Please some help here....massive GB pain but I have NO gallbladder! UPDATE #9

[mykdsmomy]

I have been one huge mess lately and this week has been the crescendo! I have been sick all week with pain in my upper right quadrant plus some lower back pain. I have been having more diarrhea lately than usual (sorry for the TMI). I have IBS (although it is probably Crohn's) so I'm used to it but it's gotten worse. Anytime I have anything to eat or drink (even water), I wind up with pain (both cramping in my tummy and upper right quadrant pain (near my liver).

I had my GB out a few years ago. A year after, I was still having attacks and wound up with severe diarrhea for a few days...I went to the Dr. and my liver enzymes were through the roof. They said I probably had a residual stone in my bile duct that had passed (causing the pain and elevated enzymes).

I also have fatty liver (and slightly enlarged liver). The surgeon who did my GB surgery told me I didn't have to change my diet, etc. He said I would be fine. He lied!

I've read the Liver Diet and some other sites but I guess I never believed I really needed to follow a strict regimen because there is very known about post GB issues.

I went to the Dr. yesterday and she ran a ton of tests including a stool sample (fun times!). I am somewhat concerned that it's pancreatitis. She thinks it's probably viral because she's seeing a lot of tummy bugs this week. I really don't think this is viral. I pretty much know it's my liver causing me pain. I also have been having a bit of a V8 moment, if you will. I realized that if my body is prone to gallstones, then why would my body stop making gallstones just because I don't have a gallbladder when gallstones originate in the liver.

Anyway..I'm babbling...but I was hoping to get some input here. Has this happened to anyone here? Any suggestions?

(ps...I've also had headaches all week after I eat...which I never get)

Thanks

[LittleBattleAxe]

It sounds to me like pancreatitis but of course the tests will rule that out or not. So sorry! I also had my gb out and had pancreatitis that landed me in the hospital for close to two weeks. Dealing with the back pain was hard. I do hope you get some answers soon and find out just what you are dealing with!

[mykdsmomy]

Thank you I'm not any better today and in fact it almost feels like it's gotten worse after I eat or drink anything.

This morning I had one dry pancake with a few sips of my coffee (yes I know, but I'm giving up everything else). I had a Fiber One bar this afternoon and within 20 minutes or so of eating it, my stomach was hurting. It's that pain right below your sternum that feels like you can't breathe. It was like this when I had a gallbladder and I would get an attack.

I had a few saltine crackers today and the same thing happened as well. Now I'm sipping water and my stomach is cramping. I am so sick of this The thing is, I'm STARVING (which I'm grateful that I'm hungry and not nauseaus!). I'd love to eat a meal but I don't want to deal with the pain. I think I'll take some ACV and see if that helps at all. I took a Pepcid AC this morning (out of desperation) I don't know if it helped because it was during a time when I wasn't eating and my stomach tends to stop hurting a few hours after I eat....so I don't know

Anyway...thanks again...and hopefully I'll get some answers tomorrow

[mum4vr]

Sorry, I'm no help, but anyway.

THANK YOU for posting this bc I am to have my GB out soon, and I wondered about what happens to bile salt after there is no more GB, kwim?

At this point food is the enemy, and I love food alot. A LOT. Been changing diet and ok for 9 years, but now everything sets off an attack.

I'll keep checking-- let us know how you're doing.

blessings

[Liquesce]

Liver stones are very uncommon. Bile originates in the liver; stones typically do not. The function of the gallbladder is to concentrate and store bile ... it's the concentrated bile salts which carry a serious risk of forming stones. That's not to say that liver stones never happen, but it is to say that usually when a person experiences pain in the liver area stones are not going to be found to be the cause.

Unfortunately disorders of the entire biliary system can often share both risk factors and symptoms, so a gallstone and/or gallbladder disease diagnosis isn't necessarily the full story. Often it is. When it's not though, obviously, it can be maddening to go through surgery only to find out the symptoms didn't all go away. I hope the tests tell you what you need to know. Off the top of my head, sphincter of oddi dysfunction and bile reflux can cause some very gallbladder-like symptoms.

So can regular old acid reflux, which is my own personal anecdote. I had my gallbladder out last January. A couple of months ago I went on a medication which caused vicious heartburn, but at first I really very nearly panicked because it felt exactly like how a very bad gallbladder attack would begin in me. Regular antacids didn't touch it, but a daily dose medication (I think Prevacid?) really helped so much.

[A&A]

Originally Posted by Liquesce

I hope the tests tell you what you need to know. Off the top of my head, sphincter of oddi dysfunction and bile reflux can cause some very gallbladder-like symptoms.

There is actually a procedure where they can go in and enlarge your sphincter of oddi.

In the meantime, I would suggest taking a good-quality Vit. E. I buy the Carlson's brand.

[A&A]

Originally Posted by mum4vr

Sorry, I'm no help, but anyway.

THANK YOU for posting this bc I am to have my GB out soon, and I wondered about what happens to bile salt after there is no more GB, kwim?

At this point food is the enemy, and I love food alot. A LOT. Been changing diet and ok for 9 years, but now everything sets off an attack.

I'll keep checking-- let us know how you're doing.

blessings

OT, but do you have gallstones? If not, the surgery to remove your GB may not take away your pain.

[mykdsmomy]

Originally Posted by Liquesce

Liver stones are very uncommon. Bile originates in the liver; stones typically do not. The function of the gallbladder is to concentrate and store bile ... it's the concentrated bile salts which carry a serious risk of forming stones. That's not to say that liver stones never happen, but it is to say that usually when a person experiences pain in the liver area stones are not going to be found to be the cause.

Unfortunately disorders of the entire biliary system can often share both risk factors and symptoms, so a gallstone and/or gallbladder disease diagnosis isn't necessarily the full story. Often it is. When it's not though, obviously, it can be maddening to go through surgery only to find out the symptoms didn't all go away. I hope the tests tell you what you need to know. Off the top of my head, sphincter of oddi dysfunction and bile reflux can cause some very gallbladder-like symptoms.

So can regular old acid reflux, which is my own personal anecdote. I had my gallbladder out last January. A couple of months ago I went on a medication which caused vicious heartburn, but at first I really very nearly panicked because it felt exactly like how a very bad gallbladder attack would begin in me. Regular antacids didn't touch it, but a daily dose medication (I think Prevacid?) really helped so much.

Thank you for the help Have you read The Liver Diet by Sandra Cabot? I think it was from her website that I read gallstones originate in the liver? I also have read that "liver cleanses" can produce mass amounts of stones that have been clogging up the works in the liver BUT....I'm still gathering info so I'd love to read your sources of info on gallstones. (I hope that comes across as I intended it. I don't mean to argue at all...I'm just trying to sort through all of this info I've read
It's so frustrating because all of the mainstream sites I've read say that there is only a tiny percentage of people who have problems post gallbladder removal and yet, I've found TONS of message forums filled with people like me who have had nothing but pain and problems since having their GB removed
My GB was removed because it was filled with stones AND diseased (the surgeon's words). He said it had probably stopped functioning years ago.

Originally Posted by A&A

There is actually a procedure where they can go in and enlarge your sphincter of oddi.

In the meantime, I would suggest taking a good-quality Vit. E. I buy the Carlson's brand.

Thanks I saw a GI dr. a few years ago that had mentioned sphinctor of Oddi dysfunction but said the ERCP was risky and could cause further issues. I was supposed to get scoped and a colonoscopy but I didn't go back I have been avoiding getting a colonoscopy for years because I figured it was just IBS...now I"m starting to wonder if I have Crohn's (what they wanted to check for) because it (from what I've read) can cause gallstones.

Originally Posted by mum4vr

Sorry, I'm no help, but anyway.

THANK YOU for posting this bc I am to have my GB out soon, and I wondered about what happens to bile salt after there is no more GB, kwim?

At this point food is the enemy, and I love food alot. A LOT. Been changing diet and ok for 9 years, but now everything sets off an attack.

I'll keep checking-- let us know how you're doing.

blessings

Oh I'm so sorry I don't have any answers for you either but I can definitely commiserate with you! Have you tried citric acid or apple cider vinegar? The ACV I took last night before I ate some toast totally helped!

[mykdsmomy]

Just wanted to update everyone on the goings on so far: I went to the ER on Tues night due to the pain in my upper right quadrant (it radiated into my back).
They did an u/s and more bloodwork. Nothing popped out at them and the ER dr. said it sounded more like Crohn's. (Although I'm looking at the records right now and the U/S does point out my fatty liver and a slightly enlarged spleen)

Went and saw the GI specialist yesterday and told him my fear of the colonoscopy/endoscopy. He prescribed me a few meds to try first (anti spasmodic, an acid uptake inhibitor, and a GI cocktail (Maalox with lidocaine). He's also ordered an h pylori bacteria test and another culture. He said it may just be a severe case of IBS but it could be Crohn's and there is no way to know for sure until we do a colonoscopy

I go back in two weeks and then we will talk about scheduling the scopes....for now I'm feeling slightly better. I'm able to eat a little bit and it's shaken me into a MUCH healthier attitude towards food!

[babygirlie]

I also had my gall bladder taken out and the pain I had did not subside. I did have many stones.

I hope you are eating gluten free. I went through years of pain and eating gluten free has helped tremendously with my IBS symptoms. You must be COMPLETELY gluten free though. GI offered a biopsy.. but you could also just DO the diet for 8 weeks and see if it helps (takes 6 weeks to get all the gluten contamination out). The GI said he wouldn't wish a GF diet on anyone. Well I much rather do a free diet than a horrendous biopsy. I've had biopsies before and they were NOT fun and am done with them for now.

Now after my pre-e where my liver was enlarged and dr said it was about to rupture... well 16 months later I still have the right lower rib pain and it scares me but my liver tests came back normal (they were high). New dr said it's a muscle strain which I severely doubt but no idea what else to do about it.

Life is much better gluten free.

[onegirloneboy]

If you do end up going having endoscope and colonoscopy they are really not that bad!!! I had it done last week and was terrified going in but it was no big deal. Glad I had it done.
HOpe you are feeling better soon!

[Llyra]

Another vote for the scopes being not that bad. I have one every few years to keep an eye on my ulcerative colitis. I was horrified before my first one, but it really was no big deal. I was sedated during, and I never even knew what was happening until I came out of the sedative. The worst part is the prep beforehand. But honestly-- the colonoscopy prep is not nearly as bad as the symptoms of my disease were. And knowing for sure what the problem is can be very reassuring, and can help you steer clear of the life-threatening complications you can get with Crohn's.

And I would totally recommend working on your relationship with food, and finding a diet that's truly healthy for your body. People with chronic digestive issues (like me!) often have really dysfunctional relationships with food, and it holds us back from healing.

[mykdsmomy]

Thank you both for the encouragement about the scopes. I am TERRIFIED of doing these and yet I know I need to

I tried the Levsin yesterday and it did nothing. I wound up in the bathroom anyway

I think another part of me is scared that they will go in and find nothing and not have an explanation except for IBS and Fibro. Not that I WANT Crohns or UC but it would explain the severity of my symptoms for the past 20 years

I'm going to wait for the results to come back from the H. Pylori and the WBC stool culture. I'm also going to call the Rheumatologist this week and finally make the appt I've been putting off.

I'll keep you posted