The Ghost of Gallstones Past

So a while back, I had gallstones.  This meant suffering semi-random gall bladder attacks, which left me pale and writhing on the ground in pain.

After several ER visits and doctor examinations, my doctor recommended surgery.

Naturally, I wanted to see what else I could try before it came to actually being cut open and getting my gall bladder removed.

There was a popular remedy I’d seen online, involving fasting and drinking epsom salts to clean you out, then drinking olive oil.  So I gave it a shot.

It was horrible.  Drinking olive oil straight is dis-gus-ting, so bad that even today, years later, the smell makes me a little queasy.  It also didn’t help at all.  Ultrasounds before and after showed, if anything, more gallstones after the olive oil.  I ended up getting the surgery, which was meant to be outpatient but due to a complication ended up being 3 or 4 days in the hospital.

Flash forward to today – the surgery has been effective, and life without a gall bladder is largely the same as before I had it out.  If you’re curious, the only real change is if I have a fatty meal, I’ll have to go to the bathroom 30-40 minutes later.

My mom just forwarded me a quote she found, thanks to Google Books, from Ellingwood’s Therapeutist, an eclectic medical journal from 1914:

If there is an infection of the gall bladder with gallstones, give an ounce of olive oil twice daily, which has a tendency to liberate the stones. This remedy was first suggested by Dr. Horatio Firth of Brooklyn, N. Y., and is on record.

Dr. Horatio Firth is my great-great-grandfather, on my mother’s side.  So it turns out that drinking olive oil, the popular remedy I found on the internet, was actually invented or at least popularized by my direct ancestor.

Small space-time continuum, eh?

p.s. Thanks for nothing, great-great-gramps!  Bleh.

organ grinder

I went in to the doctor’s yesterday, to meet with the surgeon. Sarah came with me, to rough them up with her nurse-fu if they gave me any trouble. The surgeon was nice though, and was also curious to see if the flush did anything, so agreed to set up an ultrasound to see.

I scheduled an ultrasound for next week, and the surgery is scheduled for next month.
If the ultrasound shows that the stones were cleared by that herbal flush, then I can cancel the surgery.
If not, then I’ll go in for surgery on Oct. 10th, the operation takes about an hour, and then I’d go home and spend the weekend resting and recuperating.

While I was there, I requested copies of my ultrasounds (which the US technician falsely claimed I wasn’t allowed to have) and I swung by and picked them up this morning.

Here are the “before” ultrasounds, taken about a month ago (note, this is not “before” and “after”, just two different cross-section views from “before” – the “after” ultrasound hasn’t happened yet):

And here are the same images, where I’ve highlighted the important bits:

So a fair number of stones, but not a huge amount – some people have their gall bladder literally packed completely full of stones.

I give the pain a 9 out of 10

Last night, I got back from Sarah’s. Traffic had been crappy on 90, so it took me a half-hour longer than usual. I had a bowl of ceral and started installing the iPhone SDK on my mac mini, so I can take it with me to WA.

Adam came downstairs and said he’d been watching movies all weekend, he got a Hitchcock box set.

We decided to watch North by Northwest.

We got about 30 minutes in, and all of a sudden my abdomen started to cramp. I shifted around on the couch, but then the pain hit. Not mild pain, but 9/10 pain. My face was suddenly wet with sweat, and I could barely breathe or speak the pain was so great.

I took a couple oxycodone, I’d never timed them to see how long they take to kick in, though.

I IM’d Sarah to distract myself from the pain. She pointed out it could be a blocked duct, and that I should probably go to the ER, since a blocked duct can cause complications.

I waited a few more minutes, but the pills weren’t kicking in. So I asked Adam to drive me to the ER.

He dropped me off and told me to call when I was ready to be picked up – usually trips to the ER are 6-hour affairs.

Since I was obviously in horrible pain, and barely able to speak, they got me a bed quickly.

A doctor examined me and a nurse put an IV in my arm and drew some blood for labs.

Finally the oxycodone began to kick in and the pain subsided, I could breathe and speak normally again.

A doctor came in with a student doctor in tow, she did an ultrasound while the student watched. She was nice, I asked lots of questions, and she turned the ultrasound so I could see. It looked like there was a small pile of gallstones at the bottom of my gallbladder. She couldn’t find any obstruction.

An RN came by and adjusted my bed for me and got me a warm blanket. I texted Sarah as I lay waiting for the lab results, sent a picture to my blog, and finally took a little nap.

The labs came back. A couple numbers were elevated, but not indicative of a block or infection. So they gave me a new prescription for oxycodone and sent me home.

I called Adam to pick me up and walked out in front of the entrance to wait.

Suddenly, I felt lightheaded, and nauseous. My vision dimmed, and I could feel I was passing out. I stumbled back inside and sat down in the waiting room, and took deep breaths. I figured perhaps it was a mix of getting up after lying down so long, the pain meds, and dehydration.

Adam arrived and drove me home.

I wasn’t really able to fall asleep for long, instead slept in bursts throughout the night.

This morning I woke up feeling shaky and nauseous. I half-slept. Then, I got that overactive salivary gland that means one thing: vomit is coming.

I threw up, though not a lot.

Then a half-hour later, just now, I threw up a lot. Everything left in me, I hope. Now my throat is burn-y from the acid. Bleh.

And now, the other shoe

My doctor finally called me back this morning. No actual apology for taking so long, just a mention that he was having issues with certain reports not showing in his inbox or something.

He says because my gallbladder walls are thickened, it’s a sign of chronic cholecystitis, and therefore, as I feared, he wants me to have surgery to remove my gallbladder.

I asked about the possibility that antibiotics might clear up my constant low-grade fever. He said “no.”
No explanation of why, no explanation of what is causing the fever, just “no.”

He said he wanted to make an appointment with a surgeon to get an evaluation. I didn’t know what that meant, so I stupidly just said yes. I was pretty much just crushed mentally by the mention of surgery.

I wanted to ask about alternatives to surgery, but the way he blew off my question about antibiotics, I figured he would just laugh at me.

And that was it. A quick 3-minute call from my doctor. No real answers, just, as I feared, sentencing.

I want to get a second opinion, but I have no idea how.

Basically, I’m fucked.

Yeah, I know, right now, you are probably saying “oh, you’re just being whiny and melodramatic. It’s routine surgery with very low risk. I know several people who had it and they are fine. At least there’s nothing *seriously* wrong with you. Stop being such a baby.”

Which is probably what the doctor would say, since they hide the actual potential downsides. It is true that the surgery itself is fairly minor and usually is outpatient, and with a good surgeon usually has no complications. What they don’t tell you about is what happens the REST of your life, AFTER the surgery.

The truth that they won’t tell you is that around 20% of people that have their gall bladder removed suffer digestive problems the rest of their lives. Some have constant diarrhea so bad they never leave the house. Many can no longer handle any fat, spicy food, alcohol, oils, and certain other foods without severe symptoms like bloating, pain, or uncontrolled diarrhea.

Doctors brush that off as inconsequential, since it’s a non-life-threatening issue, but THOSE ARE THE SAME SYMPTOMS AS CHRONIC CHOLECYSTITIS! The “cure” could basically give the same symptoms as the “disease”, only MORE SO!

Plus some studies show an increased risk of pancreatitis and colon cancer after gallbladder removal.

So yeah, right now I’m feeling pretty doomed.

I’m feeling angry, helpless, and stupid.

No one has really given me ANY info on what is going on, either.

Why did one or two meals with high-fat content cause my gall badder to switch from non-symptomatic to permanently symptomatic? If it was from the fat, wouldn’t it have returned to normal after I returned to my normal fairly low-fat diet?

I am not obese, have a fairly high-fiber, low-fat diet, and have low cholesterol. Yet despite that, I developed gallstones and my gallbladder is apparently failing. Why? What did I do wrong?

I have a constant (or constantly recurring) fever. Why? Why will antibiotics not help?

A lot of people have pointed out that I was stupid for thinking I could be healthy, since death is inevitable and it’s impossible to not have *something* wrong with you. Or that I caused my gallstones by losing weight, or by not eating enough fat. Yeah, way to cheer me up, by telling me that everything I do is wrong, and it doesn’t matter since I will just die pretty soon anyway.

Still no info

Called my doctor’s office, he still hasn’t gotten around to looking at my ultrasound results.
The receptionist did say that it listed
* thickened gallbladder wall
* gall stones

Which is pretty much what I already knew. The thickened wall is probably a sign of infection, which is why I’ve had a fever for the last few weeks, and soreness in that area. Maybe there was more on the results, but that’s all the receptionist mentioned.

Interestingly, I found this on IntelliHealth (

Acute cholecystitis usually requires hospitalization. You need antibiotics given intravenously (into a vein) to treat infection and medications to control symptoms of nausea and abdominal pain. Once your pain lessens or goes away, there are no signs of infection, and you are able to drink and eat, you will be able to go home to continue your recovery. Alternatively, your doctor may wish you to stay in the hospital until you have surgery to remove your gallbladder.

Which suggests to me that if I don’t have a gall stone blocking the duct, all I need is some antibiotics. Which is pretty much a no-brainer, since I’ve had a fever for a week. It sounds like doctors will try to push for removal, since it’s the easy way for them to be sure of no recurrence, but I may not actually *need* surgery – it could be all I need is antibiotics and recovery time.

Too bad I don’t have any antibiotics left, a while back I was prescribed some for something… maybe when I had my wisdom teeth out? But I used em all up…

Kind of annoying, if they’d given me antibiotics when I was in the ER, or if my doctor had prescribed some, I could potentially have been all better by now. Instead, the ER just pointed out that my white count was up, and my doctor just noted that I had a fever.

So I’m feeling sort of optimistic… except anytime I’m feeling good, I can just think about trying to get medical records to bring me down…

When I called, I requested my medical records. The receptionist said I needed to sign a release, which I did in the past, but they only applied it to the one report they sent me at the time. I asked if there was a way I could sign a generic release, so I wouldn’t have to sign one every time, but she was sort of vague about it.

Sounds like *maybe* I can, but I will still have to call and request each report, since they have no way of automatically sending me a copy of test results. Which gives them the upper hand, since I have to *know* about a report to ask for it – they might draw blood for two labs, but if I only know about one of them, I only know to request that one… or if I don’t know the name of the lab, only that blood was drawn, how can I request what I don’t know the name of?

Plus I asked them to request the ultrasound images from radiology, since when I asked the radiologist, she said they wouldn’t give them to me, I needed to have my doctor request them… well, guess what? The receptionist told me they couldn’t request them from radiology, that I have to request them from radiology myself. Which I already tried to do… arrrgh! They make this as hard as they can. It really makes me feel like I need a lawyer or a gun with me to get a copy of my own records.

I mean, come on! I have to sign a document saying that I allow them to release a document to myself???

The whole system reminds me strongly of Brazil. Which of course it should, because Brazil is about just that sort of system, run amuck…

Shock Trooper, after storming the house and arresting a woman’s husband: “This is your receipt for your husband… and this is my receipt for your receipt.”

Later when she tries to get her husband back, Sam helpfully tells her: “I assure you, Mrs. Buttle, the Ministry is very scrupulous about following up and eradicating any error. If you have any complaints which you’d like to make, I’d be more than happy to send you the appropriate forms. ”

So the receptionist was more than happy to send me the appropriate forms. I just have to wait for those, and also go to radiology to get the forms from them too. Except they are only open during normal business hours, during which time I’m at work, so I’d have to take time off work to go in. Except I’ve used up my sick days by having this trouble in the first place….

My theory about medical records

I called again to see if there was any info – there wasn’t. From her tone, the receptionist seemed annoyed that I called twice today, so I chickened out and didn’t ask for the data to be mailed to me. Next time, hopefully I won’t forget or chicken out.

I wish there was a way to have them ALWAYS send me a copy of my records, but of course they don’t have a way to do this.

Here is my theory

I think the prevailing attitudes around medical records are:

  • “The patient wants these records so they can go over them with a fine-tooth comb and sue us for any irregularity,” or
  • “The patient is a hypochondriac, and will just freak out over every piece of data, so they shouldn’t get a copy,” or
  • “The patient won’t understand these records, so there is no reason they should want a copy.”

Basically they seem to think that although a patient CAN ask for records, they shouldn’t WANT to, and if they do, there’s something wrong with them. That’s me: Mr. Wrong.

Blood is good(ish)…

I called my doctor’s office… I guess he hasn’t looked at the ultrasound results yet, but according to the receptionist, he did look at the blood lab and said my results looked better… which is kinda vague. He wants me to have another blood lab done in a month.

He seems concerned about me being slightly anemic. Having kept my own copies of my hemoglobin levels for the past year, I would say my levels are just naturally low, since it is usually around 13 (the normal range is 14-18… or 13.5-16.5… depending on who you ask). Worst case, I should take an iron supplement (I do take a multivitamin which has iron, but generally don’t eat red meat).

This is one reason I like to always get copies of my medical records, medicine isn’t a centralized body, so hospitals don’t necessarily talk to one other. I’ve given blood with the Red Cross and with MetroWest Medical, and had labs done by the ER and my doctor. Each time I’ve gotten a copy of the data, so I have several data points, while each medical institution only has one or two.

The mild anemia isn’t really concerning to me, what I want to know is what’s going on with my gall bladder, but of course that’s the data he hasn’t gotten to yet. Hopefully I’ll hear back soon, and next time I talk to them I’ll have them mail me a copy of the blood lab results, which I forgot to do just now. Oh, and see if I can get the a copy of both the ultrasound results AND the images as well. Hopefully I can get the image data in standard DICOM format. I want to see what my insides look like. =)

ultrasound, microinfo

I had an ultrasound today and had more blood drawn for labs.
No info though. Guess I’ll have to wait till next week to hear anything from my doctor.
I asked for copies of the ultrasound images so I could see what my insides looked like, but the radiologist said no. Boo. Apparently I can request that my doctor request a copy of the images, if he agrees to it. Doen’t sound very HIPAA-compliant to me. >=(

Meanwhile, I’m in a sort of limbo… not really stricken, but not really well.
I have a more or less constant low-grade fever and headaches, abdominal soreness, and at night I wake up with abdominal pain, which isn’t super-severe, but enough that I can’t fall asleep without taking an oxycodone.

I’m worried that the doctors might not schedule any sort of treatment until after I get back from my trip to Washington, so I will be feverish the whole time and not able to fully enjoy it.

Especially since I don’t have enough oxycodone to last that long, which could mean a lot of sleepless nights up tossing and turning in pain (apparently that’s when Gall Bladders do their thing, most gall bladder pain happens to people at night).

I’ve been looking forward to the trip for a while now, it would suck to have it spoiled by my stupid insides.