I’m a 24 year old with ulcerative colitis. My condition got so severe in 2011 that the doctors all agreed that my colon couldn’t heal and I would need surgery, which involves removal of the colon and the alteration of the end of the small intestine to create a makeshift colon. But I’m completely opposed to this plan and the reasoning behind it, so I embarked on a mission to heal my colon holistically. I have had great improvement with the help of Chinese medicine, as well as certain pharmaceuticals. Throughout this long, roller-coaster journey, my philosophy has been that I would rather take the time now to figure out how to heal my colon than take it out and deal with potential complications of a makeshift colon for the rest of my life. Check out what I’m currently doing and a timeline of events below.
May 2007: Diagnosed with ulcerative colitis (junior in high school). Treated with Prednisone initially and Sulfasalazine, a maintenance drug. That summer switched from Sulfasalazine to Colazal (Balsalazide).
March 2009: First flare (spring semester of freshman year of college). Treated with Prednisone.
July 2009: Began Specific Carbohydrate Diet (SCD) when I couldn’t taper below 15mg of Prednisone.
September 2009: Stopped SCD (didn’t help) and started 6MP (immunosuppressive drug I had been trying to avoid with the SCD).
December 2009: Second flare (fall semester of 2nd year of college). Ignored until…
January 2010: Hospitalized for four days since flare had gotten so bad. Treated successfully with IV steroids and Cipro (maybe more? I didn’t pay much attention)
October 2010: Contracted mono and stopped 6MP. Hospitalized for two weeks.
April 2011: Third flare – this flare (spring semester of 3rd year of college). Ignored until..
May 2011: Started Prednisone, which didn’t work, and I was admitted to the hospital, where I got a colonoscopy (showed worse inflammation than they expected) and began Remicade (an intravenous drug). Surgery was mentioned to me for the first time. I was let out of the hospital after two and a half weeks even though I still felt very sick; they expected the Remicade to kick in eventually.
June 2011: Began seeing a chiropractor.
July 2011: Began seeing an acupuncturist (not the one I currently see). In this month, the chiropractor’s work really kicked in and I started to do much better. After a few weeks, though, I began to backslide. Decided against continuing Remicade anyways.
August – November 2011: Continued to get worse and lose weight. Tried out another chiropractor, a holistic nutritionist, and a naturopathic-type doctor.
November 2011: Admitted to the hospital (for two months). Colonoscopy showed the worst inflammation my GI doc had ever seen, and I was told that surgery was inevitable. I was started on PN to gain weight.
December 2011: Began seeing Dr. L, my Chinese herbalist. Started to turn around. First “good” day was Christmas Eve.
January 2012: Contracted a severe case of c. diff near the beginning of the month but after being put on antibiotics, I began to improve more rapidly than before. Gained weight steadily. Released from the hospital near the end of the month and officially a patient of Dr. K (at MGH, later to move to the Brigham) instead of my GI doc at Children’s.
February 2012: Colonoscopy near the end of the month showed dramatic improvement, but colonoscopy itself sent me in a tailspin. Hospitalized at MGH for four days. Tested negative for everything but antibiotics saved the day anyways. Released on Leap Day.
March and April 2012: No symptoms!
April 2012: Started to have symptoms again at the very end of the month.
May and June 2012: Despite having some symptoms, I was well enough to return from medical leave and take classes for a summer semester. Wasn’t doing so well by the end of the semester though.
July – August 2012: Continued to get worse.
September 2012: Tested positive for c. diff (how long had I had this?!), was put on antibiotics, and symptoms nearly disappeared. Started the fall semester. Now seeing Dr. K at the Brigham.
September – November 2012: Ups and downs. At one point had a couple weeks of slow but steady improvement with an herb modification, but then backslid again.
December 2012: Was doing pretty well with a new herb regimen, but then out of the blue woke up with a 104° fever on Christmas Eve and went to the hospital. I was there for two days (Christmas Eve and Christmas) and got better, but my GI doctor thought that I had been septic. This was sort of a wake up call that something big needed to change.
January – April 2013: Began 6MP in early January and slowly but surely improved over the next several months. Also started seeing a therapist in January and saw her throughout these months.
May 2013 – Present: Things are getting back to normal! Took one summer class in May and June, then began a full-time internship in July. Shift focus from colon to whole life.