Tuesday, November 3, 2009

the reluctant forfeiting of my faith in medical appraisal

Alright, I'm done.  I will keep weaning off the prednisone, as laid out in the original "plan"; I will keep taking the purinethol until after my fifth remicade infusion, as dictated; and I will continue on the remicade infusions until my body has a negative reaction.  After that, I'm done.  I'm shifting therapeutic intervention to the shoulders of diet and supplements... and I'll use my doctor for more dire incidents... such as a referral to a nutritionist that my insurance will cover. 

If you have not already supposed, tonight's sardonic ramble is in honor of finally hearing from Dr. S after his month-long hiatus.  I had left a message requesting that Dr. S look over my now-two-week-old SBFT and interpret the next appropriate treatment steps for himself, knowing so well as he does my history (refresher).  The point of this request, my friends, was to hone in on taking steps forward in figuring out what exactly the intestinal obstacle is here, and how to work through/around it.  I thought this was fairly reasonable to ask.  Apparently, I am gravely mistaken about the directives of palliative medicine.  Apparently, it is much more efficient to take steps backward, as long as so doing is sure not to increase medical malpractice premiums.

Dr. S's nurse called.  He wants to know what my current symptoms are.  Oh good, so he's going to make the connection that I made two weeks ago (see refresher) and assure me that this is clearly not a job for prednisone anymore, that remicade should kick in in seven more weeks and that until then it is important to stay on the purinethol which is still doing at least something helpful? (it is).  Apparently, he is not.

The most pressing component to the last five weeks of my condition's development, in my renowned doctor's eye, was actually not the new stricture in my small bowel (which he didn't seem to think was there, btw), nor the constipation (which could easily be explained by the PPR cocktail), nor the continued abdominal pain (although significantly less frequent than four weeks ago... I did an ANOVA...).  No, no -- in fact, the silver bullet onto which my doctor has latched his clearly very personal ambitions for my recovery... is prune juice.  Indeed, the very prune juice I informed him that I have been drinking for the last two weeks despite the overwhelming sugar content, which causes problems of its own.
"Dr. S recommends that you increase the number of times a day you take the prune juice. Maybe try it 2-3 times a day and see what happens?"  The poor, tired voice on the other end of the line tries to redeem some thread of medical integrity from the doctor's message.

"Well, what happens when I drink 12oz a day instead of 6oz is that I induce a Throughput episode on a pain-scale rivaling the one that put me in the ER when this began 3.5 months ago."

"Ah... well, let's keep it at 6oz, then."

I would have been totally cool with this discussion had it included any pharmacologically relevant reassurances such as those posited in the preceding paragraphs.  It really doesn't take much to please me -- he didn't even need to give a correct diagnosis; all I needed to hear was some kind of medical reasoning or postulation and I would have been on cloud nine because he turned a scientific(esque) phrase.

And so, you see, I'm done.  Certainly not with Western medicine, because it gives me the tools to interpret my condition.  I'm just done taking my doctor seriously.

By the by, the Gastroenterology and Hematology department doesn't know of any nutritionists within the System who specialize in IBDs... but they suspect there are several who have IBDs patients all the time. ... Is there a reason they can't look into this for me?  I'm not sure I can think of one.
In all fairness, I am showing continual improvement in the pain and food-variety departments, it's just somewhat masked by all the other effects, some of which I can explain away and others I can't because, well, I'm not a gastroenterologist.


  1. I hear ya! I've been through a similar battle with doctor's over my son's autism and gi issues. Jenny McCarthy wrote a book titled "Mother Warriors", (for autism) which I found so appropriate since I felt battle worn after all of it. It's tough enough to battle an illness, let alone the medical community. But I keep preparing notebooks of medical literature I find relavent to my son and drop them off with the doctors at his visits. I think through osmosis it will slowely sink in.

  2. Battle worn... I think I've officially reached that stage. I've never actually brought medical literature to an appointment lest I offend my doctors, but it may be time to overcome that hump. Do what you must to get your questions answered. Thanks Mrs. Ed, and I hope you're right!

  3. yeah dude, you gotta kick their teeth in sometimes. my current lyme doc is the only one i actually trust enough not to be looking things up and wondering what the fuck he's doing. sounds like you need that.
    also, thinkin about you and we gotta chill soon
    love lizzy