How to get doctors to take you seriously?

[Cheri70]

I switched to my current GI because my last GI didn't seem to take me seriously. At the time I was crying almost daily due to pain. The new GI seemed excited to help me, but that quickly faded once a colonoscopy and small bowel series came back fairly normal.

History: 37 yr old female, typically healthy/healthy weight, etc. Recurring abdominal pain with a gallbladder removal in Nov 07 due to a non functioning gallbladder (no stones). They had thought that was the cause of my on/off years of pain. The pain became constant after removal. I've had weight loss (40 lbs total so far, still losing). The pain is now intermittent again, only every 2-3 weeks as of 3 months ago, but now it is followed by left upper quadrant pain. This is a pressure pain, as if someone is pressing into my ribs. This lasts about a week then fades. I have had 2-3 bouts of stabbing pain (fall to my knees pain) in that area with the pressure pain following.  I get severe bouts of nausea, but they are not associated with the pain.

I had stopped seeing doctors months ago due to lack of care. After a bad bout of cramps and LUQ pain a couple of weeks ago I started up again. The GI nurse was rude and said the doctor did not have any office hours available and is out of office all summer. I asked what I was supposed to do! She didn't like that I might switch doctors so she said he ordered a ct scan and blood work, which was done early Friday morning. I thought for sure the CT scan would show something!

I called her today and she said to HER it looked OK but the doctor has not read it yet. I asked when I would speak to him and she said typically I would not. Uh what? So I asked if I could, she said she would put in a request. That is insane.

I googled the blood work they did and none of it included pancreatic enzymes, etc. They don't seem to be considering my biliary system or pancreas when it seems clear that needs to be checked out.

What am I doing wrong here in regards to getting adequate health care? I just feel like I am running in circles. I know that this is not in my head and something is wrong.

PS when I mentioned to her that I was having diarrhea since the CT scan with contrast she said it could be because I had a moderate amount of stool and my body was responding to that. Forget the fact that it's noted the contrast can make you have diarrhea for a couple days after drinking it on many web sites. I have only had BMs 2-3x a week my entire life and I rarely, if ever, have diarrhea. I am not confident in her suggestions and I despise her attitude.. however, when I DID see the doctor he was very nice and did seem concerned (6 months ago). I hate switching doctors and I have a fear of coming across as a hypochondriac - but this has to stop, I have to find an answer.

[Cheri70]

I got a copy of my CT scan, which doesn't show much!

• 2 small peripheral hepatic cysts
• linear hypodensity central liver near gallbladder fossa, may represent postoperative change
• 1cm cyst right kidney
• cyst superior pole left kidney

All tiny things which were almost all on the first CT scan I had prior to my gallbladder removal.

I had an MRCP on Saturday... we'll see how that goes.

[mrwjd]

Great!  I'm glad for you.

Let us know how it goes, will you?

[Cheri70]

Amazingly, my GI doctor called me.  I really didn't expect to ever hear from him.  The nurse called and "patched me through" and it was a horrible connection!  

He asked about symptoms and had not seen the CT scan (unlike his nurse informed me).  He has ordered an MRCP for Saturday AM after hearing my symptoms.  I just hope it will show something if I am not symptomatic (which I am not right now).

[mrwjd]

I feel so badly for you.  What you are going through is awful, and unfortunately not rare.

I have found that doctors can't deal with "functional pain," that is, pain resulting from organs having spasms or doing something wrong but not showing lesions that they can find.  Their typical response is to conclude that (a) you are overreacting to normal discomfort; (b) you are a hypochondriac; and or (c) you have a hysterical personality, which produces or imagines symptoms.  When intolerable pain finally drives you to the ER, you are likely to be put into a corner and told they'll get to you after they take care of the "sick" patients.  

In grad school in psychology, we rotated through the medical school, where we were exposed to a "psychological" concept learned by medical students:  the "4F patient."  The idea is that if you are presented with a patient whose diagnosis is not immediately obvious and that patient is "female, over 40, fat, and flatulent," your first hypothesis is that she is a hypochondriac and not a legitimately ill patient.  I don't have to tell you how hard it is to overcome that hypothesis.  (My daughter who just graduated med school says they were not taught this, so maybe the younger doctors aren't being encouraged as much in this bias.)

From my life:  for about 35 years, I have had esophagitis with severe esophageal spasms.  For ten years or more, every medical person I saw was immediately certain I was just having some heartburn, which I was exaggerating in a hypochondriacal or hysterical manner.

One day twenty years ago, on an airplane preparing to land (and unable to change position, even), the spasms began and escalated.  I checked my carotid artery while my heartbeat became slower and slower, and finally stopped.  When I came to, a doctor with stethoscope was standing over me--he'd been the passenger immediately across the aisle--and confirmed that my heart had been stopped and I had seized.  (The good thing about functional pain is that it generally disappears with unconsciousness, and after I went "out," my heart spontaneously picked up the beat again.)  So at least I knew then what was going on, for what it's been worth.

The other medically observed instance was in an ambulance.  The spasms were intolerable...and then I came to with the EMTs bent over me and the ekg monitor, with one of them at the monitor saying something like, oh, there it [the heartbeat] is again.  The machine must have malfunctioned.  I said, no, it didn't, it's happened before, make sure that strip isn't lost and gets to the doctor because it's the first time it's been recorded.  They said, oh, no, it was a machine malfunction, I said, I don't care, I want the doctor to have it, no matter what.  Here's a big surprise:  it disappeared, and no one ever saw it again.  

There's more, including a surgical situation where my prior careful and insistent explanation of the problem was recorded nowhere in the medical record and only my kids being there and explaining to medical staff what was happening (and staff believing them, bless their hearts) saved my life.  But that's a picture of diagnosis of anything that isn't immediately obvious:  even if you can get the evidence to them, they are likely to disregard it or throw it away because it doesn't fit preconceived notions.

Wish I had an answer for you.  Everything I know to do to manage my situation has  been discovered by me, over many years, with a great deal of pain and risk and trial and error.  Maybe if you went directly to a research doctor at a university...?

Good luck.  If you have a minute, will you let me know sometime how your quest is going?  

[Cheri70]

The nurse called me today, she said the doctor is suggesting this is due to constipation and recommends taking some over the counter stuff to clean out (I've had diarrhea since the CT scan on Friday - so 4 days!).  I asked her if constipation caused weight loss.  She stammered out a "no, not typically", so I reminded her that I've lost 40 lbs in the last few months.  She then says that I should have an office visit.  That's funny because she told me last week that I couldn't see the doctor.  However she added he won't be available until August for a visit.  

Now I have been constipated before.  About 5 months ago I was miserable and I am sure it was caused by that.  I was taking fiber and miralax which was making it worse, I think I was taking too much fiber.  I stopped taking those and I got better, with the exception of the cramping every few weeks leaving me with the LUQ pain.  Again, all my life I've had BMs 2-3x/week with no problems and that is the schedule I am on now.  I don't get diarrhea unless I drink something like - CT contrast.  I'm positive I am not constipated.

The doctor will TRY to call me, but she can't guarantee that he will.

[CalGal]

IMO, going to the ER is going to be a waste of time. They'll probably feed you a GI cocktail - which will be pleasant and probably cut the pain - but they'll probably tell you that it's acid reflux (your stomach is on the left side, too, remember?), feed you a PPI and tell you to see your doc. They typically won't do labs for liver or pancreas unless you raise hell (and then you'll truly be labeled - only not in a nice way!). They say they'll do blood work, and you'll get the report back that they did a CBC and not much more.

I'm really not kidding. I see that time and time again, and it makes my blood boil.

Keep in mind that in many conditions there's no one-to-one correlation between eating a food and an instant (or within several hours) reaction. Even with things like celiac disease. Reactions can come days later. The body is an amazing organism and can compensate admirably over and over again until you finally exceed it's capacity. It's only then that all hell breaks loose and by that time the whole system is so irritated that nothing a person does helps.

Oh, by the way, if you were tested for celiac disease via blood test (or actually by endoscopy/biopsy) the results can be so wrong so often that it's not funny. There's a very good fecal antibody test (enterolab.com) that is wonderful and picks up MANY of those who lived with symptoms for years, were told they didn't have gluten problems after testing (blood/biopsy), and were totally miserable. Many of the celiac boards are now suggesting that if people want to double-check they use the fecal antibody test. Doc's don't believe in it - my husband's doc didn't and boy was he wrong.

[Cheri70]

What a great response.

I have followed a low fat diet and recently realized it wasn't necessarily fatty food that triggers it, and maybe not food at all.  I had thought certain things triggered so the day before my CT scan I ate one of the foods and nothing.  Maybe it slowly gets bad then one slightly fatty thing triggers the spasms?  I'm not sure but I have been careful for months on what I eat. (btw I have been tested for celiac and it's negative)

I had a CT scan before they removed my gallbladder and did see the results.  It read "small low-density abnormality seen at both the right and left lobe of the liver, too small to characterize"
My GP wanted to see more testing on that, but the GI has done nothing.  So yes, I want to see the new CT results also!

I've been considering going to the ER next time I get the upper left pain again.  I have avoided this because it is VERY expensive.  I don't know what else to do though, and the only way I can get labs done that quickly is via the ER.

Thanks again for the response.  My husband and I are very angry that I am being treated like this, especially since I've gone my whole life up until now free of illness.

[CalGal]

It can be extremely difficult. They tend to rely on their test results so much that many of them can't seem to understand that the tests aren't 100% perfect. And if you don't fit into a category, they'll probably label you as 'it's all in her head.'

Are you following a low fat diet? Many people can't digest fats as they did before the GB surgery, unfortuantely. So if you haven't tried that yet - and for a number of weeks - it's something you need to try.

The next thing to do is gather ALL the written reports - doc's, biopsy, etc - and read them. You'd be surprised at just how often small things are overlooked - or are just not told to a patient. I'm not sure why that happens, but it often seems as if doc's believe that if they tell a patient 'everything' is normal, somehow everything magically will be. But it doesn't work that way. It just makes the poor person who's suffering wonder why 'X' is happening to them and not to anyone else - when in fact it's probably happening to thousands of people. That's what some of these boards brings to light.

Get the records. If you don't understand them, ask someone to help you read through them. There are enough people with good, sound knowledge who can give you a hand with it. It won't be diagnostic, but it's a place to start.

Another thing to do is to keep a food diary. I know that sounds trite, but it's not. And those diary entries can sometimes point out a pattern you wouldn't see any other way.

If you want to get your liver and pancreatic enzymes checked - and you should - call that nurse back (and hold your temper in check although she sounds like a PITA) and get a script to be able to get the labs done. BUT wait until you have some really rotten pain (sorry to say that, but.....) and then get the labs done within 24 hours. That would be my best suggestion since the pain could indicate spasms of the biliary system which would back up the bile/pancreatic fluids and result in a spill over into the blood within 24 hours. Without that spill, the labs are probably going to be normal - unless the pain you're currently having is due to pancreatic issues. So it may be a toss-up as to when you want to do the labs.

In addition to a low-fat diet ( which would be very beneficial for both you biliary system and your pancreas), google 'lnape and calcium.' There's a method of using a certain form of calcium in certain ways that has helped some with diarrhea problems. It doesn't work for everyone, but it might be worth a try. It shouldn't be used if you're prone to kidney stones or have parathyroid problems, however.