#vivonex

The last day of my life was sometime in February, 2013 the day before I was first diagnosed with Crohn’s disease, a progressive and incurable automimmune disease that targets the digestive tract.  As many people with Crohn’s probably know, and as none of us is allowed to think or say out loud, your life is essentially over once you get a Crohn’s diagnosis.  If not from the disease itself then from the treatments.

The disease itself is absolutely horrific and I saw it in my doctor’s eyes when she first broke the news and many times thereafter.  The first doctor in the practice to meet with me, right after diagnosing me said, “You need to get insurance immediately, if not sooner.”  I naively asked if that was because most Crohn’s patients needed surgery; she said no.  I didn’t understand what she meant but I was at the very beginning of my Crohn’s journey and just made a note of it.  I could tell that something was seriously wrong and about to get worse.  I mean, obviously.  If surgery and even repeated surgeries isn’t the worst thing in my future as a Crohn’s patient then what is?  I was already queasy from the Crohn’s related nausea but what she was saying, and not saying, unsettled me.

The second doctor in the practice to meet with me said, “You are an attorney, you are educated, intelligent and have research skills.  You should research this disease and all the treatments available to you.”  I didn’t know what he meant. After meeting with him for several follow-up appointments, when we had developed what I felt was a mutual professional respect, I considered telling him I would be at Starbucks later that evening if there was something he needed to tell me away from the office and away from prying eyes.  What did he mean and why couldn’t he just tell me about all the available treatments himself?  At the time, the research I had done indicated that the conventional treatments for Crohn’s don’t work much; that Crohn’s patients have an extremely low quality of life; and the best “alternative” treatment available was a so-called elemental diet, an enteric feed called Vivonex, a sickly looking yellow fluid that’s meant to be taken through a feeding tube but you can drink it straight if you can stomach it.  I bought several months’ worth at about a thousand dollars a month and tried my best.  It didn’t work.  And despite also taking the prescribed treatments including Pentasa, Entocort and Prednisone, I was getting steadily worse.

I was reading online Crohn’s forums and reading about patients who had been living with Crohn’s disease for decades, as well as the recently diagnosed, and the absolute hell they had been going through with medications, procedures and repeated surgeries that did nothing but make them feel worse in the end.  No pun intended.  Some people found success with different treatments only to find their effectiveness short-lived.  Normally I would concede that those patients who were satisfied with their treatments and with their quality of life would be out living their lives and not commiserating on an online forum, and therefore I would take the published accounts with a grain of salt.  But in this case I noticed a pattern: many of the patients writing on the forums had been getting some relief from their treatments for a time but the treatments eventually failed.  What I was reading were both the treatment failures and the treatment successes in that sense.  Where are the Crohn’s patients who respond well to the treatments forever and don’t feel traumatized, stigmatized, disabled, or have other reasons to publicly talk about it?  I have no idea.  I have never met one.  I understand that they are probably out there somewhere but the truth is, even they won’t know what group they themselves fall into until they die.  Just because they are getting relief from their symptoms right now means nothing.

Eventually, I fell down the rabbit hole of researching medical cannabis for various conditions, including Crohn’s.  Is this what my second doctor had been referring to when he told me to research what was out there?  Cannabis was still illegal in my home state, not to mention outside the “official” accepted standard of care for Crohn’s, so that could’ve easily been what he meant and he just couldn’t legally say it. After reading and viewing hundreds of blog posts, medical journal articles, and YouTube videos on cannabis and Crohn’s, I suspected it was.  I had been treating with prescription medications for 2 years and was feeling my health, energy and life slipping away.  I was getting worse and at a terrifying pace.  I had no idea what was in store for me and I had no idea it was even possible to be that sick — I had always assumed that there was some threshold of pain and suffering, some Agony Index at the pinnacle of which you would simply die.  Essentially, I had always assumed that something this relentlessly painful would be fatal.  I started to panic as I understood that it just might be possible to be this sick, or even sicker, indefinitely, and that at some point I would probably lose my mind from the pain.  What happened next seems a blur.

My Pentasa wasn’t working anymore and the next course of action was to get on an infusion treatment that basically gives you AIDS: it destroys your immune system.  You get all the opportunistic infections of an AIDS patient including thrush, pneumonia, and even cancer as so-called side-effects of the medication. Meanwhile, Crohn’s itself is not curable and is progressive, meaning that it never goes away and only gets worse.  So then, looking down that road, you have Crohn’s, AIDS, and cancer to contend with and all that comes with each condition including more treatment, more side-effects and more opportunities for medical accidents, treatment failures and complications up to and including death.  I suspect that actor Shannen Doherty took this treatment for her well-known case of Crohn’s and that the Crohn’s medication caused her cancer in the end.  I suspect the same thing happened to my fitness trainer who had an autoimmune disease and ended up with cancer too.  I began to see my own future.  And I was so desperate to have even a temporary respite from the agony of Crohn’s I was going to take the medication anyway.  I was tested for tuberculosis — a precondition to having your immune system decimated because any active infection at that point can kill you — and I was going to start the infusion treatments as soon as possible.  Everything up to this point had been either free samples of medication or self-pay and I was prepared to pay additional thousands of dollars if it meant I would find some relief — the infusions alone were to be something like $4,000 each, to be repeated every 8 weeks.

In the meantime, I had taken the first doctor’s advice and applied for health insurance.  Because I had not worked as an attorney for about 4 years by then and had started a small business that was compatible with my new and worsening disability I applied as an uninsured person through Obamacare which placed me on Medicaid due to my small income.   The first thing Medicaid did was deny the Crohn’s medicine I was already on (Pentasa, which didn’t work much anyway if at all) and then my doctors fired me because they didn’t take Medicaid.  Without a doctor, any plans for the infusions were put on indefinite hold.  At that point, because I had practiced benefits and anti-poverty law for years, I knew where I was headed: in and out of the hospital and fighting with Medicaid to approve maddeningly ineffective medicines and treatments and brutal, gravely dangerous ones, all of whose known side effects could be just as bad as if not worse than the disease itself, and where even a favorable resolution to the Medicaid issue would easily take months if not years to achieve.  All the while suffering with the hellish, unrelenting agony of un- and undertreated Crohn’s.  I knew what I had to do.

I packed one suitcase and made a reservation at a vacation rental property in a cannabis-friendly state where I had planned to stay for 2 months and treat with medical cannabis.  I had hoped that I would get better and go home but it’s now been 3 years and I am still here.  I have gotten significant pain relief and improvement in my Crohn’s symptoms which I consider a hard-won and unlikely personal success.   Nothing can diminish that and I am immensely grateful to have gotten some relief.  But now I have spent my life savings, liquidated my assets, and maxed out and destroyed my credit, and although I have worked on my small business as best I could, almost everything is gone. I will soon be facing homelessness as a chronically ill cannabis refugee.  Because I have refused Western medical treatments for my illness I am not eligible for disability-based benefits.  My attempt to “help myself” financially by starting a small business has complicated my finances such that I am not eligible for any need-based benefits at all, or anytime soon.

Not knowing what else to do, and wishing to document my experiences, I have started this blog.  It is intended to be a very short-term project where I will record my insights and what I have learned from my relatively new station as a chronically ill person in the context of Western patriarchal and capitalist medicine, and my resistance to it.  I hope to absolutely excoriate Western medicine’s treatment of Crohn’s and other serious illness; to rail against the disability- and income-based benefits structure where so many sick, injured and otherwise vulnerable people fall through the cracks; to describe my treatment successes and failures, including my treatment with medical marijuana (also known as medical cannabis, medical pot, or MMJ); to describe the crushing disappointment and sorrow I have experienced through family and friends’ failure or willful refusal to really “get” what Crohn’s is all about, what Crohn’s patients go through and how disabling Crohn’s can be; and hopefully to find a solution to the untenable situation in which I currently find myself.  At the very least, I will find some comfort knowing that I have spoken the truth aloud about my experience as a Crohn’s patient disaffected with Western patriarchal and capitalist medicine; as a cannabis refugee; and as an attorney who in the end, may be unable to help even myself successfully navigate the social, legal and financial hardships of a serious chronic illness.