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Do you still have yours!?


JaneEyre9

Gallbladder and Dysautonomia  

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I'm having pain in my right side and my back along with digestive problems (and yes i'm being seen by a doctor about it). After doing a search, I was amazed by how many people here have had gallbladder problems. How many of you are living well without a gallbladder? How many have dealt with mild side effects and not had surgery?

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i'm sure you've read my ramblings already if you've been reading the site, but my GB and i parted ways this past march. i couldn't tolerate more than about 1-2 grams of fat before it was taken out...and by not tolerate i mean nothing it wouldn't stay down. so it was beyond a pain issue. as far as GB pain goes, i had some butnot as bad as some from what i've heard.

my GB was functioning in the single digits. this type of dysfunction can be related to dysautonomia, dysmotilities, etc. i actually came across an article on this a few weeks ago but it's at home & i'm not, so i'll post it later...

have you had a hyda scan??

B) melissa

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I have had mine out, and it was one of the greatest things for me. I had severe attacks! The first time, I thought it was a heart attack, and I was going to die. Things alot better since it was removed.

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in july of this year had it taken out.

i was only throuhing up all the time but no pain .

now daira all the time anything i eat. still throughing up have lost 50 pounds the hard way.

way more dizzy ,dihdrted easy,stomic cramps.

gallblader was black inside with cis.

I fell worse then before.

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Thanks for all the replies and votes. It's taken me a while to come back and respond because my symptoms got worse. I'm now really nauseous after eating anything with fat in it.

-Dawg Tired, why/how does apple juice work to relieve symptoms?

-Sunfish..I had an ultrasound, but they told me it was "normal." Do you think the Hyda scan would add more info even after an ultrasound? I know there is something very wrong. They just haven't been able to find it yet!

-lizzy, sorry to hear that you don't feel better after the operation. that must be so frustrating!

Thanks again for voting. I've been doing a lot of reading about the gallbladder recently, and it's interesting to link that with your personal experiences.

Kristen

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Guest Finrussak

Left sided upper abdominal pain is often pancreas or spleen or even the splenic flexure of the colon .Center upper (epigastric) pain/pressure is often gall bladder and it can radiate up and toward left shoulder (referred pain is fun...ovarian stuff can be felt in left shoulder too) GB can also cause right sided pain where liver is. My GI guy says dysautonomias can result in sluggish GB emptying so bile is retained or even regurgitated into the common duct and even into the pancreatic duct. Hence the large numbers of GB and pancreatic problems. Plus retention of bile causes "sludge" a thick "old" collection of bile.

Also, epigastric stuff can be from stomach/ vagal plexus/esophageal sphincter spasms/and other GI stuff.

as for the tests IF theres a constant problem like stones or gravel or a very slow emptying they can be seen...but if its an intermittent problem the tests can often be negative. and that doesnt necessarily mean its ok...surgery can be a godsend, unnecessary, not resolve the sx, or even risky...every case is different.

Personally I have had a touchy GB for years...found a non symptomatic polyp they keep threatening to remove ( it doesnt bother me so Im against losing the GB) and a recent bad pancreatitis after years of what we know know was pancreatic irritation!!! As Ive never drank alcohol beyond the once a year glass of Passover wine, or have the other risk factors for pancreas stuff...theyre all guessing its sludge due to the dysauto. If it gets to be worse or frequent theyll have to schedule more tests.

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Hey Kristen!

Follow your gut and PUSH for an answer on the GB thing. Sorry, if that sounds forward. I had to fight soooooooooooo hard for sooooooooo long to get the darn thing figured out.

If you do a search for topics posted by me around September, Octoober, November and December of last year you will see my 'saga'....I have posted a lot on this topic and am pretty darned passionate about it.

Definitely get a HIDA scan with CCK--my ultrasound was also normal. If you are able to read old posts you might find my story helpful...I am not up to typing to much now and need to hit the hay. But if you want more help finding old posts or need more info. please let me know...Sorry to be so short here! I just wanted to at least chip in and let you know that you are probably right that something is going on. It's worth figuring out.

That being said...I got mine out 11 months ago and am still sooooo sick POTS wise and this year has been rough, rough, rough...so I wouldn't jump into surgery either. But, I still needed it out and my pain and all that is gone. I can also eat again whihc is quite nice!

So, just look for posts to the 'green girl' or dancinglight and hopefully some of that will help you navigate this! I know that without this board I wouldn't have pushed so hard to get an answer!

Keep us posted.

Emily

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Ever since I was diagnosed with CFIDS/NMH (1994), I have had digestive problems. We chalked it up to IBS and CFIDS symptoms. A polyp was seen on my gall bladder, but the docs didn't think it was progressing and didn't think the polyp was too blame.

A few years ago, I had GB attacks (worst feeling ever) and that's when my docs decided to take out my GB. Funny thing was, when they removed it, they saw no polyp. Go figure...

Right after my GB was removed, I couldnt eat anything without getting sick. It was ridiculous. A few months later I found out about "Questran" and started taking that almost every day and now it's 100% certain that if I take Questran before a meal, I won't get sick. Makes eating out at restaurants possible!!

Anyway, GB gone = digestive problems much better here. :)

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Thank you so much for the encouraging words. Emily, I read your ordeal in detail last night...what a nightmare! I'm so glad that you advocated for yourself and insisted on answers. I cannot believe the way you were treated by some doctors. In terms of gastro symptoms: Are you able to eat normally now? Can you eat fatty foods like french fries?

Right now I'm not eating much, and when i do, it cannot have fat in it. I have very little appetite, but at least i'm able to eat some fruit and drink some gatorade. I had some bloodwork done today and will see my dr. again tomorrow. I'm so frustrated that this is happening around Thanksgiving because i seriously love to eat!! Sometimes i get really scared that i won't be able to eat normally again. This all happened rather suddenly so i'm sort of still in shock.

Anyway, I really hope i don't have to have surgery. Does anyone know of non-surgery treatments for gallbladder? Do they work?

Thanks again for the support. I'm so grateful for it.

Kristen

PS- Rachel, do you have to take Questran before every meal? Is it an anti-nausea med? Can you eat normally now?

Edited by JaneEyre9
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Kristen,

I just saw your post now as I haven't been on at all today...I wanted to let you know I SAW your post and questions and will try to write tomorrow...

If you can get a HIDA scan with CCK that would be great...mayb eyour doc will agree to it given your symptoms? At least you would know whether you were on the right path or not! :)

The short answer is: yes, your symptosm are very similar to mine and I could hardly eat anything by the time I got it out. Now I can eat, eat, eat...I LOVE to eat too. And well, I could certainly benefit from slowing down. :P I don't eat french fries or super high fat food...and haven'ty tried since long before my GB surgery...my mom cooks everyting b/c I DO still have MAJOR food intolerances. Like no dairy even in my meds. So, the GB surgery was certainly not a 'magic cure', but as you saw from my story, I HAD to get it out and the surgeon clearly said that to me after surgery. Before surgery I couldn't eat most fruits, raw veggies, PB, red meat, etc. etc. Now I can eat as many fruits and veggies as I want, even raw. And PB. It's amazing b/c I am sicker in EVERY other way than I have ever been, but man, my stomach is MUCH better than ever!

Okay, I have more to say, but I have to go. I've got myself in a 'spell' right now...sorry. Did this help at all? Let me know if you have more questions and if your doc is open to a HIDA scan.

Lizzy mentioned that she still has diarrhea. I had diarrhea and vomiting after surgery, and diarrhea for several months. I have heard that some people never have formed stools again after GB surgery, but you can take a med for that. Maybe it's the Questran that Rachel mentioned. I waited it out and thank goodness for me it cleared up.

The HIDA scan is so simple, I was frustrated that the docg this iss were so resistant to it. B/c if you can rule that in or out, then you can go from there. You know? If you know it isn't your GB you can start looking at other things like food intolerances or other GI problems....but, compared to a colonoscopy and endoscopy and all the other tests out there, the HIDA is a bit easier to tolerate! Unless your GB is bad, well, I didn't feel so good after! It set my GB off for good.

Well, this got long...see, even when I am tired, I can't shut up about this topic!

Hope this helps and i hope so much that you find some answers soon...I KNOW on a DEEP level how frustrating this is!

Hugs, Emily

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I agree that the CCK HIDA scan is an easy test--for me, the CCK injection did set of spasms, but I was actually happy that the radiologist and my doctor got to actually watch an attack in progress. That test lead directly to the decision that I needed to get my gall bladder out asap.

Lots of the things can cause nausea, vomitting and abdominal pain. For me, I still get all sorts of pain from my GI system slowing down and causing my intestines to stay full instead of moving all the material along like it should.

Also, I had minimal problems after my gb was taken out, which included ocassional bouts of diahrea--my doctor said that it was normal since my body no longer could release the bile in stages and dumps all of it into your gut at one time. For some, that sets off some problems. Over time, my body adjusted to it. However, as a stop gap measure, I was on cholysteramine (sp?) powder for a while, which has nice side effect of helping to manage cholesterol--but also helped with the my gi spasms and runs.

Here's to a pain free future for you. I sure empathise. If you can't get your doctor to keep working with you to figure it out, maybe you might want to look for another doctor who is more interested in making progress with your health.

nina

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Well, i just got back from my doctor visit. She could see i was in much more distress this time than i was last week. When i told her about the pain in my back and right shoulder she said it sounded like classic gallbladder inflamation. She said it could be inflamed without me having stones, which we all know. When she brought up having a CT scan, i felt she was on the right track, but i didn't want to draw this out any longer, so i asked about the HIDA scan with CCK. She smiled and said that that would be a good test and she even had the receptionist call to set up an appointment for me as soon as possible. She was going to have me get a CT scan today, but decided to hold off till after the HIDA. I'm relieved because I'm pretty sure i would have been sick after taking the barium. It's hard for me to even drink large amounts of water right now, much less barium.

Anyway, that's where things are right now, and I am sure "giving thanks" that i have a doctor who is on top of this and that i didn't have barium for lunch!

Thank you Emily and Nina for your kind words, encouragement, and education. Without your help and posts, i would have been hesitant to suggest this HIDA scan to my doctor.

Kristen

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I had mine out last may. I was throwing up every night all night and had constant nausea along with pain in my stomach and upper back. Gall bladder emptying study showed mine functioning at 18%. Surgeon said it was "distended". Anyway, I still get nausea but not near as bad and I don't vomit anymore every night. I would do it again in a heartbeat. I still don't understand why dysautonomia causes gb problems.

bamagirl

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kristen -

i'm SO sorry that i've been MIA. and am super glad that Em, Nina, & others have been able to give you the info you needed. and am even more glad that your doc is staying on top of things & has you scheduled for testing. do you know when it is yet?

for me my ultrasound showed some sludge and thus helped move us in the direction of further testing but it was the HIDA than showed how not okay things really were. and the test itself, while not fun by any means, wasn't nearly as unpleasant as many others that are out there in my opinion (tilt, scopes of any sort, etc).

i'm so sorry that you've been having such a rough time GI-wise. my saga last year started in november and was also pretty quick in coming in terms of the major issues.

i really hope though that you get some answers soon and even more importantly some relief. you know where to find me if you need to vent, k?

hang in there,

:huh: melissa

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