Gallbladder trouble without stones

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miscast
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 4/30/2009 8:52 AM (GMT -7)   
I'm new to this post, and looking for someone who has my condition. Biliary Dyskinesia - low gallbladder emptying with no stones. I have a 14% ejection rate (per HIDA), have always been thin, and an athlete. I'm now 103 pounds (lost 15 pounds during this journey). I've had to diagnose myself, as my GP wanted to send me home after clean blood work and ultra sound (fought my way to HIDA). I have no faith in Doctors at the moment - but like many women, I'm waiting for my prince / princess (knowledgeable doctor who will be a detective). The surgeon who performs the gallbladder 'deliveries' here, said that he never sees someone like me in his office. There's so much more behind my condition (but, again, self diagnosing!), and I'm afraid that going towards the knife may be a big mistake. Is anyone else out there?

pappardelle
Regular Member


Date Joined Apr 2009
Total Posts : 26
   Posted 4/30/2009 1:01 PM (GMT -7)   
Hi, I am a new member also. I cam sympathize with you and what you are going through. My story, for lack of a better term, is gall bladder pappardelle (my favorite pasta), maybe our situations are similar, maybe not. It sounds to me we both want our nightmares over. With me I just want a clear indication of what exactly is going on. For me, also, I am more afraid of not knowing than going under a knife. My advice to you is after taking what's been said by doctors, then listin to youself you have to do what think is right for you. You know your body better than any body on the planet. If you are telling youself no after listening to the experts then I would be hard pressed to advise you to go against what you are telling yourself. I hope this helps, and I wish the best.

miscast
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 4/30/2009 6:17 PM (GMT -7)   
Sounds like we have a similar tidal wave interrupting our lives. I'm not afraid of the knife, but I am sorely disappointed with the medical knowledge in my community. Boulder is full of healthy, active lifestyles. I've never had reason to depend on a medical opinion - but now that I need one, I'm finding that doctors here do not care to play detective. My problems started after being T-boned in a car accident. I had a mild closed head injury that has since wreaked havoc with my energy, hormones, vision, and sleep. My GP told me to tough it out for six months, and that everything would settle. The gallbladder problems started about four months after the accident. I have every reason to believe that the lack of motility is due to nerves not firing (I have inflamed facet joints), and / or hormonal upset (caused by pituitary or hypothalamus injury?). I've found an experienced naturopath, who is the only doctor who will look at the whole picture. All of my blood and saliva lab results will be in tomorrow. Biliary Dyskinesia seems to be a 'catch-all' for lack of motility throughout the biliary tree. There are many studies that show removing the gallbladder may decrease sphincter of oddi motility. Those who have no stones also have the highest percentage of continued pain after cholecystectomy. Is there a connection here? No organ in our body lives on it's own island. I'd like to have a clue as to who the players are before I let an organ drop out of the game. Are there any factors that you think may have triggered your problems?

Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 5/1/2009 9:16 AM (GMT -7)   
I had a chronically inflamed gall bladder. They can't diagnose that until they take it out; it only shows up on a HIDA scan when it's not functioning propertly.

If you think you have no faith in doctors, you haven't met me! LOL. I had that stupid bad gall bladder, with regular attacks, for FIVE YEARS and not one doctor really fingered my gall bladder until the very end. Oh, I had a couple of HIDA scans fairly early on, but the first was inconclusive and the second was clean (see, my gall bladder wasn't inflamed all the time, and when it wasn't, it functioned properly). I'd give them my symptoms, and they'd scratch their heads in bewilderment. I don't hurt on the right side exclusively, so it can't be my GB. And you hurt in your arm? You must have pulled a muscle. Dumb ***es. My mother's a nurse and she recognized the classic symptoms (helped by the fact that she also had a gall bladder taken out--seeing a genetic pattern here?). I took out one of her nursing books and looked it up, and hurting into the right arm is a classic sign of a bad gall bladder, and pain can indeed radiate into the back, anywhere in the upper abdomen, or down the right side; it's not always a sharp pain or lump under the rib cage.

So I was sort of brushed off as having IBS, nothing we can do for your excruiating pain and diarrhea, go home. So I stopped going to doctors and started trying to manage the best I could, while family members who had had bad gall bladders (more genetic evidence) gave me survival hints and sympathy.

It got worse and worse and worse until it finally swelled up and hurt under my right rib cage all the time. I went to another doctor, had another HIDA scan, it showed it was bad, and I went straight to a surgeon without even going back to the doctor. My stepfather performed the HIDA scan, so I got the results from him and made a beeline, with them in hand, straight to a surgeon and said "Take it out, take it out!" He took it out the next week and I've been better for it. Not normal; never normal. But better. I still have trouble with diarrhea, which I can usually control with medicine and some diet modification, but at least the pain stopped. I'm not up pacing the floors at two in the morning, wondering if I'm about to die, hoping that I will die, and then wondering how long it will take for someone to find my body.

BTW, my mother's GB was chronically inflamed as well. Her doctor called it a strawberry gall bladder, because when you cut it open to "autopsy" it, it's all red and pitted inside. One of my mother's nurse friends was in the operating room and she said the doctor showed it to her and the inside did look just like a strawberry skin. There have been a number of other people in my family with bad gall bladders, so mine seems to have been genetic; nothing you can do to prevent that.

I wonder if that sort of thing could be treated with an anti-inflammatory, but you run into problems in that anti-inflammatories can eat your stomach lining up when you're on them long term. So, you may very well trade off one gut problem for another one.

I also have a theory that the longer you go with it in there and malfunctioning, the less likely you will be normal when it comes out. I think your body learns to work around it, to cope, but once it's out, it keeps trying to work as if it was in there and performing badly. Your body doesn't go back to functioning as it did before it went bad. It's just a theory, but I've noticed that people that get theirs out after only an attack or two seem to be normal afterwards, whereas people like me, who had it bad for years, never seem to be close to normal.

pappardelle
Regular Member


Date Joined Apr 2009
Total Posts : 26
   Posted 5/1/2009 1:01 PM (GMT -7)   
Sorry for not responding to your question right away miscast, I have been thinking about it before I could answer you. To honest about about that question, which was a very good one, I have know clue as to what triggered my problem, (which is I think my gallblader) as far as why it would suddenly stop functioning as it should. If we are talking about symptoms though, that' s a different story. I think I was what's called asymptomatic for a period of time before my real troubles began. I say this because I was having BMs that felt like battery acid and was brite yellow in color, also, vomiting bile without realizing what it was until much later and a doctor told me. I also want you to know something, when read what happened to you, you need to know and believe that you are one blessed person. I work for a Radiology Department, unlicensed, in a hospital, and though I am not a Profeesional, I see a lot. You are a surviver, you have from what I can assess, smarts, you are intelligent, what you are asking is perfectly valid, and you need to keep at until some one actually listens, and don't stop until you are satisfied. I know your frustrations first hand, also although my situation seems less severe than yours, but don't give up. Also, keriamon, thank you for responding also, I find your experiance helpfull and informative.

miscast
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 5/1/2009 8:26 PM (GMT -7)   
Thanks for your stories Keriamon & Pappardelle. In a world of crazy, it’s comforting to know that I’m not alone. I have been worried about how one’s body can ‘set course’, and root to that road. Good health at the time of any surgery certainly has a lot to do with recovery, short term and long term. I know that I have a limited amount of time to figure this out. I might be too focused on a magic wand, but everything seems to go back to hormones. The organs receive instructions through one hormone or another (not just sex hormones), and exponential factors can get in the way as well. Genetics are certainly a strong factor – but I have no gallbladder history in my family!

The four mnemonics med students learn (for gallbladder) are: female (more cases & more estrogen), fat (estrogen stored in adipose tissue), fertile (hormonal imbalance during pregnancy), and forty (perimenopause hormonal imbalance). Even though older men catch up to women, with bad gallbladders (more estrogen in their bodies), doctors rigidly deny a hormone connection. Blinding fundamentalism exists outside of religion.

Pain and pain referral do vary widely from individual to individual, as do causal agents (I suppose). My red flags for attacks are constipation (not a norm for me). I am married to different forms of magnesium to get my digestive system flowing – but loose or not, yellow stools do seem to be a sign of malabsorption (quick transits) and less (or no) bile. So many bad GB’s seem related to global motility dysfunction. I’ve found some research on the ‘ileal brake’ theory, in connection to GB muscles that don’t fire. Distal matter in the small intestine naturally causes the GB to slow bile release. I wonder how many cases are connected to digestive disorders. And, if many are, which comes first – the chicken or the egg?

Going back to the hormone theme (male or female), balanced hormones seem to make a healthy digestive system. I hope and pray that both of you find your ‘magic wands’, whether it’s in your diet, hormones, or attitude! I think both of you have a good handle on attitude.

pappardelle
Regular Member


Date Joined Apr 2009
Total Posts : 26
   Posted 5/1/2009 8:58 PM (GMT -7)   
Your welome miscast, your dialogue has been thought provoking and helpful for me. When joined I was in a major fit of dispair and uncontrolled crying (believe it or not), trying to come to terms with the fact that I will have to suffer with intractable severe pain (7-10 on pain scale) and severe nausea and vomiting (taking oral zofran and phenergan at the same time) with no long-term plan or solution coming anytime soon. With your dialogue though, I soon began to realize that, I too am a surviver and that if I am going to give advice, then I better be willing to take my own advice.  I have an update in my situation if interested look in gallbladder again.

Post Edited (pappardelle) : 5/2/2009 12:19:43 AM (GMT-6)


eihcet
Regular Member


Date Joined Nov 2007
Total Posts : 52
   Posted 5/4/2009 5:21 AM (GMT -7)   
I've posted in other threads here and have similar issues. I started with the main symptoms in Oct '07. When I finally got my HIDA scan, it came back inconclusive because not enough dye made it in to do the emptying test. That could be a sign of a bad Gallbladder but I've read it can also be becuase I was fasting too long (instead of 12hrs, was more like 18hrs due to a test problem). In any event, after that test my GI doc prescribed a Gastric Emptying Study to rule out gastroparesis before he'd have me speak to a surgeon. Well, the GES came back as slow stomach emptying. It was a borderline result, half emptied in 90minutes but based on the curve I guess it was slow enough to call a motility problem. Without the stones in the gallbladder the doctors can't really say if removal will improve your life. If you are having pain, it's very likey to help, but, the other symptoms (nausea, pressure, appetite, etc) may not change or could get worse depending on the cause. So, it's a big question of what to do?

We talked about it, I still felt it was the gallbladder. He advised that the gallbladder and stomach are part of the same smooth muscle system and if one is operating slowly due to a virus, or whatever cause, the other may as well. He recommended we take a wait and see approach and if it didn't improve over time he'd work with me to do what was right. So, I didn't and still don't know what really is the cause, but, I read and learned that diet and nutrition play a pretty strong role in treatment for either one. Gastroparesis can improve and while I've not heard of any any gallbladder recoveries, you can ease symptoms with diet.

I'm pleased to report that over the last year my condition has improved. By keeping a food journal, and being very careful with my meals, I've learned what foods I can eat and can't eat. Interestingly, most of the foods on the gallbladder diet lists are what work/don't work. Beets, for example, do have a very positive effect on me. Eggs on the other hand, give me problems. I can tolerate a fair amount of healthy fats, and even some saturated fats from cheese and meets, but I do try and moderate it. I don't drink any coffee, soda, etc. I might have a little chocolate in a granola bar but otherwise no candy. I eat a fair amount of nuts (peanuts, almonds, etc). For a long time I was using DGL Licorice before meals to calm my stomach, but I've since stopped needing that. My challenge is eating enough food to maintain my weight without eating anything that gives me nausea or IBS problems, and I've been doing that for the last year.

So, back to then... When I was at the worst of my symptoms (pressure, nasea, no appetite), I didn't do any clenses, but I did eliminate those unnecessary foods / drinks from my diet. I was doing that for a while (2 months) before I got the courage to try the beets (I've always had an aversion to them). The first time after I had some (about 5 slices), about 20minutes later I was feeling crappy but wrapping some holiday gifts. I was in the middle of stretching while cutting the paper to size and felt a squirt inside my chest area, followed by a relief of pressure from that area. It was amazing. I felt like a stone passed (but none ever were on my ultrasound so I don't know what it was). All I know is I felt releif. about 10minutes later I got some heartburn type feelings, which I assume is from the bile, or maybe from irritation in the ducts, whatever it was I felt better.

Since then I've continued to moderate my diet and I try and eat beets a few times a week. Again, I'm really not 100% sure what my problem is, but neither are the doctors. It could also be a faulty Sphincter of Odi, or someting else in that system. I might have both GB and motility problems. I do know that when I'm feeling off, certain movements do help... For example, the gift wrapping motion, was leaning over a bed and stretching to cut the paper. I'll do that motion sometimes and wait a while, might feel better. Vacuuming is another that helps, the constant back/forth in the upper body seems to help move things around. I found that when I had/have bad days I could take in more fluids, beets, and move around a bit and help relieve some of the discomfort.

So, no cures here, but, hopefully my experiences will help someone else feel a little better.
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