I had been planning to write a tribute to Aaron Swartz, but not only could I not find the words, I also didn’t think there was much I could add. That is, until I discovered that Swartz suffered from ulcerative colitis. I’m surprised that more has not been said about this, especially the seemingly obvious link between his eating habits and the disease, but then I realized, while researching his experience with ulcerative colitis (U.C.), that there isn’t much in the way of personal stories of U.C. on the web. According to the CCFA, only 700,000 Americans may be affected and most, I imagine, have no desire to talk about it. And so, this is what I can add to our understanding of tragedy of Aaron Swartz’s death: my experience with his disease.
What is ulcerative colitis?
Ulcerative colitis is a chronic disease of the large intestine that has no known cause and no known cure. It results from an abnormal response of the immune system, causing inflammation in the inner lining of the intestine and leading to many tiny ulcers. These ulcers produce pain, cramping, bleeding, bloating, and mucus but ultimately the disease can lead to more serious problems, such as weight loss, malnutrition, depression, intestinal perforation, and colon cancer. In rare cases, the parts of the large intestine may need to be surgically removed.
Managing the disease with medication is often as unpleasant as having it. Anti-inflammatory drugs like mesalamine (administered both orally and rectally) are usually taken daily. For some, that may be enough to control the occasional flare-ups. For more serious cases, short-term steroid use (e.g. prednisone) and long-term immunosuppressants may also be needed.
I am in the latter group. Among other medications, I take a daily dose of mercaptopurine, a “light” chemotherapy drug typically prescribed to leukemia patients. With it comes all the usual side effects of chemo: nausea, hair loss, loss of appetite, fatigue, constant sore throat, higher risk of getting an infection (e.g. scars don’t heal as quickly; I’ve had more colds in the last year than in the last decade) risk of liver damage (I have to go in for blood tests every 90 days), and a significantly higher risk of developing skin cancer (which is why I have to see a dermatologist once a year). Despite the frustration of not having a “fix-it” drug, medication is far from the worst of it.
Food is always followed by pain
In one of Swartz’s blog posts, he makes the comment that “food is always followed by pain.” I don’t know if he was specifically referencing his U.C., but I understand where he’s coming from: the fear of food. Red meats, vegetables with insoluble fiber, sweet fruits, alcohol, foods with sulfates, refined sugars, dairy products… all have been shown to aggravate U.C., though the research literature has been careful to point out that individual experience varies widely (Buchman, 2012). After living with U.C. for over a year, I’ve learned to avoid certain foods when possible, to only eat a little at a time, and to drink mostly water.
There is no hard and fast rule for what will cause a flare-up, but one thing I am certain about: the pain of hunger is better than the pain of U.C. and so it is not uncommon for me to go an entire day without eating (something which, if you knew me, would be unheard of a year ago!). Imagine preferring hunger to food or going to a new restaurant with family and being afraid to try anything on the menu.
Change is a catalyst for pain
For the most part, the medications I take keep my U.C. under control, but that does not mean I live carefree. I am constantly aware of my digestive system. I can differentiate between the various parts of it as it is constantly in motion (Constantly. I can feel it moving right now. I can hear it). I am also acutely aware of its schedule and so any potential changes to my daily routine have to be considered in light of this.
Last year, MPOW decided that all non-permanent staff members would no longer be allowed in the building before 8am. This included myself. I asked if it would be OK to enter the building and lock the door behind me, but my request was denied. This caused me a significant amount of stress (which has been shown to aggravate U.C.), not because I felt I was being unjustly treated (nb: permanent staff are allowed in the building before 8am but keep the doors locked until then) but because I would not have access to a men’s room. This was in the early days of my U.C., before it was conclusively diagnosed. I’ve since been able to adjust my morning commute, but at the time it was almost enough justification for me to quit my job.
Depression and anxiety
All of the above should shed some light as to why ulcerative colitis is so closely connected with depression and anxiety: fear of food, fear of change, a feedback loop of stress and pain, an uncomfortable awareness of one’s digestive system and the fear that others are aware as well. A number of studies have explored this connection (see the references in this article). According to the International Dictionary of Psychoanalysis (2005):
“The circumstances that trigger the onset of the disease or attacks have been identified by the majority of authors. […] Often, although not always, the following are found: experiences of object-loss, experiences of wounded narcissism with feelings of worthlessness, self-depreciation, and a sense of the impossibility of taking on new responsibilities. These experiences may result from new real-life situations (with a traumatic valence) or situations that are fantasized and retroactively reconstructed. In “Étude psychosomatique de dix-huit cas de recto-colite hémorragique” (Psychoanalytic study of eighteen cases of ulcerative colitis; 1958), Michel de M’Uzan and his collaborators wrote: “The common element in these factors is their ability to provoke in the patient a loss of self-esteem, along with the belief that he is unloved or incapable of overcoming a difficulty.”
During August and September this past year, I went to a dark place for a time. I dropped most of my commitments and refused to take on new projects. My productivity dropped at work. I stopped reading, stopped practicing the ukulele, stopped taking Codecademy classes, and withdrew into myself. My wife can attest to this. I found out I was going to be a father. I found out that I would not be getting a number of jobs for which I had applied and interviewed. It was a low point emotionally and while the thought of suicide never crossed my mind (honestly, I’m far too narcissistic to get to that point), I was certainly hating myself and ashamed and what I was not accomplishing… and blaming my body for all of it.
I am in a better place now. I still lack much of the motivation that I’m used to feeling. The fatigue from the chemo, the initial fear that accompanies change, and the frustration that comes with not having a definitive cure does get to me from time to time, but I’m more able to deal with it knowing that it’s part of the deal I’ve been dealt.
My wife and I are having a baby in three months. Tears are in my eyes as I type this because I’m so excited. We’ve been taking Bradley classes to prepare for (we hope) a natural birth. One of the most significant benefits of taking this course is simply knowing what to expect. By not being afraid of birth and all the biological pain/messiness that comes with it, we both feel more comfortable and prepared for when the day comes.
For those who suffer from ulcerative colitis, I hope that by reading this, you feel more prepared, less alone, and more able to get through each day knowing that it’s just part of an unfortunate deal. It’s nothing personal. We love you and you can get through it. If you have any questions or want to talk about it, please don’t hesitate to contact me.
Buchman, A.L. (2012). Nutrition in Inflammatory Bowel Disease, In: Crohn’s Disease and Ulcerative Colitis by D.C. Baumgart (Ed). Spinger, 643-653.
Kurina, L., Goldacre, M., Yeates, D. and L. Gil. (2001). Depression and anxiety in people with inflammatory bowel disease. Journal of Epidemiol Community Health, 55(10). 716-720.
Ulcerative Colitis. (2005). In A. de Mijolla (Ed.), International Dictionary of Psychoanalysis (Vol. 3, pp. 1813-1814). Detroit: Macmillan Reference USA.