started having gallbladder attacks. Im thinking there could be a connection between that and dysautonomia. Is there alot of people here that have had gallbladder probs? And in there 20's like me? Did you end up having to take it out? Any info helps..thanks

[Dawg Tired]

I didn't have problems until my 30's. I had it taken out last year - I was 48.

[dezyrae2]

I had to have mine taken out when i was 20. Dont know if it had to do with pots though. good luck.

[spinalremains]

I think there might be a connection, but I certainly cant prove it. I had mine removed when I was 20. My doc says disautonomia causes lots of GI problems. I suggest you get the stupid thing out and be done with it.

[preacherswife]

I had mine out right before my 25th birthday, but I also was pregnant and had Hyperemesis Gravidarum when it went bad. That was the more likely reason I had to have it out.

[juliegee]

I also began having serious attacks in my late 20's- bad enough that I was hospitalized for weeks unable to eat. I also had no typical risk factors. I hadn't lost weight prior to the attacks. I was and am quite thin. The testing back then wasn't as accurate as now... so I suffered off and on until recently. I finally had it out this year at 45 years old. It was covered in many, many layers of adhesions indicating lots of prior inflammation, etc. I wish I'd done it years ago. It's probably no coincidence that so many of us with autonomic issues have GB problems at early ages.

Best of luck to you. Don't wait till you get incapacitated. The pain can be horribly debilitating and it can rupture. Be careful.

Julie

[preacherswife]

One more thing... GET IT OUT! Don't even bother trying to keep it.

[stellakitty]

I win for the youngest gallbladder removal... I had mine out when I was 12 (not a typo).

My gallbladder completely ceased to function (much like everything else in my body)... By the time it was removed I could eat only soup (no fat) and I was 5'5" and weighed 80 lbs. The surgeon told my parents that it was 3x the size it should've been, filled with sludge (old bile), and layered with fat (my body had been trying to hide it).... It obviously hadn't worked in YEARS (but I had had symptoms for 2 months when I had my appendix out). I have severe EDS and according to my doctors that's why I don't have a gallbladder.

[Dawg Tired]

I totally agree with the "don't try to keep it" mindset. It will cause more and more problems, and nausea/vomiting is enough of a problem without the added pukyness the bad gallbladder can cause.

[Radha]

i would really appreciate what kind of symptoms you had that related to your gallbladder being removed, did you have bad sharp pain on the right side or any other specific symptom like vomiting? i have alot of trouble eating with bloating and sometimes nauseausness, but no real sharp pain, and wanted to know if my gallbladder might be involved, i know none of you can tell me for sure, but just telling me what kind of symptoms you had would help, thanks

Radha

[juliegee]

i would really appreciate what kind of symptoms you had that related to your gallbladder being removed, did you have bad sharp pain on the right side or any other specific symptom like vomiting? i have alot of trouble eating with bloating and sometimes nauseausness, but no real sharp pain, and wanted to know if my gallbladder might be involved, i know none of you can tell me for sure, but just telling me what kind of symptoms you had would help, thanks

Radha

Unbeknownst to me, I've had symptoms for years and was hospitalized many times without every figuring out what it was. My symptom was excruciating pain/pressure in my upper abdomen that radiated to my back between my shoulder blades, NOT exclusively on my right side. It came on after I ate or sometimes just in the middle of the night. During one attack I was driving and was forced to pull over. I rolled out onto the concrete screaming. My poor son had to call 911. I'm talking about P-A-I-N!!! I was pumped full of morphine really quickly, thank goodness!

Lesser symptoms that I ignored were pain/pressure right where my bra strap hit, that was worse after eating, and nausea. A HIDA scan is a simple test that can pretty acurately let your doc know if your GB is working. Like many others, I had no stones (detected via ultrasound) so my doc was slow to suspect my GB. Some folks say the the hormone you are injected with during the HIDA scan causes severe symptoms. (It didn't for me or I'd been so used to them after 20 years that I didn't notice:-) The test showed that my GB was not working.

The symptoms you describe could indicate GB involvement that hasn't gotten to the acute stage yet. Don't let it get there. have a HIDA scan soon!

Julie

[beth27]

Thanks for the replys! I got the sonogram results back... no gallstones. They want me to take Zantac for 2 weeks to see if it helps. I know its not an acid problem. I think now my doc doesnt think its gallbladder, but I know it is..and that HIDA scan will probably show that its not functioning right... how do i convince my doc to want to give me that test... he might be thinking its a acid reflux or somthing which I know its not. And since I dont have gallstones... if i just avoid greasy foods... can the gallbladder start functioning better..or is this the start of continual probs??? Thanks!

[Guest tearose]

I was sick for many years and they never saw stones.

Finally, after an attack that gave me a high fever and a HIDA scan done soon after an attack, the GB showed delayed emptying.

The doc recommended removal and good thing...my GB was so grey and diseased it was adhered to my liver...messy surgery.

Anyway, I felt better after having it removed.

tearose

[juliegee]

According to my GI, once the GB starts to malfunction, it cannot reverse itself. It will not get better by itself. That being said, do a google search on foods unlikely to aggravate your GB. I had a few months after my HIDA scan where I kept thinking, I could reverse things. I ate a lot of beets, and other strange foods to try to keep it calm; to no avail. Do push for the HIDA scan. My docs took over 20 years to DX things for me. They are unlikely to suspect GB problems if you don't have stones, haven't recently lost weight, and are young.

Once it was clear it had to go, my surgeon was a lifesaver for me. He gave me a script for meperghan (sp?) It was a combination of morphine and phenergan. In case I had another horrible attack, I was instructed to take it and get to the hospital ASAP. It helped so much to have a plan in place while waiting for my surgery date.

Best of luck to you. I saw on TV recently that they are actually beginning to remove the GB through the patient's mouth. No scars! It is quite new and fairly unheard if now- just thought I'd mention it...

Julie

[DancingLight]

Definitely do a search for topics with the word 'Gallbladder' in them--you'll find a LOT of stuff. There are a lot of us without GBs that are in our 20's. And, Nina always says it right--the HIDA scan with CKK (CCK?) is the gold standard so that is the way to go. I don't agree with rushing into surgery though, as that was the worst experience of my life!

Hope you find some 'hits' and more information through a search...

Emily

[beth27]

What is the HIDA scan like? Is it scary? And what usually happened to you gallbladders, were they inflamed? Couldnt empty properly? Full of bile and sludge? Or all of these? Ur replys really help... do you think I should take Zantac 2 weeks.. I took one last night while it was hurting and it didn't do anything...

[pastordari]

I had obscure symptoms.

Thankfully, my doc at that time knew me well and took the sx seriously.

I was basically nauseous, bloated after eating, and frequent post-meal diarrhea.

That was it. My doc said it was not the typical GB presentation, but she had seen so many different presentations that she wanted to check it out.

Ultrasound first, no gall stones.

My symptoms continued so she ordered a HIDA scan to find out that my GB was not functioning at all.

I was around 35 when I had it removed.

My HIDA scan was no big deal.

Basically, you lie there while the machine watches your GB function (or not)

Then, after some allotted amount of time the tech injects you with the hormone that signals the GB to work and there is more lying there and watching.

I had no symptoms during the test other than a warm feeling all over when she injected the hormone.

No big deal.

Surgery wasn't much of a problem either.

I took a week off from work and that was it.

This surgery was one of the easier things I've done medically!!!

Good luck to you.

I would encourage the doc to get a HIDA scan if your sx continue.

Dari

[Dawg Tired]

Okay - my US and HIDA scan were both negative - but I still had the awful pressure when I ate. I was living on Coke and crackers. After the tests came back negative I took the Zantac (it is a rule-out - so take it!) and Doc sent me to a surgeon. He had me do an upper endoscopy. But he told me he was so sure it was the GB that he went ahead and scheduled me for both so I could do all of my pre-op at the same time. The upper end showed a very minor hiatal hernia - and they did the bx for H Pylori (neg) so I was a go-ahead for GB surgery on Dec 27th... with a cautionary "If the symptoms get BAD, come to ER and I will get it out immediately!"

Well... Dec 25th - 2 days prior to the surgery - STUPID me ate Christmas dinner.... Okay - I knew better. But it was calling my name!!

I was NEVER so miserable in my life! That's coming from a woman who went through 18 hours of back labor to give birth to a kid with a 13-inch head.

Yep - I was in a WORLD of hurt. But I told myself I was not going to go to ER on Christmas night! I stayed miserable all night, most of the naxt day (eating was totally out of the question) and bright and early the 27th I went to have it taken out. I told the surgeon and anesthesiologist they had ALMOST seen me Christmas night - they said I should have gone ahead and come it - they were both there!

But - it was really an easy surgery. One of those I should have done sooner.

Now, was that enough of a GB story??

[wareagle]

I had my gallbladder out a little over a year ago. I was 29 at the time and had never had problems with it before. My symptoms started with chronic diarrhea then came the gallbladder attacks. I didn't know what was going on the first time, it was the most awful pain I'd ever experienced, but b/c it wasn't limited to my right upper abdomen I didn't think it was my gallbladder initially. I had an ultra sound done that came back "normal"...then I had another attack with vomitting and knew it must be the gallbladder. I asked my GP to order the HIDA scan with CCK and she did so without hesitation...apparently the ultrasound ONLY rules out stones, you HAVE to do the HIDA to check gallbladder function (I'm sure your doctor will agree to the test). My test results came back with an Ejection fraction of 4%...no lie, no typo, it was functioning at 4%!!!

I was immediately seen by a surgeon who actually said that they only take them out if the patient is having symptoms...and since I was I had the surgery ASAP. Even if you choose not to have surgery it is important to have it checked out and monitored as complications can result from a "sick" gallbladder. I feel much better now. As to a connection to dysautonomia, I'm not really sure. I do know that there are a lot of folks with gulten intolerence and celiac sprue that also have POTS and this can lead to gallbladder issues. I think that's actually what triggered my problems was a high gulten diet.

I strongly suggest that you do a search on "gallbladder" as there have been LOTS of disscussions and great info. on all of this before. There are lengthly discussions regarding HIDA scans too.

Good luck and keep us posted!

[juliegee]

Hi Beth-

When my GB was finally removed, it was covered in layer upon layer of nasty adhesions attached to the liver- from years of chronic iflammation. The surgery would have been much easier had it been done sooner. A biopsy showed chronic cholesystitis. My surgeon never mentioned stones or sludge. I also had intermitent fevers and high liver function that went away after the surgery.

Get your HIDA scan!

Julie

[beth27]

thanks guys!!!

[Sunfish]

just an FYI re: the ejection fraction (the percent functioning shown by HIDA scan testing) as otherwise the numbers can be very misleading. anything above 30-35% is considered normal, so while a number such as 28% might sound really bad it's really just below normal as far as gallbladder functioning is concerned. i had my gallbladder removed several years ago and am glad that i did as it took care of one specific problem but it certainly did nothing for the rest of my GI issues; for me my gallbladder dysfunction was thought to be part & parcel of my systemic neuropathy, GI & otherwise. my HIDA scan results were 6%.

i have heard many stories good & bad re: gallbladder removal (it is often discussed on a gastroparesis list i belong to) but proceeding with a hyda scan is definitely a good first step. for me (and my docs) the decision to proceed with surgery would have been tougher if my numbers had been in the 20s but with a single digit result there wasn't a lot of discussion to be had.

there are some meds that you are required to stop for the hyda scan so make sure to ask about that if/when you are scheduled. the test wasn't pleasant for me but wouldn't make my top ten list of least favorite tests i've endured either.

melissa

p.s. i too would highly recommend a search as there have been a LOT of topics re: gallbladder testing/ removal over the years.

[beth27]

Just curious does anyone remember about how much the HIDA scans are? And the actually gallbladder surgery??

[wareagle]

Hey Beth..I pulled my insurance claims from my gallbaldder testing and surgery. I sent you a pm with the amounts. I urge you not to let the cost of medical care prevent you from getting help though! Remember, hospitals and doctors will work with you regarding payment plans and reduced charges. Good luck hon and keep us posted!

PS. At 4 % it looks like I won for the lowest ejection fraction!!! (Even though Melissa did give me a run with her 6%) Whoo Hoo...do I get a prize?

[willows]

I struggled for 2 years with pain so bad I couldnt eat , sleep or do anything but go yellow.

They left mine to long as NO family history , not over weight , slim, fit , healthy and just 30 ...........it exploded whilst I was taking to a locum consultant in the hospital............emergency operation = 24 gallstones ( cholesterol based ) + a foot of intestine removed as one had logged itself and made a right mess of me.

A complete nightmare , it took me about 4 months until I could do anything properly after this as in an effort to open me up and stop the bleeding etc , they broke my ribs and I have a huge scar of over 9 inches from between my breast to my navel . This wouldnt heal and kept coming open + infection and weeks and weeks on antibiotics , like something from a Stephen King book.

You get it out ASAP , once it starts you cannot really stop it even if you loose all the fat in your diet ............and thats just so hard to do as company's/manufacturers hide it , I for one wouldnt want to spend the rest of my life reading every single packet/box/carton side just so I could eat .

I do find that I cannot digest fat substances properly now and if I eat to much on the fat hidden inside somthing I have problems with my whole digestion system for a few days .

Good Luck beth , I tell you the pain I got from that was very bad and people however much they try have no idea until they have it just how much gallstones hurt .............give me child birth any day . Willows.