Make Yourself Healthy: Crohn’s and the SCD Experiment

In 2010, a Chicago woman named Johanna was diagnosed with Crohn’s disease. She was 27 years old. Doctors told her to take drugs. She resisted. Here’s what happened, from a 2011 interview:

What do you do for living?

I’m an IT project manager. I’m on disability now because of flare-ups of my Crohn’s. I’m just getting a portion of my paycheck until the doctor thinks I’m healthy enough to work. When my flare up was bad, I had horrible joint pain, horrible cramping in the morning and throughout the day (pain was 8-10 on a 10-point scale). Chronic diarrhea, maybe 5-10 times/day. I’d be in meetings and doubled over in pain. My GI said I had one of the most inflamed colons he’d ever seen.

When were you diagnosed with Crohn’s?

April 2010. My symptoms started in January 2010. Bad gas, got worse. Diarrhea. In March, pooped my pants at work. Never happened before. Ran home and changed. Went to the ER 5 or 6 times from January to March because I was in so much pain. They thought it was Irritable Bowel Syndrome. One doctor said it was stress. “You need to manage your stress better.” I didn’t know what doctor to see. Only when I went to the Northwestern University ER did they say you might have a GI problem. Then I got a colonoscopy and was diagnosed with Crohn’s.

How was it treated?

With Prednisone, a steroid with horrible side effects. It caused me to have a big swollen moon face, a big belly, facial hair, cold sweats all night, I gained 15 pounds (from 120 to 135). I started taking it in April 2010. I took it until August 2010. I stopped taking it because I still had the same amount of diarrhea. It wasn’t working. I told my GI at the time. He gave me bad info about how to stop taking it. I did stop taking it and found a new GI. The new GI put me on Humira, an immunosuppresant, a TNF [tumor necrosis factor] blocker. I started it August 2010. No one told me about diet — “eat whatever you want” [she was told]. It was a shot I would get every 2 weeks. At first I got 4 shots. Within days of the first shots, I felt much better. I was a completely normal person. The Crohn’s symptoms were completely gone.

What happened next?

Led a totally normal life, worked at my company with success, everything was good. At the end of July 2011, I started having pain. In early August, I went to a new GI at Rush University Hospital. They have a really good GI and nutrition team. They are among the first studying the SCD [Specific Carbohydrate Diet]. I told him I had stomach pain, etc. He said to double the dose of Humera. That wasn’t a bad call. I doubled the dosage of Humera and got much worse. That’s when I started developing the joint pain and mouth sores. Cramping, horrible horrible pain. I had diarrhea for about two months.

Now we’ve reached the place where your blog starts? [She started a blog called The SCD Experiment]

Correct. I couldn’t absorb any nutrients. I had to quit work. From 31 August to 3 September I had a 102-3 degree fevers every day. I hoped it would pass. I stayed in bed the whole week. Then I started vomiting. I decided to go the hospital. I had lost 10 pounds in a week or two. I went to the hospital 4 September. In the hospital I lost even more weight. It turned out I had both an infection and antibodies to the Humera.

The first hospital I went to on 4 September was St. Francis Hospital. They were meticulous with my diet, gave me gluten-free lactose-free meals. I was very well taken care of there. All types of specialties to figure out what was going on. I had an infectious disease specialist. The infectious disease specialist was adamant I had an infection.

How did you learn about SCD?

I was in St. Francis hospital trying to figure out what to do about my future. I was looking at all the treatment options. I was researching Remicade. It had been recommended. The next logical step. I went to a ton of forums. Wide range of outcomes. Even if it worked, I would be tied to it. Always a chance of infection. You have to go to a hospital every 8 weeks, at best. I want to start a family. I don’t want to be tied to a drug. I didn’t want to do it.

My sister sent me a link to the Amazon reviews of Breaking the Vicious Cycle. You should really try this, she said. I thought there’s got to be something to this. These people made it work, why couldn’t I? What did I have to lose by trying it? I wanted to try a natural solution before blasting my body with something else. My last day at St. Francis I started to do the SCD.

I left St. Francis after 5 days because I had an appointment with the top GI doctor at Rush, Dr. Keshavarvian. He told me my problems were due to a flare-up of the Crohn’s. Including the fever. He said nothing about my suppressed immune system and the way it makes you more vulnerable to infection — although to be fair I knew this. To his credit, he said to eat a lot of yogurt.

As soon as I saw him, he admitted me to Rush right away to begin Remicade infusions. Remicade is another immunosuppressant, very similar to Humera.

I asked a lot of questions about Remicade. I asked a lot of questions about diet. They said just do the Remicade, and eat whatever you want. It’s a big hospital. Huge overwhelming swarm of lab coats pushing Remicade on me. More than five doctors told me to take Remicade. All of them worked for the GI doctor I’d seen in the morning. They were part of his team. I told the nutritionist I had Crohn’s. They sent me a lunch tray with processed turkey meat, a ton of gravy, and a brownie, and tomato bisque soup. Not one thing I could eat or digest. My husband brought me SCD-safe food I could eat. Once I saw that brownie, I decided to refuse Remicade. You’re going to tell me what I eat has no effect on my body, I’m going to tell you you’re wrong.

They were trying to set up the Remicade infusions. I said I needed one more night to sleep on it. The next morning, the 10th, I said thanks but no thanks. I’m going to try this diet and see what happens. They made me sign a waiver and I went home. At St. Francis they put me back on Prednisone, at lower doses. I’ve been tapering off.

The first week I was super-scared. Is this diet going to work? I was very weak, couldn’t stand up in the shower. I still had major Crohn’s symptoms. Every Thursday I got/get blood work. The first Thurday after I started SCD, the blood work results were better [see website for details], but I still felt bad. The second week, amazing. I felt like a new person.

On 23 September I had a follow-up with Dr. K at Rush. I gave him all my blood work and told him what I was doing. He was concerned. He said the diet was hard to stick to and that the legal/illegal list — what you can and can’t eat — was different for different people. He said that the diet fails for 3 out of 4 people. When you’re on the diet, you can have a flare-up so bad that you need to have your colon removed. These are the risks that you are facing by not taking the Remicade or Imuran. However, he’s one of the people spearheading the study of SCD at Rush. He told me we don’t have any studies showing that this diet works so I can’t in good faith recommend it.

By Week 5 she was much better. By Week 19 she was cured, in the sense of feeling normal and having normal lab results.  “I don’t even THINK about Crohn’s disease,” she wrote. “Unless it’s to reflect on how so very thankful I am that my sister Angela discovered this diet and talked me into trying it.  I owe her my life back.” She started her blog at the same time she started SCD. Doctors told her the diet has a 70% failure rate. As the lab results and experience reported in her blog show, the diet worked.

 

 

 

6 Replies to “Make Yourself Healthy: Crohn’s and the SCD Experiment”

  1. And my question to that Doc would be, how often does the diet succeed *in people who strictly follow the diet?*

    I’d guess it’s a lot higher than 25%…

  2. Do people ever read the research?

    Here is what I found when I looked a recent review article:

    “Numerous studies claim that corticosteroids fail to induce mucosal healing in the treatment of CD, while small uncontrolled studies showed mucosal healing with enteral nutrition. Specifically, the latter studies reported downregulation of mucosal pro-inflammatory cytokine profiles in both the ileum and the colon after enteral nutrition – potentially very interesting observations in respect of achieving a healthy mucosal immunity. Given that the ultimate goal in the treatment of CD is mucosal healing (in addition to symptomatic improvement), this advantage of enteral nutrition over corticosteroid is valuable in therapeutic decision-making.

    (…)
    Further well designed large trials are necessary to support the current knowledge on enteral nutrition including long-term benefits of these interventions. Improved evidence to support the role of dietary interventions for inducing and maintaining clinical remission could lead to reduced need for drug therapy with its associated risk for adverse effects.” (YAMAMOTO et al., 2009, http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2009.04035.x/full)

    What does that tell you?

  3. That’s a really interesting story. Thank you for sharing it, and the mention of her blog.

    I’ve been reading about the SCD for years now, and it seems that, as much as American doctors criticize it, or claim that scientific research to support it does not exist, there are patients out there who claim it has helped them.

    I can’t escape the sense that something about the American medical educational system, the FDA, big Pharma, and the various state boards of health is broken. They have this permanent, ingrained bias against certain therapeutic approaches.

    This is highlighted by the fact that, in other countries (e.g. Japan and the UK), enteral nutrition is a front line therapy used by the official, mainstream medical system for Crohns sufferers. (See the book “Beat Crohns!” on Amazon for more on this).

    So, why does medical science in the UK and Japan endorse a dietary-based, primary therapy for Crohns, while medical science in the US can never quite find support for anything but surgery and drugs?

    It makes no sense.

    Seth: I agree, well-put.

  4. Enteral nutrition is only the frontline treatment for young children with Crohn’s in the UK. It is a bizarre situation where the medical establishment have decided that it is effective, but only use it for children as they can’t justify dosing them with steroids etc due to the awful side effects, especially on their growth. Adults on the other hand are treated just as they are in the US, with a barrage of drugs and surgeries. It is beyond sense.

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