“Super SCD Me”- The Great Experiment

Diagnosed with Crohn’s March 2010, though I had symptoms in January and docs couldn’t figure out what was wrong with me.  Started prednisone from April-August 2010, with NO improvement, and had horrible side effects.  Started Humira in August 2011 and that worked great for me… until it just stopped and gave me an infection which landed me in the hospital for a week in early September.  That’s when I decided not to go the immunosuppressant route and jump on the SCD bandwagon.

I told my doc, one of the top GIs in Chicago, that I wanted to explore SCD. His response: chances of a major flare up just relying on a diet solely are 70% and that the next one could be so huge that I may have to remove my colon.

Knowing that success is likely NOT on my side- I am still resolving to DO this SCD diet, and I’m going to make it work. I’m SICK of the flares, sick of the pain, sick of the poop, sick of getting shot up with Humira, sick of the thought of spending hours in the hospital getting mouse-proteins injected into my bloodstream with Remicade.

And so Saturday, September 8, 2011 is when I decided to drop the drugs, and use my anger to dive head-first into SCD in one last, desperate attempt to save my precious, inflamed colon without pumping it full of crazy meds.

I have been working with 3 other doctors at a different hospital that are supporting my approach (1 family medicine, 1 infectious disease specialist, and 1 GI) to monitor my bloodwork, stool samples, and subsequent colonscopies. I will provide the results on a weekly basis indefinitely to see, through close monitoring, if it works or not. I’m talking my actual blood test results: what they mean, and the progress of my inflammation.

The purpose of this site is to chronicle my experience. I’m going to be meticulous about this, folks. There are so many unknowns when it comes to treating Crohn’s or UC, and there’s never a “right or wrong” answer as to how to treat it. I’m sincerely hoping my experience with the SCD experiment will help you make your own decisions when deciding how to best treat your Crohn’s or UC.

Results!!

  1. 10/13/2011 at 1:48 am

    Great story. Great blog. I’m a big fan of SCD but there are a bunch of things you can do to help improve your chances of success. Let me know if you ever need help troubleshooting your progress. Best, Alan

  2. 10/13/2011 at 2:59 am

    I will def reach out to you, Alan. Thanks much for the support- this is scary stuff and I could def use some help. 🙂

  3. Leslie
    10/14/2011 at 6:16 pm

    Hi Jo,
    I am excited to see how this goes for you. My 12 yr old daughter has been strictly on the diet for 1 yr. It has changed her life. I pray the same for you!
    Leslie

  4. Leslie
    10/18/2011 at 5:01 am

    Jo-My 12 yr. old daughter, dx w/severe Crohn’s last Sept. has been on SCD for a year. (We’re friends w/the other Leslie w/the other 12 yr. old!) She was in hospital in Oct. for a week before the diet, and missed 23 days of school. 3rd infusion of Remicade she had anaphylactic response and had to stop. No meds since. Her labs have been perfect since Dec, she gained her weight back, is growing again, and feels fantastic. We’re very grateful for this diet.

    One test our 2nd opinion Dr. told us about is fecal Calprotectin, an inflammation marker which is specifically sensitive to intestinal inflammation. That’s the only lab result of hers that still indicates IBD. (at 1st it was 1243, now it varies from 68-316. Normal people are 50 and below.) Her Drs. want her to get a Calprotectin test ev. month to detect a coming flare. Would be interested to know the other SCDers Calprotectin test results. Happy about your blog! Let me know if you want me to send you recipes and food ideas. We thought our family used to eat healthy food. Now I realize how empty all the bread, pasta and other starches were. Not nutritionally dense like this great diet! ~Leslie

    • 10/18/2011 at 9:02 pm

      Hey Leslie- GREAT feedback. Thank you for it! So sorry the Remicade didn’t work. Really, it’s really just a game of rolling the dice- am truly sorry the odds weren’t in your daughter’s favor.

      In August, my calprotectin level was 3,525. It was the single highest value my doc had ever seen, so I can definitely empathize- that is quite a bit of inflammation.

      Obviously it’s not that high now, though I do not have a number. BUT I should have a stool sample coming up either this week or next- I will make it a point to email you the level and let you know.

      How else are they measuring her inflammation? Is she getting blood work, x rays, or colonoscopies?

  5. Leslie
    10/20/2011 at 4:02 am

    Hi Jo- Wow, 3,525! I sure hope it has gone way down, and will be interested to know your next Calprotectin results. My daughter gets blood work done periodically (CRP for inflammation and the other standard white blood cell count, iron, etc) but they want her Calprotectin tests every month. Her doctor is elated that her blood lab levels are perfect and that they do not indicate any history of IBD at all. Her Calprotectin is the only indication of IBD and they say the results so far do not indicate “active disease.” Her doctor says to “keep doing what you’re doing” and we’ll keep an eye on her labs to watch for a potential flare.

    When she had the reaction to Remicade, they wanted her on Humira right away as an alternative. But since her labs were perfect, they said it was reasonable to wait until she begins to indicate a flare to start Humira. We’re willing to do that if needed, but are praying SCD will in fact “heal and seal” her gut lining as it has done for so many.

    Haven’t seen the list of foods you’re eating, but wanted to encourage you to make homemade bone broths for chicken or beef soups. GAPS diet has a lot of info on the healing properties of bone broth. We learned the finest restaurants all simmer bones overnight for the best stocks. It’s the gelatinous part that is especially beneficial. We puree butternut squash and put in shredded chicken, cauliflower, carrots and strips of zucchini for “noodles.” Really delicious and easy to freeze and heat up.

    Although it requires much dedication, seeing my daughter laughing, dancing and joyful instead of staring at the floor in pain, is worth every effort. I have these muffins for breakfast in the oven now: http://elysiumeatery.blogspot.com/2009/06/blueberry-muffins-scd.html

    Glad my friend Leslie sent me your link! Look forward to hearing more of your good news!
    ~Leslie

    • 10/20/2011 at 8:22 pm

      Hey Leslie, thanks for the awesome post. 2 weeks ago, my calprotectin level was probably perfect. I literally just received a call from the doc saying my inflammation went up this week, and there are a variety of different factors that may ahve been associated. I’ll post results up soon- either tonight or tomorrow morning, but Week 6 was a bad one. Gonna chow down on some broth.

      • Leslie
        10/21/2011 at 2:19 pm

        Hey Jo,

        I hope you got my email.

        You have to constantly tweek what you are eating, especially in the beginning. If you join the BTVC list serve on yahoo.com, there are so many people discussing great ideas. Also, you can go to pecanbread.org, it is a site for scd and autism, they have a lot of great stuff, recipes and probiotics etc. I hope you have a great weekend!
        Leslie #2 🙂

      • 10/21/2011 at 3:55 pm

        I got your email- SO helpful! I will definitely give you a call at some point this afternoon, if you are available! If not, we’ll touch base soon.

  6. Kari Bitz
    10/27/2011 at 3:20 pm

    GO Jo, you are seriously wonder woman!!! I wish you only the best. I have been dealing with Chrohns for 7 years. I have been on SCD and love it. I am not 100% on it but still use so many aspects of it on myself and my entire family. I have been taking Remicade and Methotrexate and so with that I take the easy route of eating things I probably shouldn’t. I always fall back on SCD when I feel a flare even on Remicade.

    • 11/07/2011 at 7:57 pm

      Hi Kari- it’s interesting that you have flares on Remicade. It’s supposed to let you eat whatever you want! How long have you been on Remicade for? And I’m well in Year 2 of the whole Crohn’s drama- congrats to you for being a seasoned veteran and dealing as you have for 7 years.

  7. Peggy Waldrop
    01/13/2012 at 6:40 pm

    I’m very interested in your results. My husband was on SCD for 5 months and then a certain chiropractor talked him into testing his blood for food allergies (called ALCAT), so now he’s eliminated many good legal foods and added back in starchy foods and sugar (!) just because it showed he didn’t have an allergy to them. I am very skeptical of this diet and feel like it is nutritionally deficient. Reading your results on SCD will further my resolve that SCD is the best diet in the world!

  8. 01/15/2012 at 4:59 pm

    Hi Peggy,

    “Nutritionally deficient” is a common argument, but one I feel is subjective. There are ways to overcome nutritional deficiencies in the diet. I take plenty of vitamins and have just invested in a juicer that will make fruits and veggies easier to digest. Personally, I see nothing deficient about eliminating wheat, rice, and food-processing in my food.

    To be honest, I’m getting more nutrients now than I did prior to SCD. 🙂 Just because I never realized how much processed food I consumed, and I am in more in-tune with my health and body more than I’ve ever been my whole life.

    To be fair, I wouldn’t call SCD “the best diet in the world.” It’s more “The best diet in the world for someone with IBD.” And note that I do not follow the legal-illegal list verbatim. There are plenty of foods on that “legal” list that are actually illegal to me.

    I think the trick is using SCD as a baseline and then tapering that menu to how your body reacts to each food introduced.

    I will say that 4 months into SCD, I am med and symptom free, which is crazy quick, as someone with a severe case of Crohn’s disease in the colon.

    Keep following 🙂 BEcause results speak for themselves!!

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