GallbladderFilterites: Should I have my gall bladder removed? Write to Dr. Oz? Storm the NIH?
First lemme say: I have already read previous MeFi threads
- about not having a gallbladder and still having symptoms
- about having a more extreme gallbladder situation than my own
- life after surgery
I have posted several times over the past three years - and trust me when I say I have had pretty near every g.i. test there is for my peculiar and slowly life-draining stomach problem - but it is only recently that the gall bladder as culprit surfaced. Last week, at my wits end, I convinced a new gi doc to get me a HIDA+CCK scan, one of the few tests left I had not done, and even he was surprised to find the ejection fraction at 19%
. Everything else about the scan seemed 'normal', and my previous ultrasound showed no stones. He said "Hm.... I think
that could be it."
He was surprised because my problem presents as extreme bloating and pressure in my stomach, and more belchiness in general, with an occasional increase in throat clearing. That's it. It started right when I got a flu which lasted a whopping 2 days, approximately 3 years ago. It hasn't gone away since. I have these symptoms 24/7, whether I eat anything or nothing, or change my diet, or don't, or fast, or don't. I don't have any of the typical gallbladder 'attack' symptoms, no upper right quadrant pain, no urge to vomit or nausea. Not once! Although I can no longer lie on my stomach, it starts to hurt after a few minutes. It pretty much always feels like somebody took a pillowcase of tennis balls to it, and then the soreness that would likely result a while after that.
I already have Hashimoto's, IBS, & celiac, so I eat no gluten, yeast, or dairy, religiously, and only occasionally eat corn containing products or fruit sugars. I don't drink alcohol or smoke.
I have tried most of the ppi's and holisticky things (yoga, tai chi, various proven herbal things, ginger/turmeric, slippery elm powder, mastic gum, DGL, etc, oral immunoglobulins, the fancy super expensive probiotics as well as antibiotics, massage, acupuncture, biofeedback, raising the head of my bed at night, ppi & H2 antagonist combo, multivitamins, D, B12, Metanx, l-glutamine, and the latest suggestion I had from Germany, Iberogast. The Iberogast does seem to calm my lower gi down further, so that's nice.).
Add to that increasing depression and sleep disturbance which I have been unable to successfully treat with a variety of different models & kinds of cpap machines with 3 different sleep doctors and uncertainty about sleep test data (they all said "you have mild apnea, but it's not 100% clear from the polysomnograph"), crappy allergies (although they are treated well), unwanted weight loss, and you have a recipe for slowly progressing into a zombified, unable-to-work state (although I still manage to work).
I suspect getting this latest malady triggered the depression and made sleeping worse than it may have already been, and the fact that it is difficult to do a lot of the things I once loved to do (dance, various regular exercise like yoga and tai chi, swimming, regular singing) because the pressure makes breathing more difficult.
I've tried several neuro meds that I could not tolerate for long before I had to stop (I know that some of them require that initial waiting period for some side effects to lessen and the benefit to be had, if there's going to be any), because it's known that if one has something like
- "post-viral vagal neuropathy"
- "silent reflux"
- "functional/non-ulcer dyspepsia"
neuro meds may help.
I have not given up on the neuro meds entirely because I'm pretty sure I'm depressed enough at this point that I will not dig myself out of this hole without them, especially considering I can't exercise much or sleep right.
I have been to the Mayo clinic in AZ, as well as seen some specialist guys in NY, and were all uncertain. They did a ton of bloodwork though and found little of note. My ferritin was low for a while but then seemed to go back up on its own, better even, than when I started taking iron supplements, initially.
All that's left I know I haven't tried includes
- 1 or 2 brands of PPI's
- very high-er doses of PPI's (if you don't count Dexilant 60mg as 'high')
- prokinetic meds like Reglan
- esophageal manometry to test for some other motility dysfunction
- extremely regular meditation (I'm working on this, but no amount of meditation is going to fix a truly busted gallbladder)
Somebody around here suggested the NIH Undiagnosed Diseases Program
but they stopped taking new applicants as of July 1, 2011 - about two days before I found out it existed.
I guess my point to all this is: the ejection fraction is considered below normal for a healthy gallbladder. Yet I do not present the typical symptoms for a gallbladder failure. I already have IBS-D, although the D does not appear all nasty and yellowish like people often describe a failing gall bladder to make happen, and I have managed it for quite a while. I haven't ever had what's considered a gallbladder 'attack', and no sign of stones. I realize this does not mean that it is still 'ok' - but once it's out, I can't put it back.
The statistics I can find online appear to indicate that about 75-80% of people who have their gallbladders removed every year have either an improvement, or no change. What concerns me is the other 15-20% of people who appear to get worse, and that these are odds I probably have no chance of bucking should I decide to have it out.
Naturally the surgeon I just saw for a consult yesterday told me that his anecdata of 10 years of gallbladder surgeries shows him that in his experience, he personally has only observed the 75-80% I just mentioned... it is clear though there are people who have suffered adverse effects from gallbladder removal just from the other MeFi threads. Obviously in some cases, people don't have a choice, because they are in extreme pain all the time and can't deal.
While I have no pain at present or attacks, my quality of life has suffered tremendously since this began... my urge to go out is nil, I rarely call any of my friends to do anything. Obviously I'm depressed. This doesn't help me make a decision as to what to do next, though.
Help me Obi-mefites you're... well you're not my only hope and YANMD, but I'm looking for something to point me where to go next.
A zillion thanks.