Happy Colon

Gut Feelings

In a Nutshell

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.

Current Practitioners

  • Gastroenterologist
  • Acupuncturist and Chinese herbal medicine practitioner
  • Functional medicine doctor

Current Prescriptions

  • 6MP
  • Prednisone, 7-7.5 mg daily (I’ve been on prednisone since May of 2011, unfortunately. I stopped tapering at one point because even though the prednisone wasn’t helping me, I was getting worse when I tried to decrease the dose. Now I am tapering unimaginably slowly.)

Current Non-Rx Therapies

  • Chinese herbs
  • Probiotics
  • Acupuncture (should be every month or so but ends up being longer)
  • Sporadic attempts at meditation and tai chi

Current Diet

  • NO gluten, dairy, sugar, yeast, alcohol, caffeine
  • NO fried foods, ruffage/raw vegetables, spicy foods
  • LOW fiber, fat, sweet (a little honey or maple syrup is okay as a treat)
  • MAINLY EAT gluten-free grains (millet, rice, quinoa), chicken, fish, eggs, red potatoes, peas in small amounts, certain other vegetables in small amounts on occasion, fruit (bananas, avocados, and pomegranates with no reservations, and the more fibrous and sweet fruits as a treat), and salt – lots of salt!

Timeline

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.

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7 comments on “In a Nutshell

  1. Levi
    December 11, 2012

    Hi Roxanne, it is Levi again. I found remission with my UC by quitting all of my medications and juicing organic fruits and vegetables. Juicing did not replace my diet, it only supplemented it. I juiced organic cabbage, carrots and apples about 3-4 times a day. This got me to 80% remission within 3 days. After the same results for 3 months, I added psyllium husk fiber on a daily basis. That got me to 100% remission. I have been holding steady since, medication free. I’ve had UC for 8 years before I discovered this. Would you think of giving it a try?

    • Rox
      December 12, 2012

      I started juicing last summer – I had cabbage juice everyday since it’s great for the colon, but this didn’t seem to help much. I’ve since stopped and found that Chinese herbal medicine works best for me. I was in a severe flare and the herbs got me out of it, to a point where I was symptom-free for a few months. I’ve had ups and downs since then but am still working with my herbalist and a functional doctor to figure things out. I’m sure I’ll eventually return to juicing, though, because I’ve heard wonderful things about it. It’s great you found what works for you.

  2. Levi
    December 12, 2012

    Maybe the combo juice with carrots and apples is the trick?! May I ask which herbs you use? Where do you get them?

    • Rox
      December 12, 2012

      Maybe for you this combination was the trick, but unfortunately, everyone has a different constitution and flares vary in cause and severity. The Specific Carb Diet & fecal transplants have both been miracles for some people with UC, but I’ve tried both and neither worked. So I don’t think I’m still flaring because I didn’t juice apples and carrots with the cabbage. If only it was that simple for me! Fortunately, I’m working with an incredible practitioner of Eastern medicine who is also a doctor in China. I don’t know what herbs he gives me, but I don’t think most would have an English equivalent anyways. If you’re interested in Chinese herbal medicine, it’s definitely necessary to work with a practitioner.

  3. Levi
    December 12, 2012

    Thanks for the reply. Glad to hear that is working well for you!

  4. Amanda
    March 22, 2013

    Wow this is really comprehensive and your diet sounds challenging (to say the least). My boyfriend’s mother has Crohn’s and does the low fiber, lactose-free and low residue (not even sure what that means). She avoids fried food too but isn’t off gluten or sugar. How much do you find your diet helps with your symptoms?

    • Rox
      March 22, 2013

      Low residue is a diet of easily digested foods – soft, bland, low fiber foods, like chicken, boiled vegetables if the fiber’s not too much, soups, white rice, etc – which is basically what I’m doing right now except that I am eating whole grains like millet and quinoa. I know that raw veggies or something like almonds would bother me during a flare because they’re too rough, and fried foods are a bit nauseating during a flare and can lead to worse symptoms too. Milk has bothered me ever since I’ve had UC, whether I’m flaring or not. As for the gluten and sugar, I don’t see a difference really, but they can both contribute to bacterial and yeast overgrowth in the intestines over time, and refined sugar is inflammatory, so I avoid them but do occasionally cheat with a small amount and don’t have a problem. There are a lot of people with Crohn’s or UC who are much more sensitive to them, as well as grains, though, and wouldn’t be able to cheat at all!

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