I have read somewhere that for someone with Crohn’s on the SCD it will probably take 3-4 years to recover. The rule of thumb was to wait for one year past the last symptom before trying any illegals. I’ve been SCD for four plus years and it has been about a year and a half since my last symptom. Now comes phase two of the great experiment. Click through to see what I mean.
Next update from May 17, 2010 can be found here.
Find more of my videos, including higher quality versions on my YouTube channel: www.youtube.com/eatingSCD
Eating SCD 
I can’t wait to hear how you do after eating “normal” foods for several months. Keep updating us!
Thanks Shannon,
I plan on it.
-Paul
First of all, thank you for being willing to experiment with your health as well as share the journey. Much appreciated. I have many people in my life who are affected by intestinal challenges including Crohn’s.
So how do you feel? 🙂
I’m sure it was quite liberating to eat that yummy burger. The few days afterwards are the telling time! I pray that your system has strengthened over these years and you are able to have a more regular diet again.
Looking forward to hearing your update.
BTW, years ago I went through a strict diet change and eliminated so many things from my diet that even eating cheese would make my stomach hurt. I had really cleansed my system and it wasn’t used to fats, empty carbs or sugars anymore. For awhile when I was reintegrating new foods my system would get upset, sometimes severely. Eventually (for better or worse I’m not sure) my body got used to eating less healthy foods again. Now I did this from a choice perspective, not from something as severe as Crohn’s, so my system is different. I just wanted to mention that even with a healthy system before, that there was some major upset afterwards with certain foods (the first time I ate chocolate cake again was a rather painful experience!)
Blessings on Phase 2 of your journey! 🙂
Crystal,
You’re welcome. I guess you could say that I’m sufficiently motivated to experiment.
Generally I feel fine. Aside from what I said in the phase II video, I have to add that I did end up getting a gut ache for about two days. I stopped the illegals at that point and am giving myself time to recover. I’m going to try different “doses” of illegals at different intervals to see what happens.
You make an excellent point about diet change. I remember many years ago when I was trying to become more lean and fit I eliminated most of the fats from my diet. After about a month of that, I had a Big Mac and it made me feel really awful.
-Paul
Paul, I was on SCD for about 5 mos very strict, then went off and it took about 1 year and I was back where I started. I hope you have a longer remission time than I did. I stopped even the yogurt.
I pray for you to have a complete remission. I’m sure you’ve thougt of this but everyone is different and was your colonoscpy an improvemen over the previous one? Maybe you just take longer to heal. Please don’t throw it away like I did. I find it very hard to get started back. SCD did help, but I suffer from anemia now and don’t have much energy to cook. It’s easier to do what I’ve always done, eat out, bring home fast food, or packaged food.
Janice,
Thank your for your thoughts, prayers and cautionary tale.
I’m sorry to say, but I can’t compare my pre-SCD colonoscopy with my recent one. I recently tried to get the photos from the old to compare to the new, but they do not exist – I’ve learned a lesson in getting copies of my records ASAP.
Five years ago, pre-SCD, I was hoping to do the diet, go into remission and then not worry about what I ate. It turns out that I need to change my mindset. As far as my quality of life goes, I am in remission, but clinically speaking, the lab reports say that I am asymptomatic. However, I’m hopeful that I can continue to improve and eventually get a clean report from the lab.
I am finding that my body clearly responds to illegal foods. For instance if I eat an illegal meal, I will feel it the next day. What I am now hoping is that I can stay 80-90% legal with the occasional isolated meal and still make progress. As you can imagine this would allow me some social freedom. At this point I have no intention abandoning the diet as it has served me so well. I am only trying to learn what the future holds for me.
I hope you can overcome your anemia soon and start getting your energy back.
-Paul
Everything in moderation.
Why would you want to stop? 😉
I do understand the occasional social element, but for me, the SCD has been completely liberating! When I started I thought it would be so restrictive and a pain I wouldn’t last but a few weeks. One of the unexpected benefits of this diet is how incredibly clear my mind has become. I used to suffer from depression, anxiety, etc. and those were all ‘symptoms’ of my UC. Just having a clear mind again is motivation to keep going on this diet (even if less restrictive) indefinately.
The more I learn about foods, especially the processed and refined foods that are 90% of what we consume, I don’t have any real desires to leave the SCD.
Good luck to you and I look forward to hearing what you can ‘tolerate’ when consuming illegals. That was a big step going right into a patty melt and fries!
RSW
Randall,
My desire to stop is a product of my weaker moments…
Many people have expressed the help the SCD has given them with “brain fog”. I’m glad to hear that it has helped you in so many dimensions.
Yeah, the SAD is scary at best.
Thanks for the luck.
-Paul
Hi
How are you doing on your journey?
I’m a very long time SCD eater (I started in the mid 90’s) I was on the original SCD listserve with Elaine years ago, some of my posts are archived.
I was on SCD for 6 Years, cured, did what you are doing testing. I did fantastically for many years afterward, went back to a regular diet slowly (healthy wholesome foods, not junk food).
I discovered the trick for me was to not go over board eating foods high in sugars or the white foods, I love bagels and pasta and cookies and cake, consumed it for five years after SCD no problems.
Then i started eating too much and had some really difficult stress and I got a flare up about four years ago. I needed meds, SCD could not work quick enough.
So, my experience is that UC can come back under similar circumstances that caused it the first time, I’m having very mild symptoms the past few weeks and getting it back in check with SCD again. B
But you have to keep close check and go back on scd at the first sign of changes in your bowels and it will prevent that flare.
My mistake four years ago was letting it go and dismissing it, and then it was more than i could deal with and needed meds.
Hope this helps.
Best to you.
Ruth
Ruth,
I’m so glad to hear from you. It’s easy to find people’s experience with “phase I” of the diet, but I’ve only read one or two comments from people who have tried post-SCD eating. Your comments and experience are very valuable and I thank you for taking the time to share them.
I’m doing pretty well, thanks. I’m finding that my body is not quite ready for phase II however.
Just curious, did your doctor consider you cured?
What constituted “overboard” for you? Was it small amounts spread over time or isolated larger amounts of illegals. Or perhaps some other quantification?
I’ve just realized the irony of my last big stress – it was the voluntary colonoscopy to see how I’ve responded to the SCD. It was completely optional as I felt no need for medical attention. Silly me.
I’ve heard something similar from another person, post-SCD. She said she went off SCD (after remission) for about a year then realized that she had been “in denial” for a while and needed to go back to the diet.
Here is a question I have for you. Given that you found that you could flare again post-SCD do you think that your flares constitute a progression of the disease? Or are the flares akin to a headache – a temporary pain that leaves no damage afterwards?
I’ve heard something similar from another person, post-SCD. She said she went off SCD (after remission) for about a year then realized that she had been “in denial” for a while and needed to go back to the diet.
Here is a question I have for you: Given that you found that you could flare again post-SCD do you think that your flares constitute a progression of the disease? Or are the flares akin to a headache – a temporary pain that leaves no damage afterwards?
Thanks again for your input. It was great to hear from you.
-Paul
I don’t think i made it clear in my previous comment that the flare up four years ago lasted for three months, and scd and meds got me better and in check soon after. I reintroduced non scd foods again after that flare.
So this most recent “almost flare” three years later I caught in time and I’m feeling good on scd, unwilling to stray at the moment, at least a few more months. 😉
So that was 3 more years after eating non scd foods before this past mini episode.
I think major stress is the real trigger for me!
Ruth,
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
nice cabinet !!
Hi Paul,
I have colitis and just began the SCD recently, with the goal to be off medication someday. I plan on tapering off of pills before adding illegal foods back into my diet. Do you take pills anymore? If not, how long had you been on the diet before you stopped or began to taper off?
Thanks,
Roxanne
Hi Roxanne,
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
Hi 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
Amy,
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
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.
Andy,
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: https://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: https://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
Hi 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
Susan,
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
Hi Paul,
Great blog! After two and a half awful years of UC – with no sign of remission (constant steroids, mezavant, imuran, humira), I decided to try the SCD. I had researched it for over two years but I think I needed this desperation to start. I’m on my last day of the Intro Diet – Day 5. I’m starving! Have lost 6 pounds over the 5 days. I usually need to eat a LOT in order to maintain my weight. I’m very slim. I’m just wondering if there is anything more I can start to fill up on now in Phase 1? Also, when do I move to Phase 2? I can’t wait to start baking with the Almond Flour in Phase 3 so I hope it agrees with me!
Hi Vicky,
Thank you for the compliment, I appreciate it.
I’m sorry to hear you’ve had such a difficult time with UC. It is a hard thing to live with.
I hope the SCD can provide you with relief.
It’s a common misconception that there are stages for the SCD for people with IBD. In the BTVC book, Elaine recommended an intro diet for the quick control of diarrhea, but then all the rest of the SCD is game. The phases of SCD that are found on Pecanbread.com were developed for children with autism.
Here is a nice post on the subject by Raman of scdrecipe.com: Stages of the SCD.
Just keep a very detailed and complete food log to determine what you can tolerate. As you heal, this list of things that bother you should grow smaller.
Go ahead a start almond flour, but go slow as it can be problematic in the beginning.
As far as filling up, that can be a challenge. Just eat as often as you are hungry. It may not help you to know this today, but that hunger will eventually subside.
-Paul
That’s great – I’ll try the almond flour next week in baby steps! The past two days, I’ve realised I’m better off avoiding any fruit altogether for the time being! My BMs are down to 2-3 times a day as opposed to 8-12 times a day! And that’s after just one week on SCD! Still have loose D with b and m but trying not to worry about that as I know that can take months to heal. I’m assuming the reduction in frequency means that the diet is definitely helping so I hope it continues to improve! It’s all one big waiting game with this disease!
Thanks for the help!
Vicky,
Wow, isn’t it great to get results just by changing what you eat? Congrats on your improvement and hang in there!
-Paul