My Story
My name is Matt Robinson. I have Ulcerative Colitis—for now. This is my story, why I write this 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 to everyone. I believe in whole-person, whole-body care, and am frustrated with IBD treatments that mask symptoms and leave the root cause of disease undisturbed. 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 Specific Carbohydrate Diet, developed by Elaine Gottschall, microbiologist and mother of an IBD sufferer. The diet claimed to heal IBD by changing the ecology of the gut, starving the pathogens that are causing inflammation. 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



Matt,
Wow, your history and commitment to wellness is incredible. May I suggest in “your story” that you identify was SCD is. I get that it’s a diet but what do letters represent? Keep trekking down the healing path!
Sure. Good point. I’ll outline that in the My Story page.
Thanks for sharing your story! It was sent to me via a friend from Daily Strength support group… I too have a type of IBD was told it was UC at first then latter they said it was a mild case of Crohns. After trying about 5 costly drugs…which seemed worse than the original symptoms. I discovered through much prayer to watch what I was eating… Dairy and too much sugar seemed to trigger my flares… by changing my diet and limiting my sugar I’ve been able to avoid flares. This all began for me in my early 20′s. I am now living proof that you can control your symptoms… I am 52 now and have been living drug free and have not had to have any surgeries. Symptoms are different for everyone. There is no cookie cutter for this disease so it really is tough. I really feel a food diary is a must – I don’t know what your SCD diet is either but I agree a diet change is definitely worth trying!!! Thanks for sharing!
Thanks Marcia. It’s great to hear your story, and that diet has held you med-free for so long. that is encouraging, indeed!
Hey Matt – I’ve been on the same long journey you have, just different roads. After lots of drug trials (including the dreaded Remicade), my 11 year old son’s Crohn’s Disease went from “mild” to “severe”. I decided to take control and he agreed to Elaine Gottschall’s Specific Carbohydrate Diet. MAGIC! Within one week his stools were formed and down to one per day. He is now 16 years old – approximately 2 1/2 years on this diet without any, let me repeat any flares. Cooking for this diet is stressful, but always worth it…I was stressed, had to quit my job to keep up and unfortunately was hospitalized with Ulcerative Colitis last year for one month! This was a new diagnosis for me. I started the SCDiet in the hospital – my ticket out! Weaned myself off steroids, stopped Remicade and refused all other drugs. One year later, no issues for me! As Elaine Gottschall says, you have to be “fanatical” about the legal and illegal foods. The other piece that my son and I have found that saves us is a simple food panel you can get through a naturopath that tells you what foods, spices, etc. your body is mildly, moderately and severely sensitive to. It is a blood draw based on IgE and IgG4 antibodies – sent to a lab in Washington state. Ask for the Basic Food Panel (E95) and the Extended Food Panel (A95). You may find out about the foods that are okay on the SCdiet but that your body does not tolerate. You might be amazed at how this completes the missing pieces to your better health and perfect bowells. We were amazed when we pulled foods out of our diets that we had moderate and severe reactions to. My son’s swollen knees and sore joints went away when he quit eating peanut butter. My anal fissures disappeared when I quit eating avacado, cashew butter, eggs and dairy. Our profiles are completely different. I had my done over seven years ago for other reasons…should have believed in it then and I may have avoided the hospital! As a side line – sounds crazy, but my daughter’s severe Asthma went away from eating the SCD meals I cook for the whole family. If she goes too far from the diet, her Asthma returns. Here’s to your good health! Julie
Julie,
You have quite a story! I’m so glad that the SCD works so well for you and your family. My wife has psoriasis, and has noticed that when she eats SCD, her symptoms get better too. So, I’m not surprised that SCD helps your daughter’s asthma. I’m convinced that many of these idiopathic ‘autoimmune’ and inflammatory conditions can be helped, prevented, or maybe even cured with diet.
I am doing the blood panel you suggested at the end of Feb. I’m really looking forward to it.
Tammy,
Can you seek out a nutritionist? Or maybe another consultant? You can try the Specific Carbohydrate Diet w/o a doctor. You can order Breaking the Vicious Cycle and get started straight away, if you want. If you have a library nearby, they may even have a copy. There have been lots sold internationally.
Wow what an awesome story!
After reading your story, I have a strong hunch you have SIBO. Please get tested for that. Also parasites..have you tested and ruled them out?
For SIBO, read Dr Pimental’s book, the new IBS solution.
Cheers, P
I have not been tested for SIBO, but I will ask my Doctors about it. Thanks for the tip! I will look for the book.
Best,
Matt
Good luck!
After reading your story, it occurred to me that you might have the same problem that I do……I am corn allergic and went undiagnosed for over 20 years. I heard all the common diagnoses like stress, “nervous stomach”, IBS, etc. When I finally figured out my problem by doing an elimination diet, I was able to improve tremendously by avoiding corn. I still had pretty frequent bouts of D and stomach cramps even when avoiding all corn derivatives on labels so I dug deeper. That’s when I found out about hidden corn and food additives on produce, meat, and in dairy. Once I cut out all hidden corn, my D was gone and only returns when I get dosed with corn accidentally.
Diets like SCD and GAPS are wonderful, but the missing link is how to avoid citric acid in organic meat or baby carrots, gassed or waxed produce like apples, citrus, tomatoes, peppers, and corn derivatives in personal products and medications (almost every OTC or Rx medicine and supplement contains at least one corn derivative). Anything enriched or fortified is corny as well (including iodized salt and enriched wheat and fortified milk).
Now I follow a very strict diet…..I only eat pure food. I buy very specific brands of food and make most things from scratch, but it’s all worth it to be free of the monster chronic diarrhea. I frequent the avoiding corn forum on Delphi which is where I originally learned to avoid hidden corn: http://forums.delphiforums.com/AvoidingCorn/messages
Thank you so much for sharing your story with the world. I seem to have traveled a similar path. Now 9 months after the first onset of symptoms, prescription drugs later, and still no real diagnosis because I didn’t have any real test completed, I took it upon myself to try SCD. I am seeing slight improvements after a few weeks. I often wonder what the next step is and what I should subject myself too, which is probably the case with many others with GI problems. Definitely not an easy topic to discuss. Thanks again for sharing with everyone.
Thanks for sharing all of your research and information. I was diagnosed with UC with a severe flare-up that needed predisone to get the inflammation under control since i am allergic to other meds generally prescribed. I also started taking Aloe but got lax and also gave my system a break. last year with the holidays and too much stress overall put me into another flare up and someone shared Elaine’s SCD website with me, but it does not use Aloe. I found your website and was grateful to see that you did have success and immediately re-incorporated it into my regimen. and in just a short time not only am i 90% better but my BMs are solid. what a relief. thank you again, for taking the time to research and post your finding.
I’m so glad you’re feeling better Marilyn!
Best,
Matt