My (evolving) Story

My name is Matt Robinson. I have Ulcerative Colitis—for now. This is my story as posted on my blog.

I started this blog because of the hell my most recent (and most serious) flare-up put me through. I write the things that I do here, because I don’t want others to experience what I have. I am congenitally curious, a learner, and a do-it-yourselfer, so I suppose this blog is also cathartic and a way of organizing the things I am learning about IBD and its treatment. I believe that many cases of Crohn’s and Colitis could have been prevented (even given a genetic predisposition); they were likely caused by our Western lifestyle—be it heavy use of antibiotics (like my case), or a combination of other factors (such as the combination of not being breast fed; poor life nutrition and diet; lack of bacterial contact throughout life; and processed food and pesticides, for example). I believe that the information explaining IBD treatments should be accessible, free of cost. I believe in whole-person, whole-body care, and am disillusioned with allopathic IBD treatments that simply mask the symptoms and depress our immune system, leaving us even more vulnerable to infection, disease, and cancer. There must be a better way, a more natural way.

The treatments and topics in this blog are those that I have worked with or struggled through. They are meant for three purposes: (1) To instruct and inform others about credible, natural treatments for IBD; (2) to provide a consolidated resource for finding and researching your condition; and (3) to provide a forum for discussion of the issues and struggles of living with, and striving to overcome, IBD by natural, non-pharmaceutical means. This third reason is why this is a blog and not a website.

My Story:
In December 2000, I left for Mexico to climb Orizaba, an 18,000 ft. volcano in southern Mexico. I missed the summit that year. Instead of climbing, I lay at base camp retching, spewing from both ends. I was dancing with some water-born pathogen, a regalito from a restaurant in Mexico City. When I returned to the states, my symptoms persisted for about ten days before I sought help. The doctor gave me two different antibiotics and a giardia medication I couldn’t pronounce. Like a good patient, I took all three and my symptoms subsided…eventually. Some few months later my D returned, except this time I didn’t relate it to Mexico. I had just gotten engaged, and was working two stressful jobs. I attributed my diarrhea (4-5 times/day) to stress. At the same time, I was suffering from what I thought was serious hemorrhoid pain. In early 2002, I went in for a preventative colonoscopy. Colon polyps run in my family, so it seemed like the smart thing to do. Indeed, the doctor found an inflammatory polyp. During the follow-up, my doctor mentioned almost off-handedly that I had ‘a little colitis’ in there—as if one could develop colitis somewhere else.

Confused, I asked what that was and what I could do about it. He didn’t explain colitis; instead he smiled and suggested I reduce the stress in my life. I believed him. About a year later (2003) my symptoms subsided. I attributed the subsidence to stress reduction. In the meantime, in 2004 I suffered from an anal fissure (fairly common in UC). After months of misdiagnosis by the same doctor as hemorrhoid pain, I went to a surgeon. He knew what it was right away, and I went to surgery—not fun.

The colitis remained in unexplained remission from 2003-2008 (remember, at this point I didn’t know what colitis was, didn’t think it was dangerous, and thought it [whatever it was] was gone, after all I wasn’t having symptoms). In 2008, due to the polyp found in my last screening, I had a second precautionary colonoscopy, but this time I had a different GI doctor. He saw my colitis (much worse now after six years without treatment), and immediately took action. He explained the seriousness of colitis, and put me on Asacol. Well, four weeks later, my wife and I decided to move from our childhood home of Indiana to Washington, D.C. I was finished with graduate school, we had two new kids, and I had gotten a good job out there. The stress of the move, having our second, and maybe the medicine sent me into a massive flare up.

This flare up left me on the floor, literally. I was running to the bathroom, on a good day, eight times per day, and on a bad day, I was on the toilet up to 22 times. As an athlete, I usually pride myself on my physical stamina and energy. This one knocked me out. I couldn’t climb a flight of stairs. I lost lots of weight. I had unpredictable fever and uncontrollable shaking (The upside is that I have a fantastic, supportive, and loving wife who carried me [sometimes literally] through the flare. I also had [and still have] a wonderful, compassionate, and very bright doctor.).

I tried Asacol. I tried Colazol. I tried Prednisone. I tried Imuran. I refused Remicade. I tried probiotics, in a cavalier and unstructured way (I didn’t do this treatment correctly, so it had no chance of working). All of those treatments took about nine or ten months, and none of the drugs worked. In fact, several of them (such as Imuran) made me feel so bad I couldn’t stand. I would just lie or sit down where ever I was, on the floor, outside, or on the bed. My doctor began to talk about removing my colon. Worse, while all of this was happening, we were in a new town, I was in a new job, and we had no family and no friends close by.

To give you a sense of time, this flare up began in November, 2008. Out of frustration, I started tracking my symptoms, diet, medications, etc. in the last week of March, 2009—that is also when I began reading in earnest about IBD and IBD treatments, both allopathic and naturopathic. The allopathic literature was doomsday, and very depressing, while much of the initial naturopathic ‘literature’ I read sounded like circus peddlers selling sugar-water miracle tonic. I was confused, alone, and frustrated.

In May of 2009, I read about the SCD. It was really by the grace of God that I found it. I was researching the effects of diet on IBD and came across Elaine Gottschall’s site. After reading the testimonials and some of the introduction to the theory, I immediately requested the book from my public library (which had eight copies in stock!).

I started the SCD in June of 2009. After a week on the diet, I noticed a change in my symptoms. None of the medicines to date had been able to control my symptoms, so naturally I was excited. My wife and I blundered through the first three months on the diet, learning, doing some things correctly and making mistakes with others. Despite our learning curve, my symptoms over the first three months of the diet continued to improve so that by August I was down to an average of 2-3 times per day. I began to wean myself off of medication (I was on three at the time: Prednisone, Colazol, and Imuran). By August, I was living medication free. Six months into the diet, my bowels had stabilized at 1-2 times per day, I was gaining weight, and my energy was returning. Thanks in large part to my wife’s support, I have stayed on the SCD strictly since June, 2009 and my symptoms have stayed at bay.

I do need to be honest about the efficacy of the SCD in my life, however. Even though the SCD brought me out of that flare up, it hasn’t cured me. After 18 months, my stools are still often loose, and my gut can still get easily angered—which means that I still have inflammation (confirmed by colonoscopy in March, 2010). I was devastated when my doctor confirmed that, after eight or nine months on the SCD, my inflammation had not subsided. But, all my reading confirmed that the SCD takes time (often two years or more), and could provide varying degrees of efficacy. Hey, the SCD may just take more time for me. Elaine’s daughter had been on the diet two full years before she was symptom free. (I’m impatient.) Nevertheless, I have found, in the SCD, one piece of the puzzle for me; I found that it could control my symptoms, making medication unnecessary. Hallelujah.

My other research suggested that there’s more than one natural healing path for IBD. So, though the SCD is containing my symptoms, it has not rid me of inflammation as quickly as it has for others. After my scope in March 2010, I began to experiment with adjuvant (in conjunction with the SCD, not instead of) natural treatments—the treatments you see in this blog. Some have worked for me, and some have not; however, I post both categories because IBD is so nuanced to your specific body that something that didn’t work for me might indeed work for you. I only post treatments and links that I have researched and used; those I find from multiple, credible sources (a proxy for peer review).

I wish you good luck in your search for natural IBD healing, and hope you find the resources and topics contained in this blog helpful.

—Matt