This is super-long but hopefully it will be helpful for people who suffer from this and don't know it.
First thing about GB disease: it’s quite often hereditary. Not everyone who has a parent, grandparent or sibling with it will get it, but it’s more likely (my mother had hers out, then I had mine out too). Of course some people get it without anyone else in their family having had it previously. But people with a family history should stay alert to the symptoms. Secondly, certain ethnic groups are more prone to have it. People of Native American descent are more likely to have it than just about any other ethnic group (unfortunately, I can’t tell you the rates of occurrence in other groups).
The second thing about GB disease: it comes in several forms.
There is the most common form of GB disease: the infamous gall stone. Some people have them and never know it (asymptomatic) and they get discovered by accident. Most people find out they have gall stones when one gets lodged in the bile duct and they get horribly sick and have intense pain (as bad or worse than labor). Gall stones are almost exclusively found by using an ultrasound. There has been some limited success with breaking them up using ultrasonic waves, like they do for kidney stones, and last I heard there is a medicine that will help dissolve them, but both methods are ranked as poor treatments because they cannot completely clear away the stones and the cause(s) behind the stones will still exist, meaning you develop more later. These are really only done for people who cannot have surgery or need to delay it for some reason. Surgery is almost the exclusive treatment for stones. And doctors will almost always remove a GB with stones in it, even if it has not caused any problems yet, because if one of those stones ever lodges in the bile tract, you’re in for a world of hurting and then you have to have emergency surgery. Better it’s a planned surgery that can be done laparoscopically. Emergency surgery may (but not always) require an old-fashion incision and hospital stay and longer recovery time.
The second type of GB disease—and probably the second most common form—is sludge. This is when the cholesterol in your GB doesn’t form stones but rather has a sand-mixed-with-water consistency. I think this phenomenon is a fairly recent discovery, or at least they are now taking it much more seriously. Sludge-producing GBs are now surgically removed when discovered. My stepmother had this type and her doctor told her it was worse than having stones because the sludge will leak out, unlike stones, and cause a lot more problems to the intestinal tract. Sometimes sludge will show up on an ultrasound (depends on how good the equipment is, how good the technician is and how thick and visible your sludge is). More often than not, you will need a hidascan to determine GB functionality; if you have sludge present, it won’t function properly.
When you have a hidascan performed, you are injected with a radioactive element that will concentrate in the bile in your GB. You will lay on a table and a camera head will show the technician where the radioactive stuff is. When it is sufficiently concentrated in your GB, the technician will give you an injection of a medicine which will simulate eating something and will make your GB empty. For many people this drug will cause discomfort or queasiness—especially if they have something wrong with their GB—but rarely vomiting. The technician will then track how long it takes the radioactive stuff (i.e. your bile) to get out of your GB. If it dumps out too quickly or comes out much too slowly, then they know you have something wrong with your GB and they will make arrangements to have it removed.
The third type of GB is a malformed GB—sometimes referred to as a “strawberry GB” because of how it is shaped and colored. My mother had this kind. These abnormal GBs can sometimes be seen on ultrasounds, but problems with it may not be detected until a hidascan is performed. It will be removed surgically.
The fourth type of GB is the kind I had and it is a malfunctioning GB. Mine was officially diagnosed (after it was removed) as being “chronically inflamed.” Mine was chronically inflamed because it wasn’t releasing bile properly, meaning it backed up in there, making it inflamed, then it would suddenly dump all of it out at once and make me very sick. This kind can only be diagnosed by hidascan (because it looks perfectly normal on an ultrasound). It will be removed surgically.
If you have a hidscan performed and it comes back abnormal, you can then see a surgeon about having it removed. In many cases, although they know something is wrong with it, they may not know exactly what it wrong with it until it is sent for testing after removal. It may only be then that sludge, inflammation or deformity will be detected. Cancer of the GB is very rare, but they will check for it when they send your GB off to have it tested after it is removed, just to be sure.
Now let’s move on to symptoms. Symptoms can vary wildly, but most people will have some of the following to some degree:
*Vomiting—usually contains some yellow fluid and burns worse than normal acid reflux/vomiting
*Diarrhea—usually contains yellow fluid and burns the rectum
*Intense pain in the upper abdomen and/or under the right rib cage
*Feeling like you have a “lump” or “golf ball” under the right rib cage
*Tenderness in the right upper abdomen
*Aching, pain or stiffness in the right shoulder, arm and elbow
*Feeling like you have trapped gas
*Feeling full to the point of being nauseous long before you finish a meal
*Feeling sick after eating certain foods, the most common culprits being fried foods, fatty foods, greasy foods and carbonated and caffeinated drinks
*Suddenly feeling nauseous for no apparent reason (i.e. you’re not in the middle of eating)
*An inability to lay flat on one’s back while feeling sick or while in pain
*Pain is often accompanied by chills, or you develop chills after having a bowel movement or after vomiting
Personally, I vomited one time in 5 years of having GB disease, but I had a lot of diarrhea. Some people are diarrhea-predominant, like me; some are vomiting-predominant; and some have equal measures of both. It wasn’t until right before I had my GB out (i.e. after being sick with it for 5 years) that I started to hurt on my right side; I felt like I had a lump. All the times prior to this I had hurt all across my diaphragm and not on my right side in particular. I didn’t have any tenderness on my right side until the end, and even then not a lot. This confounded a lot of my doctors for some reason and led to me being diagnosed with IBS rather than GB disease. While most people do hurt on their right sides, I’m living proof that it can radiate out across the abdomen without causing tenderness. And for some people the pain will be all along the right side of their torso, not just the upper half. I also hurt into my right shoulder, arm and down into the elbow. This is a pretty common symptom. And I don’t think I’ve met a person who has GB attacks who can lay flat on their back. You have to sit UP! Personally, I was a walker; I paced the floor when I had an attack because lying down was impossible and sitting down seemed to make things some worse too.
A GB attack: Funny enough, GB attacks often happen in the middle of the night. Don’t get me wrong, you can have them immediately after a meal and you can have them last days and weeks on end, but it’s very common for people with bad GBs to wake up in the middle of the night just horribly sick. Most of mine came on in the middle of the night and lasted 1-2 hours, although I did have a few that came on during the middle of the day and lasted upwards of 8 hours, and then there was that attack when I was in Ireland that lasted almost 3 weeks without let up.
The nightly attacks go like this: You wake up some hours after going to bed—for me that was around 2-3am—and you are in pain and feel nauseous. You get up and pace the floor for half hour or more. Then you start to feel the need to go to the bathroom and you go take a seat. Then the pain and nausea starts to build up and dying doesn’t seem like such a bad option at this point and you hold a garbage can in front of you because you can’t tell which way it’s going to come out first. Then you have a bowel movement—it may even be mostly normal at first. Then you have another immediately following that one and it’s almost explosive—full of yellow bile and some solid pieces (also yellow) and boy, does it burn. You may even have a third movement right after that, although most of it should be out of your system by now. You sit there for a few minutes and the pain and the feeling that the world might be coming to an end slowly subsides. You get terrible chills at this point and you get back in bed with a heating pad or hot water bottle (because you still have cramps and are sore from cramping) and you’ll cover up with every blanket you own, prop up your pillows and go back to sleep sitting up (because you’re still too sick to lay down flat). After an hour or two you will return to normal and will cast off your extra blankets and adjust your pillows and lay down like normal. The next day you may be sore from the cramping and you may still have lingering bile diarrhea.
Now this description doesn’t match everyone due to symptoms that are specific to the individual, but it’s what I went through. If that sounds at all familiar, then you probably have something wrong with your GB.
Because my GB functioned some of the time, it didn’t show up on the first two series of tests that I had run. Unfortunately for me they were done when my GB was functioning properly, which is why I was misdiagnosed with IBS. The third set of tests I had run were done when I was in the middle of having a lot of problems and my GB had gotten so bad it ached all the time and felt like a lump. If you think you have a GB problem but it doesn’t show up on tests, don’t accept IBS as the answer; keep nagging and keep getting tests until it shows up. Obviously get your tests done when you are in the middle of a bad spell so that you can make sure your dysfunction shows up.
Treatment and Coping: Here are some things I learned over the course of five years that help prevent attacks. Caffeine was a major trigger for me. When I gave up coffee, caffeinated tea, and cokes (carbonation tended to make me feel slightly nauseous, made my shoulder hurt, and gave me a trapped gas feeling, so I didn’t even drink caffeine-free cokes), I had many, many fewer attacks. I still got bile diarrhea quite a bit, but I hurt less and woke up in the middle of the night having an attack a lot less. My mother said pizza was her killer. She said because it’s fatty and greasy, it usually does a lot of people in. I am a pizza-fiend, so I had a hard time giving it up; I learned that if I could eat it hours and hours before going to bed (like before 4pm and go to bed at 11-12 at night), then I was less likely to wake up in the middle of the night sick. It would still give me bile diarrhea, though. So you may want to go on a low-fat diet and cut out the greasy foods and the caffeine and carbonation and see if you can’t improve your symptoms some. I have also heard from others that alcohol is very bad about causing sickness and attacks, but I never drink, so I didn’t have to cut that out personally.
For the diarrhea I took Pepto Bismol pills. They were easy to keep in my purse and I could take as many as I needed to get the diarrhea to stop. Others may prefer Imodium, but Imodium is so strong that it usually gives me bad constipation (from one extreme to the next). In a pinch I would take half of one, but Pepto was my drug of choice. I also got a doctor to prescribe me some pain pills (proproxy) and hyoscamine for cramping. I never really noticed that the hyoscamine did anything—but that may be that that particular kind didn’t work on me in particular—but the pain pills can help keep your attacks from getting too bad, help when you have an attack that won’t go away and help with the soreness the next day.
I found that heat made me feel less sick and helped relax my spasming stomach muscles a little. If I got sick at a restaurant, I would go out and sit in the car (a very hot place to be in the summertime) and get warm that way. When at home I had a heating pad and a hot water bottle.
Since I only vomited the one time, I can’t give any help with that, except to say that liquid Pepto Bismol can help with nausea and can help soothe your esophagus when it is burned by the bile. When I vomited, milk didn’t do a thing to help and water tends to make that kind of burning worse. You might try ice cream or milkshakes, but, like I said, bile acid is about the worst kind of acid you can regurgitate. I was still burning the next day. And I have never regained my like for Tuna Helper.
Hello I was just reading the post about gallbladder problems that is the direction me and my gasto doc went also because of right upper quad pain and nausea but I had constipation instead of dia, but my gallbladder is functioning at 48% so he wants to repeat the hida in 6 weeks but he does not really anticipate it being any worse so why do it? At this point he doesnt even think that my symptoms are gallbladder related anymore given the fact that my hida came back as 48 but I have had every test known to man and that is all that came back slightly out of wack. So should I have it repeated? Is there anything I can do? please help me i have lost 26 lbs because i am either nauseated or scared to eat because of the pain it brings
I think my GB is on the fritz. My doctor did tell me though that she wouldn't want to remove it, because some function was better than none at all.
Like the past 12 hours for me has been, late night explosive gas and pain. Managed to sleep sitting up. Then, major pain mid navel, left side and HOT Diarrhea that acted constipated until WHAM it was not. I am at work and I've had two bouts of loose, but not a lot and the "Sunshine" poop, bright yellow.
My reflux has also been acting way up lately and I do get intermittent pain in my right shoulder blade. And if I lift my arm up, it really hurts there, like beside where my armpit is but in my back. And last saturday, the pain there was awful and it radiated into my arm and elbow.
So, I am so tired of all the problems and pain, but according to my dr, if I lose may GB I will be unable to do anything.
Thanks so much for posting the information on gall bladder disease and irritable bowel syndrome diagnosis. Once or twice a month for over 20 years I've had bouts of diarrhea about 5 or 6 hours after a meal. Almost always after dinner, but there was one restaurant where I'd get a lunch of grilled pastrami sandwich, French fries, and a Coke and 5 hours later, without fail, I'd have an attack. It would start with pain right below my rib cage, and a lot of gassy gurgling noises. Then I would have a couple of normal bowel movements followed by 1 - 3 bouts of burning diarrhea. I felt agitated, and often get the shakes. I would also have extremely stuffy sinuses for about an hour during the diarrhea. Over the years I explained my symptoms more than once to three different primary care doctors, and they each had no idea. One time was so bad, I had my wife take me to the E.R. (they said I was shaky and agitated due to dehydration). After that I demanded a referral and my doctor at that time sent me to a specialist for a colonoscopy. The specialist said my colon looked perfectly healthy so I must have irritable bowel syndrome. I was suspicious of the diagnosis and felt like he was labeling it as IBS because he didn’t really know. Since then I've just suffered with it.
Last week I started having constant, extreme pain right below my rib cage and lost all interest in food. I was also extremely agitated and there was no position, standing, sitting, or laying down, that was comfortable. After a lot of vomiting at midnight, I went to the E.R. They gave me an IV pain killer and some anti-vomiting drug. I felt a lot better and they sent me home saying to come back if a fever developed. After the meds wore off, I was miserable in bed all day the next day and developed a low grade fever in the afternoon. I went to see my regular doctor who referred me for ultrasound. Turns out I had a gall stone stuck in the bile duct and my gall bladder got infected. The ultrasound tech said he could also see some sludgy bile (like what was described above) and some large gall stones that had probably been there for years. My gall bladder also showed a lot of edema. I went back to my doctor who sent me home with two antibiotics and pain meds. He said I'll feel better when the antibiotics did their job. So far, after 3 days of antibiotics, I still have pain but the fever is gone. He referred me to a surgeon to have my gall bladder removed when the infection is cured.
After reading the posts above, I'm very hopeful that removing my gall bladder will fix my periodic diarrhea problem. I'll post back to this topic in a few months with an update on that.