Lets talk Gallbladder

[kosy2]

Do you still have yours? Is it causing you any problems? If it was removed, how long ago, why, before or after PBC dx?

[Hidden]

The first thing I was checked for was gallstones. When that was negative they kept testing, thus the PBC diagnosis after a positive AMA and elevated LF numbers.

I wish you good luck!

[Tumbleweed41]

I was dx with AIH/PBC 4 1/2 years ago and I still have mine, tho' there have been several times when the Drs. tried to blame it for one problem or another. So far has not proven to be the "bad guy". -

[Alley27 in reply to Tumbleweed41]

Hi, I have AIH and PBC was diagnosed recently, but also when the hospital were doing the relative MRi etc they found I had multiple gall stones. I have opted to have my gall bladder removed because I have problems eating; no appetite and pain afterwards. I am now just waiting for an appointment wit the surgion.

My consultant told me that with these conditions her policy is to give you the option of gall bladder removal, you could check if this is possible at the hospital you are with.

x conniefused.

[Doxiegal]

I did have trouble with my GB. It was removed 6 years ago....I had a recurrence of the same type of pain..and diagnosed with Sphincter of Oddi dysfunction(SOD)...had ERCP with sphincterotomy which helped for 3-4 months. Sometimes, I wish I had my GB back!

[skywalker in reply to Doxiegal]

Hi Doxiegal

May I ask why you wish you had your GB back? Is it causing you problems not having it? I'm about to have mine removed in a few wks! I have AMA but my LFT'S are OK. I itch like mad these days, I've had a few nasty episodes with my GB and was hospitalized for a week.... I'm wondering whether or not I should leave it!

[kosy2 in reply to skywalker]

Have you had HIDA scan? This is a test to see how your GB is working.

Can you describe your nasty episodes? I have been in the hospital 3 time in last 16 months. Some doctors want to remove GB others say HIDA scan is normal and I have NO gallstones so for now I still have my GB.

I asked this question because I wanted to see what my PBC friends had experienced and if the doctors were just grabbing at anything. Let's face it, they really do not know what they are doing when it comes to PBCers.

[skywalker in reply to kosy2]

Hi Kosy2

My nasty episodes were grumbling Cholysistitis which was very painful, I don't have stones. What happened was by the time my appointment came it had settled down, Then would cause me pain again and keep settling down. Because they couldn't find stones they said I was worrying too much. Because I have a positive AMA and itch, but my LFTs are ok, they have said I don't have PBC. but when you have pain, it's very difficult not to believe you have!!!

Anyway things settled down for a year, then two weeks after having a hysterectomy, I got severe GB pain which I couldn't cope with, and was diagnosed with cholysistitis. That was in January, I'm having mt GB out on the 13th June! Because it could kick off at any time, and it's agony! As for my itching and being "predisposed" to pbc, I don't know what to make of it.... I have lfts annually so I will see! I know quite a lot of pbcers have had problems with their GB X

[kosy2 in reply to skywalker]

If you do not have stones why do they think it is your GB that is causing you pain?

[Mccracm in reply to skywalker]

So this is something I was wondering....I just learned about PBC and I'm worried because I have a lot of the early signs, ESPECIALLY the pruritus. I was wondering if it's possible to have PBC without having elevated LFTs? I haven't had my AMA checked yet.

[Jtxx]

I'm the same as LoveMy Liver. I was checked for gallstones due to the elevated LFT's but all fine and then diagnosed with AIH/PBC overlap although I am AMA negative. Still have my GB. x

[skywalker]

Hi Kosy2 and Jtxx

I has an ultra sound scan and my GB was inflamed! I went to A&E in agony, had to wait a bloody long time but they eventually got round to doing a scan. It showed a thickening of the lining of my GB and concluded Cholysistitis. It had been causing me problems in the past....but no stones is a problem for them to diagnose. It could be sludge/Grit or they reckon could even be the ama but couldn't be sure!

All I know it's diseased and so I will always have problems with it! That's why it's going on the 13th June.

But if some people reckon they would prefer it back (after removal) I'm curious as to why????

I know a lady who was dx with pbc because of elevated lfts and itching! She's just been informed that they were wrong, she doesn't actually have pbc!!! Makes you wonder doesn't it!!!!

[kosy2 in reply to skywalker]

I had an MRI of my GB as well. I showed wall thickening. However. the HIDA scan (special test for GB) showed the GB working just fine. Liver doc wanted to remove it saying "You can live without your gallbladder". My thought is ....I can live without my right arm, but why would I want to if I am not 150% sure it is causing me problems.

Then they ran the scope down to take a look at things and found a gastric ulcer.

Now I am thinking that my pain was from the ulcer. I guess time will tell.

All I am saying is get a second opion. Your pain could be from something else. When I had my liver biopsy done the doc said I had a lot of scar tissue from prior surgeries. Which could cause the extrem pain I was having.

[Tumbleweed41 in reply to skywalker]

Skywalker - know that you probably won''t see this right away but I'm praying that all went well today and that your recovery is quick.

Did you have the Laproscopy or the Open Inscision?

[skywalker in reply to Tumbleweed41]

Hiya Tumbleweed41

They cancelled my op the night before, due to bed shortages. I was very upset as you can imagine. I'm getting a lot of discomfort from referred pain that travels up into my neck, and on Sunday I couldn't bend over (to clean) lol.. The pain was bad but not bad enough to go to A&E or anything. It hurts when I burp even walking is uncomfortable. I'm waiting now to see if they fit me in for Wednesday, or the Wed after! My surgeon only operates on Weds apparently. Even breathing in deeply hurts around my shoulder and into my neck..and a couple of weeks ago it felt like a band round my shoulder being pulled tight. I'm quite run down with it all.

Thankyou so much for remembering honey, it's very nice of you! I will post on here after I eventually get it removed xxxx

[Tumbleweed41]

Friday I am going to have a HIDA scan done to see if the GB is causing my current problems. > Diarrhea after eating for the past 6wks now. Makes it difficult to leave home or eat out. Last week the "Internal Medicine" Dr. gave me Cholestyramine. He said that it will help the "bacteria" in the GB. Didn't say anything about the GB having a problem (?). Went to my PC on Monday whom I have been seeing for 3yrs now and she ordered the scan.(She's had me on Ranitidine for 3 months). We have already done the UltraSound, MRI and all that. As I have mentioned in other posts the GB has been blamed for a lot of things but never been proven. We shall see. - ga

[kosy2 in reply to Tumbleweed41]

Please keep me posted. Know what you mean about the diarrhea. I have had it for over a year now. Almost every day.

[Tumbleweed41 in reply to kosy2]

Had the scan yesterday and the tech seems to think that, from the pictures after making the GB "work", that this time the GB is "the bad guy". Should know for sure Monday.

[Christine69]

I have had the same pain for the last 6 years and was always told it was acid reflux. Pain became really bad and after a couple of trips to emergency they checked for gallstones. I didn't have any. The pain continued to get worse and they did a test to see if my GB was working properly. It wasn't. Had it removed and ended up back in emergency twice more after with the same pain. They admitted me to the hospital to see a gastro specialist as they couldn't explain the pain. He found that my common bile duct was blocked so had the muscle cut and a stent put in. He also ran more blood tests which is when I was diagnosed with PBC. So the question is...did I really need to have my GB removed? Haven't had any more pain since the bile duct was opened!

[kosy2 in reply to Christine69]

The way I see it NO!!!

Have you had to change the way you eat since your GB removal and/or what other things have you noticed since?

It really makes me angry when doctors just cut out body parts without extensive investagation as to the possable cause. My liver doc wants to remove my GB but I am not convinced that it is the cause of my pain.

Thanks for you reply.

[Tumbleweed41 in reply to kosy2]

Kosy - have you had the HidaScan?? It seems to be the "final say" on functionality of the GB.

[kosy2 in reply to Tumbleweed41]

Yes, two in fact. Both showed GB working fine. However liver doc said if he had removed my Lapband he would have taken the GB as well.

[Tumbleweed41 in reply to kosy2]

Just noticed this -

A Dr. can NOT remove any body part without your signature, so if your liver doc. has that type of attitude, I would seriously think about finding a new Dr.

[Tumbleweed41 in reply to Tumbleweed41]

P.S. Unless it was an emergency, of course. -

[kosy2 in reply to Tumbleweed41]

Yes, that's one of the reasons I said I am so DONE with doctors (except my PCP, I really like him).

In the 7 months since have the pain I have done extensive research and now suspect I may have MS. I have an appt. with PCP in 2 weeks to investagate.

Doctors are taught in medical school that - When you hear hooves think horses not zebras. That said when you don't find horses doesn't mean hooves are not there, just time to look for zebras. Some like my liver doctor don't seem to know or have forgotten this.

Since I have enter the world of autoimmune diseases (zebras) I find it so frustrating to any kind of straight answers for doctors.

Sorry for going on and on.

[skywalker in reply to Christine69]

was the blocked bile duct a direct result to your gb not working properly?

[Christine69]

I was on a non-fat diet before my GB was removed...not just a low fat but literally no fat at all. Since my GB was removed I have continued with a low fat diet but my gastro specialist has told me that I can eat normally now. I have eaten some more fatty foods once in a while and have not experienced any pain. I do have occasional diarrhea but that is more than likely from the Urso then from the GB removal as when I first went on it I had constant diarrhea. Now that has settled down but still get diarrhea occasionally.

[Tumbleweed41]

Hello ya'll

Well, got the final results today of the Hida Scan of my Gall Bladder. They rate the "problem" on a scale of 1% - 100 %. The tech. told me Friday that 30% and under was definitely GB; 31% - 80%, big maybe yes, maybe no (?); above 81% not the GB. Wel-l-l - my Gall Bladder is almost operating - 2.2%!! Wheeee! My Dr's. nurse is now going to get me scheduled for surgery. She is recommending the Dr. that took hers out, for 2 reasons > he's good - and he believes in keeping a surgery patient overnight - not same day surgery. Absolutely works for me. I know that surgeries have improved over the years but as far as I am concerned "major surgery" should not be "cut and go home". I had a masectomy 13y ago and it was "same day". I told the Dr. to figure out an excuse that would satisfy the insurance co. because I was staying overnight.

Ok - enough of the "rabbit trail". lol

The good Lord isn't going to know me when I get there - I won't be "going home" with all the parts that I started life with. - ga

[kosy2 in reply to Tumbleweed41]

Tumbleweed41,

So happy that you have an answer. So sorry that it involves a surgery. Please know you will be in my prayers for a speedy recoverery.

Will you have family/friends to help arounds the house when you get home? Please get plenty of rest and don't over do to soon. I don't know about you but I seem to take longer to recover from surgery than most. Please keep us updated.

BIG BIG Hugs

[Tumbleweed41 in reply to kosy2]

Kosy2 -

Thank you for your concern, young'n. -

Saw the surgeon today - says we'll do the surgery "sometime next month. I'm going on vacation for 2 wks." !!! Needless to say I am not too impressed. However, he did say that he would do the "lapo- something or other" LOL first and if he was not pleased with it or tho't that there might be more to do, he would do the regular incision as well - all during the same surgery. The lesser procedure is 1-2 days in the hospital & 1-2 wks for recovery; the other is 3-4 days in the hospital and 3-4 weeks for recovery.

My husband is an excellent help,(he brings me coffee in bed in the mornings - ) but we have good friends close by so I know that I probably won't want for anything. I usually heal (bounce back) pretty fast, but it's been 13years since I had a major surgery and "I'm not as young as I used to be" - but God is good. I must admit that I am a bit miffed at having to wait. - ga

[kosy2 in reply to Tumbleweed41]

Tumbleweed41

Have you had a liver biopsy? Just thinking that maybe they could do biopsy same time as GB removal. A two for one.

Having to wait it hard on the nerves, however God's timing is perfect. Also you will have time to prepare for surgery. Maybe extra vit. to boost healing.

Keep us posted

[Tumbleweed41 in reply to kosy2]

kosy2

There are times when I am not a very patient person. I like to get my fingers in the mix and stir it up sometimes. lol Yes, I know God's timing is perfect, but this child sure isn't. lol

I have given it some thought about doing my "5yr" biopsy at the same time but I don't know if this particular surgeon can do it. Was also thinking that maybe I should request that he go ahead with the "incision" type surgery being the GB is in the location that it is and I have the problem with the Liver/Bile duct, which are on each side of it. It's terrible to be "thinking on my feet". lol

I just put a call in to my Gastro/Hep. to find out if he had received a copy of the Scan. He may just change everything.- Also put a call in to my PC to get her opinion about waiting so long with that low of a %. Didn't I say that I am not very patient? LOL. I should probably erase all this but this way you get an insight to what happens when you pray for patience. LOL

[kosy2 in reply to Tumbleweed41]

Laposcopy surgery has much faster recovery time and far less painful. With PBC the bile ducts that are being destroyed are inside the liver so I not sure how they would "get in the way" of GB removal.

As always it's best if you can get a second opinion.

I struggle with patience as well. I feel as though I have much less since PBC dx.

I am glad you didn't erase - I so enjoy what you have to say.

BIG Hugs

[Tumbleweed41 in reply to kosy2]

Guess I don't know as much about PBC as I tho't. - Thanks for the input.

Surgeon's nurse called yesterday - surgery is scheduled for 21 June. He gets back from vacation on the 13th so I hope to get to talk with him before then about doing the biop. and inscision. Time will tell. "Lord, help me wait". (NEVER pray for patience. lol)

[skywalker in reply to Tumbleweed41]

Did they say you would have key hole? The gallbladder is a tricky organ so my pre-op nurse told me.

They said surgeon will try key hole first, but if they can't "pluck" it through the small inscision they do open surgery!

Ohhh the joys of it all xx

[Tumbleweed41 in reply to skywalker]

That is pretty much what the surgeon himself told me at our "pre-surgery consultation" before he went on vacation. lol He said that if " I see something that I don't like I then do the open incison". The open surgery also means twice the hospital time and twice the recovery time. Do you have a surgery date yet??

[cowren]

Hi all my gb specialist didn't want have mine removed because of pbc !

I had endoscopy scans bloods and was waiting 4months for follow up appointment when my gb had other ideas I was admitted on Mon and they said they wouldn't do anything until they spoken to my consultant. By Tue night I had collapsed and guess what ! They whipped it out on wed am before I had a chance to wake up turns out the whole gall bladder had gone gone solid and if I had waited any longer I wouldn't be here now !!

I had key hole surgery and it was fine I am still eating low fat diet as to scared to risk anything else . I am so glad it was removed and have had no side effect .

Wish you luck XX

[Tumbleweed41]

So glad that everything went well for you and you are doing better. Drs. just don't know what to do with us, do they! lol

[RobertaLynn]

I had severe gallbladder attacks for about a year. I got pregnant and they got worse. I ended up having a miscarriage (pretty sure related to the stress of the attacks and the meds I was on) and had emergency surgery to get my gallbladder out soon after the miscarriage. That was in 2006. Current day (12/23/17), elevated liver enzymes a couple months ago, after many more blood tests, a liver ultrasound that showed nothing, I was referred to a gastroenterologist and he ordered more blood work and it "suggests" I have PBC. He ordered more blood work and a liver biopsy. Had that done on Monday and am now waiting for results. Trying my best to stay positive.