sod

i know it's spring, but nope, i'm not talking about dirt.

sod, aka sphincter of oddi dysfunction, is the most recent diagnosis i've been given for my abdominal ailments. those who know me well will attest to the fact that i have the unlucky misfortune of developing random medical problems...but this has to be one of the oddest. [no pun intended, of course. ;-) ] This wouldn’t necessarily be a bad thing, in and of itself, but the new GI I saw here (the last one went AWOL...so bizarre) doesn’t have the equipment (nor do any of the other docs/facilities around here) to do the serial manometry testing on my common bile duct (cbd) that is needed to prove the dysfunction and determine treatment.

Thursday, after learning all of this from the new GI, I called my GI in the large city in which I grew up. The city is not too terribly far from where I live now, and my parents still live there, so it seemed like returning to the GI who (a) knows my history, (b) i admire, and (c) has access to better/more/newer equipment than physicians in this area would be a logical next step. being the dedicated physician that she is (and yet another one of these amazing female docs that i'm afraid will burn out too early as a result), she called me that night at 9:30 pm from her office.

In speaking with her, however, I realized that being diagnosed with sod (and confirming the diagnosis) is more complex than I imagined or had been lead to believe by the GI doc here. She explained to me that, even in large metropolitan cities with major teaching hospitals such as the one with which she's affiliated, most docs/facilities don’t have the equipment for this procedure because it is not done often anymore. This has something to do with the fact that anesthesia and analgesics interfere with the function of the sphincter, such that the test has to be done under unusual conditions (<-- note that I didn't ask her to elaborate on this; my immediate ally mcbeal mental image of having a tube shoved down my throat while fully lucid frightened me into silence). So, basically, if this procedure is offered, it’s only performed at major medical school centers where it’s being used for clinical trials/exceptional cases/studies.

As a result, usually GIs go in "blind" (i.e. without the proof of elevated pressure in the cbd that clinches the diagnosis) and do a sphincterotomy. However, the risk of pancreatitis after the procedure and/or the need to have the procedure to repeated every few years is fairly high. Given these factors, the procedure is also not generally done in younger adults, since the risks increase over time. This makes me a bad candidate for an ercp with sphincterotomy, particularly without a proven diagnosis.

that evening, before this gi doc called me, I read some recent articles on PubMed to see if there were any new or alternative treatments available for sod. Some major medical centers have been experimenting with injection of botox into the sphincter, which prevents the sphincter from contracting and therefore reduces the pain-causing-pressure in the CBD. Of course, if this works, it has to be repeated every few months...but in my opinion, the possibility that it could work way outweighs the pain of the spasms. (I think there is only so much longer I can live on applesauce, rice, bananas, and toast before I go mad.... And the medications to treat the disorder, namely antispasmodics like levsin, are only so effective....)

She didn't know off hand whether anyone in the city is doing this procedure, so now I’m waiting to hear back from her as to whether anyone there is willing to shoot my sphincter up with botox. And my poor little sphincter doesn’t even have wrinkles yet! :-(

At one point, this GI doc, who is usually fairly upbeat (or at least on the optimistic side), asked me something to the effect of, "couldn't you get something that's treatable?!?" I know she meant it in kindness--she obviously does not like to see me suffer this way, particularly at such a (relatively) young age--but I was sobered. I'd never heard her sound quite so...well, almost hopeless, I guess.

It has taken me a while to digest all of this. Even after all I've been through medically, it didn't occur to me that this might be untreatable. I can't really wrap my brain around that notion yet--I'm simply not ready. A life of unpredictable, excruciating abdominal pain with intermittent bouts of diarrhea? No thank you.

Anyone know where I can get a refund for my body? I think mine may well be a lemon.