Very long time with no post. I guess that summer in 2012 got busy enough, since I was finding lots of work as a freelance surveyor. But then, in January 2013, I got some very unpleasant news that left me not wanting to post, as my genuine feelings about it were too dark to want to share immediately.
I was diagnosed with a chronic degenerative liver condition, primary sclerosing cholangitis, which is associated with other digestive/autoimmune conditions such as ulcerative colitis (which I was diagnosed with in 2010), Crohn's disease, and others. Digestive diseases remain largely a mystery to modern medicine. Comparatively little is known about the human gut biome--it seems to come in three general forms, known as enterotypes, very loosely analogous to blood types--but all digestive disorders seem to be linked with, if not caused by, disturbances in the biome.
In my case, in 2007, as I was working aboard a filthy catamaran doing offshore sampling work, I came down with a series of painful skin infections, cellulitis produced by MRSA, which required aggressive antibiotics. Since I didn't take many probiotics while going through six or more courses that year, my digestive system was probably ravaged, allowing for my normal biome to be invaded by destructive interloping bacteria which have produced the conditions I deal with now. Of course, there's the possibility too that I already had lurking digestive and autoimmune conditions which were brought to light on the boat, in the form of my skin infections--a distinct possibility since as far as I know, I was the only person ever to react so badly to working on that floating toilet.
So the primary sclerosing cholangitis--PSC--is part of my package now. It's a frightening disease. It proceeds with the body building up fibrous blockages in the liver ducts--why is still a mystery, but research is zeroing in on an autoimmune response, almost if the body thinks it's allergic to its own liver. These blockages cause bile to back up within the liver, slowly destroying it. The median is 10 years after diagnosis for a person with it to need a liver transplant, or die for lack of a new liver. As of now there's no cure. PSC recurs in 35% of transplantees.
The only measures those of us--it's a very, very rare condition--can take are simple dietary measures. Above all, reduce fat intake. So now, though I still like cheese and the occasional pizza, no pepperoni, no sausage, no bacon, no butter, no peanut butter, nothing deep fried, no heavy cream or whole milk, and I avoid most processed and pretty much all fast foods. I take a few supplements like milk thistle (anecdotally good for the liver) and fish oil (correlated with longer prognosis in PSC).
In Europe, where regulatory wheels move somewhat more quickly, a few potential drug therapies for this condition, which mediate the body's autoimmune attack on the liver, are on the horizon. The small community of PSCers is watching those tests avidly. A doctor in California, Kenneth Cox, will shortly be concluding a double-blind trial evaluating the effectiveness of the antibiotic vancomycin in treating the disease. Most of the PSCers in the online group I'm part of are skeptical. That's a healthy attitude, but this is one of those cases where hope is stronger than skepticism in me. There's also the (much) more distant, but still conceivable, therapy of growing our own replacement livers in a laboratory, but that type of procedure is still barely in development.
So far I've had no symptoms, nearly two years after diagnosis. PSC generally involves episodic pain, if an infection develops within one of the blocked-off liver ducts, or if cancer develops there. The main symptom is jaundice and severe itching, caused by the bile trapped under the skin causing irritation. The itching is severe enough to cause insomnia, but I've read that UV therapy and acupuncture are effective remedies. So I do have those in mind should I need them.
But there is another, more traditional but possibly very worthwhile, treatment for both the colitis and possibly even the PSC: fecal microbiota transplant, or FMT...or, as I call it, a poop enema. It's a technique long known to animal husbanders helping farm animals with digestive disorders. Take the poop from a healthy animal, with its healthy gut microbiome, puree it, and squirt it right into the sick one. A number of years ago this technique was found to be almost 100% effective in treating a specific type of colitis--Clostridium difficile (C.diff) infection, a very nasty bug which resists all drugs (hence the "difficile" in the name) and kills if not treated. But a dose or two of healthy poop drives the bugs away, in nearly all cases. I'm not much of a conspiracy fantasist--I tend to roll my eyes, or do less polite things, when confronted with them--but I do believe that in this modern world of ours, many things are dictated by corporate profits. And since nobody makes much money off of recycled feces, it's not hard to understand why this procedure remains off to the side in treating a wider range of digestive ailments.
But there's a group in Australia, The Centre for Digestive Diseases, which researches exactly this topic, and explores FMT as a remedy not only for obvious candidates like ulcerative colitis and Crohn's (reasonably well established by now), but more exotic ailments like PSC (there's a small but hope-inspiring body of data that FMT helps), and even conditions like multiple sclerosis. It's immensely reassuring to know that hard science is being done on this, and that the results contribute to my hope. There's even a blog, by a gent living in Spain, which provides more anecdotal evidence and procedures.
Since mainline medicine is largely unaware of or skeptical about FMT, most folks who pursue it in the US do so at home. It's not illegal, but anyone trying it must be careful to use sterile enema equipment and rigorously cleaned pureeing equipment (i.e. a dedicated blender) and, above all, take feces only from a cleared donor. That is, a donor who's taken sufficient blood and stool tests to show that he or she has no dangerous conditions of his or her own to pass along. Once that's all done, and once you have your procedure, then go ahead and do it. Kate will serve as my donor, and I plan, once done with this job in Trinidad, to have my colonoscopy in December and then proceed with the FMT. Not your traditional Christmas gift, even in the sense of my wife giving me a big load of crap at the holidays, but hope and life are two pretty tremendous gifts.
No comments:
Post a Comment