So Confused...

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Longgggggggg story.. I posted here a few years ago, about what my GP and GI thought may be GB problems. I had eaten some homemade venison sausage (nothing out of the ordinary for me AT ALL) and got a wicked bout of indigestion. Then I lost my appetite for 3 days. GP put me on omeprazole and I started getting nauseous in the morning. I had to stop taking it for fasting blood work and an upper GI with small bowel follow-thru and started back up on it and all was well. Everything came back normal and I didn't get indigestion again so I stopped the omeprazole after a few months.

A few months after that, I ate some sausage again and started getting a burning pain in my upper right side. Went to my GP and he referred me to a GI doctor. Since I was a new patient, I had a month wait to get in. I told my GP that and he didn't want me to wait that long and sent me for an US since he thought it was my GB (due to the fatty food). US came back normal and my GP told me to wait for my GI. During that month, I had pain all over my right side - URQ, flank, even lower down to my groin some days. Burning, cramping, something every day but never really bad by any means. If I got distracted by something I barely even knew it was there. It's always gone when I wake up in the morning and progresses throughout the day. Only morning symptoms is sometimes nausea and a bad taste in my mouth which greatly subsides after I brush my teeth and eat something small. Some days I would burp/pass gas all day long, some days were fine. I never was able to correlate it to something I ate. I tried eating small healthy meals and it didn't change. I tried eating fatty meals and nothing changed.

Went to GI appointment and they thought GB too. Scheduled a HIDA scan, a urinalysis and blood work for inflammation. Blood work and urinalysis were fine, HIDA scan didn't "reproduce" symptoms but they were there before/during/after like any other day. Doctor had called me to tell me they suspected overactive GB (didn't tell me the number at the time). I found my results and it was 98%. But by the time they wanted to see me again after the HIDA scan, I was feeling fine - no nausea, no pain, eating my regular diet from before (albeit not a healthy one).

Well a few months ago, it all started coming back but now with some awesome diarrhea. I went back to my GP for an annual physical exam and he wanted to brush it off which ****** me off a tad. So I dealt with it for a few weeks but then it came back with a vengeance one day in my lower right abdomen that I panicked and called. He told me to go back to my GI since he thought it was that due to the diarrhea. They did a urinalysis and that was fine to rule out kidneys. I had the routine blood work for my physical which covered liver, pancreas and that was fine. GI doc got me in FAST this time thankfully, went over my old records. Still had IBS in the back of their mind but sent me for another US, more inflammation bloodwork and a stool sample this time. Everything so far has come back normal, but one stool test (I think the one for blood) wasn't labeled with my name so they wouldn't process it.

I barely have ANY pain/discomfort but if I do, it's upper right quadrant. I've had this problem with a few almost like zits on my lower right abdomen that just won't heal and I think that's been throwing me off a bit. I get nausea maybe once a week in the morning still and I get bloated every once in a while. The GI wanted me to do the low-FODMAP diet, but I've been finding it difficult as my boyfriend and I went on vacation for a week (pre-planned) and we've had a few "Octoberfest" parties and it's hard to only eat vegetables when that's all that is there that is low-FODMAP. I've been doing the best I can, but it surely isn't easy when 90% of what you eat has high FODMAP in it. The only thing that hasn't changed no matter what is the diarrhea. I don't remember having it the first time around and it's been all over the spectrum. Before this all started I had noticed that my bowels were getting lighter in color, but still solid. Now it's all diarrhea (not liquid, but soft and broken) and could be fatty/floaty and yellow one day and green the next and light brown the same day. But it's persistent.

I started on probiotics about 3 weeks ago. I had a few OK days in the beginning, but I also know that probiotics don't start working right away so maybe it was luck. I've also noticed that I'm very lazy a lot, not fatigued persay or want to sleep all the time. I'm awake all day long no problem, I'm just lazy. I don't want to do anything (I feel bad for my dog). I'd rather sit on the couch all day and watch Netflix than do laundry or dishes (who wouldn't, but before I would at least do it). I've also been really foggy and have difficultly concentrating. I have no idea if any of it is related or if I'm just freaking myself out because of all of this. The inconsistency of all of this makes me wonder if it's my GB at all. I'm debating whether to get another HIDA scan or not, or if I should ask for an endoscopy or colonoscopy (even though I don't want to do them!). I've also read so many stories that removing the GB didn't help or it made it worse.

Thoughts inside the head and the internet are scary places... Any suggestions would be appreciated.

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  • Posted

    Hi there cmross! I'm sorry to hear you've been having so much trouble. I've got no answers for you - but can commiserate as I'm experiencing very similar symptoms (all my GB tests are clear including HIDA) including constant upper abdo pain, nausea, no appetite and fatigue. My surgeon & GI not convinced it's gallbladder (yet my GI said it's classic gallbladder symptoms). I'm having a gastroscope Wed so may get more answers. If not, I'm going on the hunt for a surgeon that will give a second opinion. That's the only avenue I can think of right now. Take care...it's no fun!

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    • Posted

      I appreciate the reply even if there isn't much help smile I just makes ya feel better to have someone wish you well. Did they tell you what your ejection fraction was on the HIDA scan or did they only say it was "normal"? My GP thinks 98% is normal (anything over 35%) but my GI thinks it's overactive and I've read a fair amount of stories on overactive gallbladder online. I'm just afraid that my pain is SO slight, the nausea is so rare (what I call rare compared to 24/7) but my soft stools are constant that it's not the reason. It just seems so - unusual?

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    • Posted

      I agree it is a bit strange. My dietitian thought I had post-viral IBS and put me on FODMAP. It was hard to follow! The only other thing you might consider (if not already) is food intolerance. I was diagnosed with Coeliac via an endoscopy earlier this year and at first I was very sceptical but it has helped me with soft stool problems. Hmmm a mystery! I like the other poster's idea around bile salt.

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    • Posted

      Hi ibow, how did u get on with your gastroscopy? I have similar symptoms to you, abdo pain on the right under the ribs, and horrendous back pain going upto my shoulders. My consultant says its classic gallbladder symptoms but my ultrasound, gastroscopy and CT scan have all come back normal. I'm due for a short synacthen test which checks for addisons disease as the pain is near the adrenal glands on the kidneys but he doesn't think thats the problem, then I've got an mri scan which will check how the gallbladder is working. 

      I take it you're across the water as things are different to here in the UK.

      Did they find anything?

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    • Posted

      An MRI will not check how the gallbladder is working - a HIDA scan will do that. Hopefully that's what you're having done?

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    • Posted

      Hi, its an MRCP which I believe is similar as they also put in a radioactive substance to check the working of the liver, gallbladder, bile ducts, pancreatic duct and pancreas. I'm hoping to have that in about 3 weeks time then I'll see my consultant again but as we all seem to be is in constant pain while we wait.

      How are you doing as I've notice a few posts from yourself on this site? I'm new to all this but its good to hear what other people are going through which is similar.

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    • Posted

      I'm doing OK - I have surgery to remove my gallbladder this coming Thursday (10/20) for an "overactive" gallbladder. Somewhat of a rarity from what I can tell and there isn't as much substantial proof that it really is a problem and that surgery will help. All I can do is hope that I'm at least better than I am now when it's out.

      Hopefully the MRCP will show something - if not, a HIDA scan might also be a good route for you to go. That's how they found what is "wrong" with me or so I hope.

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    • Posted

      Hi Katherine

      My gastroscope was clear - just confirmed that everything is healing nicely post-coeliac diagnosis! I'm no further along with answers, and I'm sorry to hear you are in a similar position. My surgeon said that based on my test results it's only a 10-20% chance it's gallbladder. I'm having a gastric emptying study next week. I'm in less pain this week as I've been sticking to a diet of soup and rice. I hope your MRI goes well. I'm in Australia ? but from reading these post it seems like we have a similar model to the NHS. Thanks for bring in touch - these discussion are so helpful.

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    • Posted

      Hi, I've just received an update from my consultant to my GP and after the short synacthen test and the MRCP if they both come back normal they are going to do a HIDA scan on me. I'm on nifedipine which is encase I have Sphincter of Oddi dysfunction, hopefully that will help the spasms but its hard to take as you do get very light headed.

      Good luck for thursday, let me know how you get on when your recovering.

      I would like to think that everone on this site is a minority and there are many more that go through this and are feeling fine afterwards. We have to hope and be positive.

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    • Posted

      Hi lbow, I haven't heard of the gastric emptying study what does that involve? 

      Its not very good when you have to eat just soup and rice, I find I don't really eat during the day but what ever I eat it just starts the pain going until it reaches my shoulder right  and neck. 

      Does movement make it worse for you, it does for me if I'm too active.

      Thanks for replying.

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  • Posted

    Hi, I have to compliment you on your narrative, lots of good detail. In my experience with what you are describing, I think you have bile salt malobsorption (which is called BAM on this site).  

    I got diagnosed with IBS-D by my gastroenterologist, but it's important to know that a significant number of people don't produce a hormone which is responsible for the body's ability to reabsorb bile, which is an acid.  It is bright yellow, and is very, very caustic. They are testing your stools, which probably don't have any bile in them. So, they're missing what's going on.  

    Bile is excreted into your small intestine during digestion to break down fats.  At the end of the digestion cycle, in the large intestine, this hormone is responsible for processing the bile to allow it to be reabsorbed. If it's not reabsorbed, you have diarreha constantly.  So, IBS-D is sort of a catch-all diagnosis.  In the meantime, you're not getting any relief and you get to have all these bad experiences. All my tests came back "normal" too. I suggest you research bile acid malobsorption on the internet.  

    So, this may or may not be your gallbladder.  Your gallbladder acts as a valve to measure out the bile.  A diseased gallbladder can measure out too much or not enough bile during the digestive process. Too much bile and you will also get diarreha, too little and you're constipated.  But if your body can't absorb the bile because of a lack of the hormone, then you get lots of diarreha.  

    An endoscopy and colonoscopy were performed on me, too.  All was "fine."  Your gastroenterologist should know about bile acid malobsorption--I'm surprised it hasn't been mentioned.  There is a BAM group on this web site.  A medication, called cholestyramine can help absorb the excess bile.  I had to have my gallbladder removed, so bile drips constantly into my small intestine now, and I'm on cholestyramine which helps bind the bile salts and reduce the diarreha.  Sometimes, I still have to use immodium, but I can still live my life!

    Hope this helps!   

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    • Posted

      Did you have your gallbladder out due to stones? Because my HIDA scan points to the GB overmeasuring.. I'm apt to lean towards it being the problem. But I'm so worried about what might happen after surgery.. I surely don't want to get worse!

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    • Posted

      I had my gallbladder out due to stones.  I didn't have large stones, just grainy sludge in my gallbladder, kind of like gravelly mud.  And, this type of stone formation often doesn't show up when an ultrasound is done.  The tech has to know what they're doing to find them.  

      Whether you have BAM after the surgery is a concern, but, realistically, if your gallbladder is diseased it really needs to come out.  They can get infected, thicken and rupture. Infection can spread and get nasty. They can also become cancerous.  Some people will tell you that there are ways to break down and clean out the stones and that they've done it themselves or that you can have surgery to have the stones "washed out."  

      But once your body tends to form stones, it will form them again, no matter what you do.  And cleanses, including liver cleanses, can be risky. Going to a health food store and asking someone what to do about your gallbladder or liver is not a good idea; they have no idea about what's involved medically and want to sell you a product.  

      My life after gallbladder surgery certainly wasn't what I'd hoped it would be.  No one told me that if I had BAM already, I'd likely have that problem whether I had my gallbladder or not.  But I can cope.  It's not care free, or eating whatever I want. I have to be extremely careful. Sometimes, you just have to cope with what happens, and move on as best you can! xx     

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    • Posted

      Hi, there, my reply got "moderated"  I'll keep an eye out and if it isn't released, I'll try again.  You can send me a private e-mail if you wish!

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    • Posted

      Looks like your last post came through! :-)

      I definitely don't take anything my doctor doesn't recommend. I'm not one to take supplements or anything that I don't need.

      Is BAM something that is constant? I feel like if I had BAM, I wouldn't have had those few years of being normal inbetween. Maybe not.

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    • Posted

      Well, I think that sometimes, for no reason (I think the term is ideopathic) the body just stops doing something.  There is a test for it, but it requires collection of body waste over 8 hours.  Now there is also a blood test for it, developed in a famous clinic in the US, and you can send the blood there.  But, of course, prohibitively expensive.  

      I was pretty normal as a kid, and didn't develop problems with BAM until I was in my 40's, though I always had an iffy stomach.  

      But, once you develop it, it's constant.  sad 

      Please let me know how you do!

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    • Posted

      I will. It's nice just to be able to talk to someone sometimes.

      I was the opposite. I've always had an iron stomach. I knew some things set off my original IBS where I would cramp for anywhere from 2-5 minutes and have a bout of urgent diarrhea. Then I would immediately be fine again. The "flare ups" never lasted long enough that I needed to take medicine, and it happened to few and far inbetween that I didn't truly care.

      My family has a history of gallstones on my dad's side of the family (his mother, his sister and now him), my sister believes she's had GB attacks in the past though they've never found stones, so I tend to lean towards GB. But I don't know if disfunctioning GB is related to family history of stones at all.

      I go back to my GI doctor tomorrow morning for a "follow up" from the appointment I had a month ago. We'll see what she says.

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