Since October 07, I have been having off and on pain in my upper right side. I've had a ultrasound, nuclear imaging scan w/CCK injection, bloodwork, colonoscopy, and endoscopy. Ultrasound showed no stones, elevated liver enzymes from bloodwork (I'm 23, and only socially drink), my scan showed a 81% ejection rate and the radiologist noted hyperkinetic gallbladder, diagnosed with diverticulous, and I have a small hernia in my stomach? I've done a little research an discovered hyperkinetic means overactive gallbladder. I haven't seen my surgeon since I had the nuclear imaging scan. I ended up picking up the results from the imaging center and reading the report myself.
I have been dealing with this for only a few months now, but its been miserable. I'm in constant pain after eating any meal that is the least bit fatty or greasy. I've been through what seems so many procedures, and at this point I'm just wanting to be through with it and have my gallbladder removed. Anyone have a similar experience, or been diagnosed with a hyperkinetic gallbladder?
Hi Medlesa, welcome to the forum. From what I understand about overactive gallbladder (also called "hyperkinetic biliary dyskinesia"), it can be aggravated by fatty or spicy meals and also pretty significantly by emotional distress. Although it might be tempting to want to just "get it out," it's possible that your symptoms would continue, or you'd develop other troubling symptoms, even after the gallbladder was removed. There are a ton of posts on this site about people experiencing chronic diarrhea, for instance, after the procedure...no fun at all.
I know it must be really frustrating to be in so much pain. But I think it's important to go back to your doctor to talk about some other non-surgery options you could try first. Do you eat regular, evenly-spaced-out meals? Have you tried any medications? One of the medications that is used for this condition is Dicetel. I think it has the overall effect of other anti-spasmodics, but has been used specifically for the condition you're talking about.
Again, welcome to the forum, and I hope we can help you start to sort this out, or at the very least provide some support!
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Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.
I know it must be really frustrating to be in so much pain. But I think it's important to go back to your doctor to talk about some other non-surgery options you could try first. Do you eat regular, evenly-spaced-out meals? Have you tried any medications? One of the medications that is used for this condition is Dicetel. I think it has the overall effect of other anti-spasmodics, but has been used specifically for the condition you're talking about.
Again, welcome to the forum, and I hope we can help you start to sort this out, or at the very least provide some support!
Co-moderator - IBS Forum
Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.
Thanks so much for the quick response. I've been feeling quite alone dealing with this, and I was starting to think I was crazy until I received the last nuclear imaging scan. I do not eat regularly. I know its bad, but I honestly eat about only once a day. I've been trying to eat 3 meals, as well as I joined a gym for cardio. As you may have guessed I am overweight. The only medicines i am on currently are nexium, darvocet, and flexiril (muscles relaxer).
I had thought that having the gallbladder removed with fix things, but after reading your post I'll deffiantly look at other options first. Thanks so much for your response.
I had thought that having the gallbladder removed with fix things, but after reading your post I'll deffiantly look at other options first. Thanks so much for your response.
Hi Medlesa,
Yes, I think the first thing to do would be to increase the increase of times you eat per day, while decreasing the actual amount of what you eat each time. This will help control your blood glucose and probably your gallbladder symptoms. Exercise, too, is INVALUABLE and I think you will find some relief from this.
Keep us updated!
Co-moderator - IBS Forum
Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.
Yes, I think the first thing to do would be to increase the increase of times you eat per day, while decreasing the actual amount of what you eat each time. This will help control your blood glucose and probably your gallbladder symptoms. Exercise, too, is INVALUABLE and I think you will find some relief from this.
Keep us updated!
Co-moderator - IBS Forum
Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.
My gall bladder was dysfunctional, so I'd get times when it would dump all the bile at once. That sucked! I got mine taken out, and the pain from the sudden dumping stopped, but I found that I still have a lot of bile. Maybe I had too much bile all along. Anyways, there's nothing to be done about stopping or slowing it down, although I do take a medicine that absorbs a lot of it so I can sort of regulate it that way. Most people are told they will be 100% normal after they get their gall bladder out, and after talking to lots of people, I have found that this is just not true. Yes, a few people go back to being farily normal, with only a rare episode of being sick, but more people seem to wind up with fairly regular, if not constant diarrhea, or heatburn (and some get constipated). For me, my pain was so bad, and I had diarrhea so often anyways, there wasn't anywhere to go but up, so I got mine out.
Besides fatty and greasy foods, also watch out for caffeine; that was my biggest trigger, although it took me several years to figure it out. Even now I still can't have so much as one cola.
Besides fatty and greasy foods, also watch out for caffeine; that was my biggest trigger, although it took me several years to figure it out. Even now I still can't have so much as one cola.
Update !!!
So, the general surgeon referred me to a gastrointestial doctor before deciding on gallbladder surgery . After one visit with the dr he recommended that I have an ERCP done where he would cut my ODD E spinchter and put a stint into my pancreas. I agreed and had surgery April 23rd. Well, it didn't go so well. I woke up in extreme pain, and developed pancreatitis. I spent 4 days in the hospital, and the past week on pain meds trying to get well. As of today, I am not in the pain I was after surgery, but instead back to the same side pain that now comes with pretty much no matter what I eat salad, soup, whatever!!!! I know I still have some lingering pancreas pain bc it gets worse when I'm standing, but I'm at a loss as to what to do now. I have lost 20lbs + this past month from just not eating or vomiting. I've altered my diet, and joined a gym 3 times a week with absolutely no relief. I've been on short term disability since the surgery, but suppose to return to work tomorrow. Not going to lie when I say that I am concerned about having to work while having this now worsened tummy pain. I plan on calling the dr on Monday. I think its time to just have it removed. I've been through so much, and I'm at the point that I'm afraid to eat !
So, the general surgeon referred me to a gastrointestial doctor before deciding on gallbladder surgery . After one visit with the dr he recommended that I have an ERCP done where he would cut my ODD E spinchter and put a stint into my pancreas. I agreed and had surgery April 23rd. Well, it didn't go so well. I woke up in extreme pain, and developed pancreatitis. I spent 4 days in the hospital, and the past week on pain meds trying to get well. As of today, I am not in the pain I was after surgery, but instead back to the same side pain that now comes with pretty much no matter what I eat salad, soup, whatever!!!! I know I still have some lingering pancreas pain bc it gets worse when I'm standing, but I'm at a loss as to what to do now. I have lost 20lbs + this past month from just not eating or vomiting. I've altered my diet, and joined a gym 3 times a week with absolutely no relief. I've been on short term disability since the surgery, but suppose to return to work tomorrow. Not going to lie when I say that I am concerned about having to work while having this now worsened tummy pain. I plan on calling the dr on Monday. I think its time to just have it removed. I've been through so much, and I'm at the point that I'm afraid to eat !
Thanks for the update, I've read pancreatis is a common side effect of the ERCP, so, perhaps it's just something that takes time to heal even after the worst (pain) symptoms are gone? One question... I'm not following on the alternative procedure that you had done, specifically, I don't understand the recommendation for the stint. I've read about ERCP and in cases where that valve doesn't open properly (or the path to it is too small) that they put a stint in. In your case, it sounded like it was large enough or working too well in that it was letting too much bile through? So I'm not sure how the stint resolves that. Well, needless to say, I'm confused so if you feel up to explaining I'd love to read more about it.
I wish I could offer up some advice. You said you are on a special diet, are you following a gallbladder diet (Are you avoiding the common trigger foods Carbonated beverges, Caffeine, bad-fats, eggs, etc)?
Goodmorning. My Dr. told me that he was putting a stint into my pancreas to lower the chances of me developing pancreatitis after surgery. Didn't quite work out as planned. I used to be a avid coke drinker, but since all my stomach issues developed I no longer drink anything with caffeine, on a rare occasion I'll drink sprite, but mostly just V8fruite juice, gatorade, or water. I try to stay away from eating fatty foods, but have been eating eggs post op as to that was what the nurse recommended I eat bc it would be easy on my pancreas. Right now if I eat its either soup, or vanilla pudding. Everyhting else makes things so much worse. I tried to go to work yesterday, but ended up leaving early due to pain. I came home and rested. Today, I took off and am waiting on the drs office to call. I made an appt for tomorrow at 3pm to see my GI dr in hopes that he can spread some info on what in the world is going on. Hopefully, he'll be able to help or recommend me back to the general surgeon to have my gallbladder removed. At this point, i'll do anything. Its that bad, and I'm miserable. 
I can't do eggs very well, and certainly no fruit juices. Too much acid. Not sure what it is about eggs, since I can do other meats okay. But it sounds like it doesn't matter what you eat because everything makes you sick (been like that myself in the middle of a GB attack).
Medlesa! You poor thing! I feel your pain and I am so sorry that has happend to you! I too have a hyperkenetic gallbladder, but no stones. Basically mine and your gallbladder is in production all the time and never stops making bile. I have Biliary dyskinesia. All my scans and blood work all turn out fine except for the liver, and that shows elevated levels. This can also make the HIDA scan read higher than normal as well. Stomach problems and gallbladder probems can go hand in hand, although it's hard to know what started first. 85% of people who have Biliary dyskinesia and get the gallbladder taken out feel much better although some rebound pain can arise. Most times the rebound pain is from the stomach problems that have come about before, during or after the gallbladder problems. Also, if you have ever had a EKG done on your heart (you are young) but most times some sort of sinus Tachacardia will show up due to all the pain you are having. The body is great at showing signs of illness everywhere! I hope you feel better, I'd like to know how your progressing!
Hi! This is the first site that I have found that sounds like what I am going through. My Hida Scan showed that I have hyperplastic cholecystosis. Which, from what I can tell means the same as hyperkinetic gallbladder. Both of them empty too quickly. I started out 3-4 weeks ago with upper right quadrant pain with nausea, vommitting. It gets worse when I eat or stand or sit up. It's really hard to have a life under these conditions. Same thing for me, it doesn't matter if it's soup or a greasy hamburger, I'm still going to get sick. Now, my latest really fun symptom is diarrhea. Sometimes I can't even finish a meal before it starts. I try to only eat one meal a day. It's just to much deal with if I eat more than that. I'm tired, I'm weak, and weary. My CT Scans and Ultrasound shows that I have thickening of my gallbladder walls, as well as my gallbladder is distended. I'm not able to work either. The pain really kicks in at night. I sit up all night. Last night about 2 AM my fever started rising. I just don't know what to do. I am meeting with the surgeon tomorrow. I had HELLP syndrome when I was pregnant with my son and they took him by emergency c-section 8 weeks early to save my life, thank God they saved both of our lives. Anyway, I thought that I would never have to be in that kind of pain again, but I was wrong. HELLP stands for Hemolysis, Elevated Liver Enzymes, Low Platelets. It was the elevated liver enzymes that gave me such horrible pain. Well, I am having pain like that again. It's not fun. As a matter of fact, I am starting to get in such pain that I am going to stop typing. Can anyone shed some light on my situation? I too just want him to take it out. My situations sounds alot like everyone elses, but just digging for any kind of information. Does anyone's pain radiate around their back and into the rib cage? Mine does, it's painful. Any and all comments and suggestions will be glady taken!
My GI dr finally referred me back to the general surgeon last week. I got into see the surgeon last Tuesday (May 20th), and surgery to have my gallbladder removed is scheduled for this Friday May 23rd. I have been in just terrible pain that I am ready to take the risk of surgery. Dr. says though he can't be for certain that this will take care of the pain, but is hopeful. Once I am able to I will post back and let you know how it went. I'm hoping my experience in the hospital will be better than what happened last month. Keeping fingers crossed that it can be preformed laproscopically, but Drs. preparred me for possible open. I'm hoping that this is the answer, bc I can't continue to live like this.
Misty Brooks said...
</b> 2 AM my fever started rising. I just don't know what to do. I am meeting with the surgeon tomorrow. I had HELLP syndrome when I was pregnant with my son and they took him by emergency c-section 8 weeks early to save my life, thank God they saved both of our lives. Anyway, I thought that I would never have to be in that kind of pain again, but I was wrong. HELLP stands for Hemolysis, Elevated Liver Enzymes, Low Platelets. It was the elevated liver enzymes that gave me such horrible pain. Well, I am having pain like that again. It's not fun. As a matter of fact, I am starting to get in such pain that I am going to stop typing. Can anyone shed some light on my situation? I too just want him to take it out. My situations sounds alot like everyone elses, but just digging for any kind of information. Does anyone's pain radiate around their back and into the rib cage? Mine does, it's painful. Any and all comments and suggestions will be glady taken!
</b> 2 AM my fever started rising. I just don't know what to do. I am meeting with the surgeon tomorrow. I had HELLP syndrome when I was pregnant with my son and they took him by emergency c-section 8 weeks early to save my life, thank God they saved both of our lives. Anyway, I thought that I would never have to be in that kind of pain again, but I was wrong. HELLP stands for Hemolysis, Elevated Liver Enzymes, Low Platelets. It was the elevated liver enzymes that gave me such horrible pain. Well, I am having pain like that again. It's not fun. As a matter of fact, I am starting to get in such pain that I am going to stop typing. Can anyone shed some light on my situation? I too just want him to take it out. My situations sounds alot like everyone elses, but just digging for any kind of information. Does anyone's pain radiate around their back and into the rib cage? Mine does, it's painful. Any and all comments and suggestions will be glady taken!
Unfortunately, I don't have any suggestions for you. Nothing has really helped me, other than plan old rest. I try to eat earlier in the day, so that at night I can try to sleep. I've had several different meds that never really did the trick. I wish you luck. What did the surgeon say to you ?
Ugh, it sounds horrible...I am wishing you all the very best...I hope this helps you get rid of some pain! Sounds like you've been through an awful lot...hang in there!
Co-moderator - IBS Forum
Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.
Co-moderator - IBS Forum
Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.
Hello! I was just diagnosed with this wonderful hyperkinetic gall bladder and was told my options are a very strict diet or surgery to remove it. I'm actually surprised there was something wrong with me. I started having stomach aches about 6 months ago, but I just thought I was eating too much at certain meals. I have had NO pain in my upper ride side associated with this condition except when I had the HIDA scan. My pain is usually in my lower intestines....and I'm very gassy. I'm really thinking surgery is not an option for me especially after reading the posts in this forum. What are the long term side effects of this condition if you leave your gall bladder in?
<<What are the long term side effects of this condition if you leave your gall bladder in?>>
I had a bad gall bladder for 5 years, because doctors couldn't figure out that that was my problem.
The attacks never go away. Altering my diet, I was able to put distance between occurences, but they never went away. In fact, as time went on, they became more frequent until, at the end, I hurt all the time and had diarrhea almost every day. In short, life became unbearable. As of now, there's no cure for a bad gall bladder, so the real long-term effect that you face is never getting rid of the pain; of living with that forever. Now, for people who only have an attack once a year, that's bearable. But if you get like I did, and you hurt all the time and you can't function in normal society because your guts are tore up all the time, it's not liveable.
I have a theory that the longer you suffer from having a bad gall bladder, the less likely you are to return to normal after having it out. It seems to me, of the people I've asked, that those who got their gall bladders out soon after getting symptoms, are less likely to have GI problems afterwards. If I'm right, the longer you keep it, the more likely you are to have problems afterwards. I think the body has to learn to compensate for the irregular bile flow and it doesn't necessarily compensate in a good way. And once the GB is out, it doesn't go back to working like it did before it went bad; it keeps working as if it was still having to deal with a bad GB in there. That's my theory, anyways.
I had a straight gall bladder removal--no fooling with my Spinchter of Oddi or putting in a stint or anything like that, and I had no complications from the surgery and no pancreatitis. It seems like the doctors tried to do an alternate to Medlesa, to avoid taking her GB out, and they made her worse. But she posted a long time ago; she was supposed to get her GB out and she hasn't come back since then. Hopefully once her GB was out, she got better and didn't to come here anymore.
I had a bad gall bladder for 5 years, because doctors couldn't figure out that that was my problem.
The attacks never go away. Altering my diet, I was able to put distance between occurences, but they never went away. In fact, as time went on, they became more frequent until, at the end, I hurt all the time and had diarrhea almost every day. In short, life became unbearable. As of now, there's no cure for a bad gall bladder, so the real long-term effect that you face is never getting rid of the pain; of living with that forever. Now, for people who only have an attack once a year, that's bearable. But if you get like I did, and you hurt all the time and you can't function in normal society because your guts are tore up all the time, it's not liveable.
I have a theory that the longer you suffer from having a bad gall bladder, the less likely you are to return to normal after having it out. It seems to me, of the people I've asked, that those who got their gall bladders out soon after getting symptoms, are less likely to have GI problems afterwards. If I'm right, the longer you keep it, the more likely you are to have problems afterwards. I think the body has to learn to compensate for the irregular bile flow and it doesn't necessarily compensate in a good way. And once the GB is out, it doesn't go back to working like it did before it went bad; it keeps working as if it was still having to deal with a bad GB in there. That's my theory, anyways.
I had a straight gall bladder removal--no fooling with my Spinchter of Oddi or putting in a stint or anything like that, and I had no complications from the surgery and no pancreatitis. It seems like the doctors tried to do an alternate to Medlesa, to avoid taking her GB out, and they made her worse. But she posted a long time ago; she was supposed to get her GB out and she hasn't come back since then. Hopefully once her GB was out, she got better and didn't to come here anymore.
I have a gall bladder ejection fraction of 90 percent and have been in pain 8 years. I finally figured out that this is what was causing me so much hell because all my other tests were normal. I think it would be beneficial to post a list of doctors who treat it since so many of them waive it off as normal. Trust me, I checked myself out of the hospital today (I have pancreatitis) but since they do not recognize this condition and balked at removing my gall bladder I had had enough! They really need to start dealing with this because I have seen so many posts of people in pain and who didn't know what was going on, me included. I had gotten and ERCP with Manometry because they said everything else was "normal". How can we get the medical community to recognize this as a condition so people will stop suffering?
ouchie momma525 said...
I have a gall bladder ejection fraction of 90 percent and have been in pain 8 years. I finally figured out that this is what was causing me so much hell because all my other tests were normal. I think it would be beneficial to post a list of doctors who treat it since so many of them waive it off as normal. Trust me, I checked myself out of the hospital today (I have pancreatitis) but since they do not recognize this condition and balked at removing my gall bladder I had had enough! They really need to start dealing with this because I have seen so many posts of people in pain and who didn't know what was going on, me included. I had gotten and ERCP with Manometry because they said everything else was "normal". How can we get the medical community to recognize this as a condition so people will stop suffering?vin
I have a gall bladder ejection fraction of 90 percent and have been in pain 8 years. I finally figured out that this is what was causing me so much hell because all my other tests were normal. I think it would be beneficial to post a list of doctors who treat it since so many of them waive it off as normal. Trust me, I checked myself out of the hospital today (I have pancreatitis) but since they do not recognize this condition and balked at removing my gall bladder I had had enough! They really need to start dealing with this because I have seen so many posts of people in pain and who didn't know what was going on, me included. I had gotten and ERCP with Manometry because they said everything else was "normal". How can we get the medical community to recognize this as a condition so people will stop suffering?vin
My HIDA scan says I have a Hyperkinetic Gall Bladder (92%) and have an appointment to see my Dr. on Wed. I have done so much reading and found that Dr's seem to be mixed on if the gall bladder has to come out or not. I was wondering what part of the county do you live in, as if my Dr says it needs to come out maybe if you live close you could see him.
I am a new member. Help. I had nonfunctioning gb for years. after millions of test nuclier show 12 % ejection. I got it out laprascopicly 2 weeks ago. It is less pain but after beeng brown for few days my bm is pale again. does it mean that bile not going there? or it not enoeph of it? Sometimes I have bright yellow diarhea some times constipated. can only eat yams, potatoes, fish a little chicken zukhini and apple juice. anything else make gas cramps.
Any thoughts how long it will be after sergery? The pain is better though. I just worry about bile not going where it soppose to. sorry for my spelling.
Any thoughts how long it will be after sergery? The pain is better though. I just worry about bile not going where it soppose to. sorry for my spelling.
hello, this is my first time ever getting into one of these rooms but i think i qualify. 3 years ago i was completely normal , healthy, active, i smoked, i drank, i dated, i had fun. now im a wreck. first w/ heart palpitations..doctor said anxiety .so i took zanex..had unbearable heart palpitations.nausea ..lightheadeness.. panic attacks.. never had them before in my life... ever in my entire life.. i was 25.. now nearly 28 ..male was 190lbs when this started now im 230 lbs..saw a cardiologist..gave me a haltermoniter at first to see what it was. then sent to ohio state where they did EP study to ablate my heart and found cardiomyopathy (mild)..been to 4 cardiologists so far.. they all have agreed none of these symptoms are caused by the heart. so anyways..been to see neurologist..he said nothing was wrong with me except maybe anxiety. i have had 3 general docs they all say anxiety..except the one i finally found who has sent me to all these specialists..he finally sent me to a GI this past year.. they found an elevated left hemi diaphragm..so general doc sends me to thoracic surgeon.. i have major thoracic surgery done (about 4 months ago) since then i still have all the same symptoms and these are..profound fatigue all day long (wanna sit down all the time) blurry wierd vision (feels like im out of my body or something wierd).. constant movement in my stomach like bloating w/ movement that feels like heart palpitations..wierd anxiety feelings i never had before this crap started... sorry this is so long ..im really messup up.., i cant concentrate. its taking all the strength i have to write this post.. just had another test from gi.. showed I have 95 percent biliary output. from my gallbladder.. is this the cause..???? i cant eat without discomfort, i cant work (but i do. i have no choice) im miserable all the time and it never goes away..YEA im depressed.. i wasnet before this started..what is this? and no doctor has helped me yet. none of them almost 200,000 dollars later. I am an occupational therapy assistant. i work in the health field and whatever is wrong with me is ruining my life..im at wits end emotionally and physically..