I usually do not want to talk about having Crohn’s Disease. It is just a reality I have lived with for nine years, but never exactly dinner table discussion or an amusing anecdote shared with friends over drinks. It has been not just a major inconvenience in my life; it has altered its course significantly. The subject is emotionally difficult to explain. It’s personal. For lack of a better word, unpleasant.
I feel compelled to share now, although I don’t really want to, because a new studyhas proven smoked marijuana has a near 100% success rate in putting Crohn’s Disease into remission. I am sick of everyone making jokes about my involvement in the marijuana legalization movement; I’m sick of having to stay quiet about what I do around family or in public for fear or upsetting someone’s delicate sensibilities about “drugs” like marijuana. Let me tell you a thing or two about drugs, marijuana and Crohn’s Disease. It’s not a joke and it is not about “getting high” for me.
It is difficult to explain to people what Crohn’s is, because it involves the digestive system and people like to just think it is IBS. It is not IBS. It’s especially hard to explain because the causes are unknown; it is a chronic illness that was only given a name in 1932.
Genetic factors can signal its onset, but I had no such forewarning. My mom was adopted in the 1960s, when laws pertaining to adoption allowed all records, including medical, to remain locked—even fifty years after the laws have changed. Some digging produced some vague birth records showing a great-grandmother and some other distant biological relatives who died of their intestines exploding inside of them. My doctors urged me to find family members who had the illness so they could try to find patterns. We found my biological grandmother in Pennsylvania, but she wanted nothing to do with either me or my family and refused to provide any medical records.
I began fasting in middle school, but I didn’t start seriously starving myself to the point of illness until my sophomore year of high school. Not the point of this article, so I am not going in depth. Some people believe malnutrition can be a trigger for those who carry the gene. I think so, too. By my senior year I was in such terrible pain I would double over crying at night, unable to sleep. A nutritionist my doctor sent me to said it was my vegetarian diet and I needed more protein. I started puking everything I ate. The starving became involuntary.
The day I graduated high school all the other kids were lined up ready to process into the auditorium and talking about their college plans, I was sitting against a wall trying to regain my composure to get up and walk across the stage with everyone else, biting on my own hand to get through the pain so hard I broke skin. That summer before college was pretty miserable. I was in and out of doctors’ offices while trying to make plans to move over 300 miles away for college.
I was diagnosed with Crohn’s disease three days before I moved into the dorms at San Francisco State. I spent much of my first semester in my dorm bed under mounds of blankets with the heat blasting because I couldn’t eat food and I just never could get warm. As it turned out, I had a blockage in my large intestine that had caused inflammation, which in turn shut my whole body down.
I was desperately trying to maintain a normal social life just after moving to a brand new place and without friends. That November before going to a dinner party a co-worker was throwing, I decided to shower and get ready in our shared hall bathrooms. I got in the shower and shivered so hard I couldn’t stop shaking. I kept turning the knob higher and higher until my skin was lobster red and near blistering. Though I had begun to burn my skin, I couldn’t feel it. I reluctantly got out of the shower and moved into a stall to put my clothes on. As I zipped up the back of my dress I started to get dizzy. I clutched a wall for a moment, telling myself to keep it together, before I collapsed on the concrete floor.
A couple of minutes later a girl from down the hall found me on the floor, lifted me up and walked me back to my room. The first thing I said was “don’t tell my mom, I have a party to go to tonight…” before passing out in the bed again. Thankfully, she and my roommate ignored my suggestion and found my mom’s number in my cell. She told them to take me to the hospital immediately.
When I got there, the doctor was ready to do emergency surgery to remove the blockage. I stubbornly pleaded with the doctors to find another way – after all, I had this crazy idea I was going to complete my Bachelor’s Degree in only three years and it was late in the semester to be dropping my classes for a surgery. The surgeons kept a tube snaked through my nose and esophagus to my stomach for two days while it drained the bile built up behind the blockage to the point of turning toxic. The buildup had triggered anemia, which in turn caused the coldness and fainting.
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Luckily, the doctor who treated me knew a specialist and major researcher in the field at UCSF, a world-renowned medical research school.
The specialist removed the tube, allowing me to speak aloud for the first time in days (until then I had been communicating via slips of paper I handed my mom, littered with obscenities directed towards the nurses and other doctors). We agreed to do the surgery over spring break in March as long as I promised to take the prescribed medications and my condition didn’t worsen.
I started taking a lot of pills. I was always the youngest person by at least 40 years in my local pharmacy. One of the pills, Asacol, I seemed to be taking all day with no perceived benefit. The one that stood out the worst for me though—Prednisone. Prednisone is a steroid used to reduce inflammation and is typically prescribed to people suffering with arthritis. It caused me to gain 10 pounds of water weight almost immediately. When I stood up to walk to class I would have sloshly ankles within minutes, so I started taking a shuttle to the other end of campus when I became unable to make the walk. My otherwise clear skin broke out in a bad way. I had mood swings; any little thing would set me off crying or picking fights. I remember one particularly depressing Friday night when the dorms were abuzz with partiers and I was watching Oprah with my feet propped up and crying into a carton of strawberry ice cream like a pregnant woman.
I made it to March, miserably, and then I went in for surgery. Because I was only 18-years-old they wanted to do what they could to not to scar up my body too much, so they did the surgery laparoscopically (with lasers) and pulled the damaged part of my intestine out through my belly button and glued it back together. While this procedure avoided any major scarring, to this day my skin’s misalignment becomes apparent when I gain and lose weight, which I do constantly because… I have Crohn’s Disease.
I came out of the surgery a little angry. A nurse commented to me that the surgery was more painful than childbirth so it should be a breeze when I start popping them out. Why the hell would an 18-year-old who just had their body torn open even give a fuck about childbirth?! I think it was her way of telling me it was okay that I was constantly tapping at the morphine drip button they put in my hand. I was using it to put myself to sleep. I was even angrier when they started telling me about all the meds they wanted to give me and when they told me that I had an 80% chance of having to do this again in two years, and AGAIN two years after that until I would eventually have to carry a bag because I didn’t have enough intestine left. Fucking gross, I wasn’t going to accept it. The doctors painted a very bleak and expensive picture of my future, right when it was just getting started.
I had smoked marijuana regularly in high school, Proposition 215 had already passed but there were no medical marijuana clubs in my conservative, rural, part of California. We still had to buy our marijuana from shady street dealers. I felt so cool and so terrified at the same time going to buy marijuana with a friend the very first time. I think the guy we bought it from was part of a local gang.
Moving to San Francisco and seeing the dispensary and medical card ads in the back of the free weeklies was a revelation. I was nervous about getting a medical marijuana recommendation because of the rumors I heard about government watch lists. But I knew I didn’t want to take any more of those pills, the effects of the pills were worse than the actual Crohn’s both mentally and physically.
I also had classmates at Journalism school chastise me for wanting to write about medical marijuana, like it was some funny joke. I stopped telling people about it unless they were already “in the know.”
My first “pot doctor” put me at ease immediately. He started telling me how I should use it for my Crohn’s Disease, how it would help me stop the pills and actually feel better. He made me feel normal, comfortable. I got to ask him all the questions my traditional doctors wouldn’t answer and he answered honestly. He said there needed to be more studies, but from what he was seeing with other people like me, marijuana was working. I asked my doctor at UCSF about it on the next visit, she briefly said she had heard encouraging things but she couldn’t recommend marijuana to me. Politics, you understand.
Over the years I researched holistic medicine and integrated that into my daily routine. I also smoked a lot of pot. I would be lying if I said I only smoked pot to ease the pain. Sometimes I smoke pot because I like it. Sometimes my brain is just as sick as my body and it feels good to do something to help myself instead of relying on everyone else.
This March marked eight years since my surgery and this August will mark nine since my diagnosis. I show no signs of needing surgery again in the foreseeable future. My health is one hundred percent attributable to my decision to ignore everyone’s discouragement years ago and replace all those drugs with marijuana.
Besides the occasional Crohn’s complication (it is an autoimmune disease so I get all kinds of bizarre symptoms through germs I come in contact with, everything from the common cold to shingles and inflamed eyes), I am healthy and have been able to live an otherwise normal life because of my choice.
Like I said, this is a story I have never wanted to tell, but one I now think is important to share. People still go to jail for marijuana. All across the country military-style SWAT raids are conducted on peaceful people because of marijuana. I bet at your dinner table with your “straight” friends and family you still won’t talk about it because they don’t want to hear it or you are afraid of getting busted. Weed isn’t just hippies, nag champa and reggae music. It’s how people like me—your friend, a person you may have met casually, your family, your coworker, your teenage daughter buying pot from a drug dealer—get through life, which is after all, what we are all really trying to do, right?