I’ve been about 90% SCD. I still eat the SCD yoghurt. In general, I’m doing fine. I’m a little confused by illegals though. An illegal, say like some pasta, can have two effects on me. It can make for a more solid stool, but then make me use the restroom subsequently more often with looser stools. Of course I don’t know the long term effect of doing this. It may be a very bad idea, but only time will tell. I’m not worried about it because when I do have an illegal, even though it affects the quality and quantity of my bathroom visits, it doesn’t create the other symptoms I was used to before the SCD: cramping and bloating.

I have not tried any other protocols.

I’m glad to hear your son is doing well. That’s great.

-Paul

The last post on this blog is November of 2009. In that it’s March of 2011, I’m wondering how you are doing? What has happened with you over the last year in regards to your experimenting with illegals? Are you still on the SCD, or have you been able to continue eating some illegals? Also I wonder if you have tried any of Jini Patel Thompson’s protocols (from Listen2yourgut.com) for IBD healing?

My son with crohn’s was on the SCD for 1 year, and then did her wild oregano protocol and took natren probiotics for 1 year with some success. He also used the aloe vera juice for mucosal healing. He is now eating about 50% legal and 50% illegal food and is doing well for the past year. He stopped the probiotics but continues with the SCD yogurt every day.

Susan

I’m sorry to hear that you aren’t doing very well. If you want to try a different medication you should look into low dose naltrexone (LDN). Many people are having good luck with it and I believe it carries less severe side effects. See this site for some info.

As far as advice, there are a lot of things:

- Read “Breaking the Vicious Cycle” cover to cover. Then read it again.

- Download my illegal/legal foods cheat sheet which is a compilation from the BTVC book and website and make it in a form you can easily reference. Here’s the page: http://eatingscd.wordpress.com/resource/

- Read the BTVC website: http://breakingtheviciouscycle.info/

- Read the Pecanbread website: http://pecanbread.com/

- Join and read the BTVC_SCD group on Yahoo: http://health.groups.yahoo.com/group/BTVC-SCD/

- Join and read the Pecanbread group on Yahoo: http://health.groups.yahoo.com/group/pecanbread This group is targeted for children on the SCD particularly for the autism spectrum, but has much helpful info for all.

- Read every label of every food you buy, every time you buy it as ingredients can change.

- Be aware that “plain” meats such as chicken can contain illegals – read these labels too.

- Be patient – it took a long time to get sick and you will not get completely well quickly. It is typical to feel improvements relatively quickly, however.

- Learn about the intro stages on Pecanbread.com and use them: http://pecanbread.com/p/how/stages.html They are not in the BTVC book as they were developed after it’s publishing. The info on pecanbread is all legitimate. I believe Elaine Gottschall was involved.

- Learn how to deal with cravings. If you are craving an illegal – eat something, anything legal to get you past the craving. Give this post a read: http://eatingscd.com/2010/08/10/temptation-and-the-three-ds/

- Keep a very detailed journal including your medications, what you eat, when you ate it, any and all symptoms and reactions, sleep, mood, etc. This will help you track your progress. Do the Crohn’s disease activity index on a regular basis (see this post).

- Understand that you may experience setbacks. It is not uncommon to have flares at the 3, 6, 9 and sometimes even 12 month times.

- You may experience die off. Read this at pecanbread.com

- You’ll probably make mistakes. Don’t worry about this or be too hard on yourself. You’ll learn to identify them and you’ll learn from them.

-Don’t cheat with illegals – it reduces the ability of the SCD to heal your body and lengthens the time it will take.

That’s the stuff from the top of my head anyways.

-Paul

Your story is inspirational. I am suffering from Crohn’s, and I am looking to shift to SCD. I am on Imuran and Pentasa but not doing very well.

I am waiting for a break from work to get started on SCD. Is there any specific advise you’d want to give for starting on SCD?

Thanks,
Andy.

The short answer is no, I’m not experimenting anymore.

I am now on to post-phase II on the diet. I started trying illegals in early April of 2009. In late April I had a gut ache that lasted two days which was very unusual for me. I still ate illegal which became more and more illegal – lots of carb junk. This changed my bathroom habits, but did not give me any more pain. I had to realize though that I wasn’t happy anymore – I was going to the bathroom too often and there were some close calls. The funny thing is that it has been more psychologically difficult to get back on the diet the second time than it was the first.

While I was eating illegals, I found it difficult to limit the amount of illegals I had – a personality weakness I suppose.

So I’m back on the SCD proper again. Or rather I’m legal except for the strong coffee I have in the morning and afternoon. I didn’t do the stages, but it took me a week or two to get back to an acceptable number of calm trips to the bathroom.

Remission rocks, doesn’t it? It really changed my life to not have to think about bathrooms and scary drug side-effects.

Congratulations on the babies! Knowing how often I eat, I’m suspecting that pregnancy kept you pretty busy with a fork!

It’s hard to know what to think about eating the illegals. The question I had was how they were affecting me. Were these illegals doing damage that would pile up over time or are they acting more like a milk allergy where I’m uncomfortable for a while, but no damage is done. Considering that I’m recovering pretty quickly from my phase II experiments, I’m guessing that no real damage is done.

The best I can tell you is to listen to your body and keep track of your symptoms so you can see any trends that may be developing.

-Paul

I’ve been enjoying your blog for a while now, and I am curious to know how your Phase II is going? Are you still experimenting? I’ve been on the SCD for 2.5 years and have been in remission from Crohn’s the whole time without meds. I’m currently pregnant with baby #3 (I had great success with the SCD while pregnant with baby #2), and I’ve been cheating here and there without any major symptoms but I’m still fairly scared about what would happen if I ate too much of the illegals. I have to admit it was so lovely to have a piece of simple homemade whole wheat bread with lots of butter! And I keep wondering if people on SCD actually do heal enough to tolerate eating a healthy version of a western diet. I hope you are doing well, and I would love to know how your experiment is going.
-Amy

I was not taking any meds for my Crohn’s before I began the diet and still take no meds for it.

It’s impossible to predict how long it will be before you may be able to consider tapering your drugs. My best advice is to listen closely to what your body is telling you and go slowly. I know it’s hard to be patient, but give it your best shot. It helps a great deal to keep a detailed log of your experience. Record what you eat, how you feel, trips to the bathroom, general mood, medications, etc. This will help you see what the SCD is doing for you and give you a more objective view of the process to be able to spot what is working and what is not.

Standard disclaimer: Stopping medications can be a risky venture if not done correctly. Be sure to seek the advice of your doctor on decreasing your medications. Even if your doctor doesn’t support your use of the SCD, he or she will be able to appraise you of the best way of weaning from medications.

-Paul

Let me see if I’ve got this right:
1. About four years ago you had a flare brought on by too much non-SCD foods and stress.
2. Meds and SCD got that under control w/in three months.
3. You then reintroduced non-scd foods.
4. You then had an “almost flare” one year ago (three years after first 3 month flare).

This makes me curious to see if you have a trend of flares becoming closer together in time when you are eating non-scd.

I hope that you don’t have another flare, but this may be something to remember if you do.

Stress sucks!

-Paul