AFTER ONE YEAR!!!

Hello everyone!  I have finally decided to add a new category to our blog – “AFTER One Year”.  I have been trying to decide whether to keep my blog more general for everyone, with helpful tips, encouragement, recipes, etc., or to share my son’s day to day experiences now that we are to our one year mark. 

I had one mom ask me how Justin’s one year pill cam went.  Dr. Cohen said his intestines were perfect!  We have followed the SCD Diet strictly since February 14, 2011.  We were VERY excited to see that the hard work paid off!  So now that leaves us sitting here wondering what to do now?  Do we keep going on the diet for as long as we can hoping it will cure him?  Do we add foods back and jeapordize the good work we have done and possibly have to start over?  (And we all know how HARD it is getting started!)  What foods do we start with?  There were LOTS of things to think about!

I am going to use this new category on our blog, “AFTER One Year”, to share with everyone what I try for Justin and what works for us and does not.  And if any of the other mom’s out there that are at their one year mark, please send me what you are doing also so we can share with everyone!  Please remember that what works for one person, does not mean it will work for another.  But by doing this, I hope it will give light to the end of your tunnel working towards your child’s one year mark and help you come up with a plan and give you some ideas when that time comes.

We decided to start adding a few things back into Justin’s diet slowly and see what happened.  Justin loves eating healthy, but we know how restricting the diet is!!!  I had read somewhere when Justin was first diagnosed that this one Crohn’s patient was limited to rice.  I remember in “Breaking The Viscious Cycle” that sugar is not good for you, so I thought rice would be good.  Someone pointed out to me that giving a small portion to him one night might not actually cause any side effects.  I might need to give it to him a few nights in a row.  So I fed him one cup of rice on a Monday, Tuesday and Wednesday night.  (I’ve hears that it takes about 3-4 days for the food to go through the system and to cause a reaction.)  Exactly three days later, Justin was in the bathroom SCREAMING!  His bottom was swollen and red and it hurt badly to go to the bathroom.  He said he was staying on the diet and did NOT want to try any new foods!  I reasured him that it could have just been this particular food! 

To show you how great it is to talk to other mom’s in our group and for us to all communicate and keep in touch, I was sharing this with one of our mom’s, Wendy.  She remembered talking to Lucy, from Lucy’s Kitchen website, and she had told her that grains were one of the most important foods to stay away from.  I spoke to Lucy later and she said that Elaine, that wrote the book “Breaking The Viscious Cycle”, thought grains to be the worst.  Here I was thinking it would be sugar.  Lucy said with moderation, a little sugar would not hurt possibly, but to test it.  She also recommended trying potatoes.  (Then I remembered one thing that is legal, you can have a couple of pieces of bacon with sugar once a week.) 

So, our next food to try was sweet potatoes.  Justin has now eaten about 1/4 of a large sweet potato 5-6 times now and has not had any trouble or signs.  I have put butter and cinnamon on a bakes sweet potato.  I have made him sweet potato fries. 

One thing we have not enjoyed about this diet is when we are out or when I do not want to cook, there is pretty much nothing to drive thru and get for Justin.  I had read the ingredients in Chick Fil A’s grilled chicken breasts and their new grilled chicken bites.  There is sugar in their marinade.  We decided to try a salad there with the grilled chicken breast (he uses honey and lemon juice there for the salad dressing).  He had no reaction.  He has since eaten the grilled chicken bites and recently lightly dipped them in the polynesian sauce.  He has done great with this!

Justin LOVES salads!  Lucy had mentioned to me that the Paul Newman salad dressings might be good to look into.  So I bought the light balsamic and he has been eating that.  He has done great! 

For six months now, Justin has been looking forward to and counting the days to his “One Year” date!  He noticed it was around Easter!  So he has been asking for a chocolate easter bunny!  I did not think this was a wise decision, but I figured if he had a reaction he wouldn’t ask for it anymore.  Justin got a few one inch chocolate pieces (bunny, chick, egg) in his easter basket.  They were all gone within 30 minutes!  Justin ate all of the chocolate Sunday morning, and today is Thursday.  He has been to the bathroom everyday and has seen no signs.  Needless to say, he is excited!!!  (Please keep in mind that it was NOT a whole lot of chocolate for a person used to eating chocolate.)

I think this gets us caught up with Justin’s progress.  I will keep you updated as we try new things!  I hope this helps!  If you have any ideas, please email me!

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6 thoughts on “AFTER ONE YEAR!!!

  1. Hi Paige, what a great blog. Thanks so much for taking the time to update us. We too have made the year and unfortunately I have been too slack on Austin. He has gotten it in his head that he can cheat on the diet. So far, we have not really found any alternative to the diet, but based on your experience, I think we are going to try potatoes. Your blog was very helpful about the grains, because I was about to introduce some bread. Austin has really gotten to the point where he is sick of the “diet” and I need to find something to offer him as a reward for staying close to the diet. I’ll let you know how it works. I also let Austin read your email and he was already

  2. sorry, I must have hit the wrong button. Anyway, thanks so much for the blog. You really are such a helpful resource for all of us moms and dads trying to get the benefits of SCD. Please keep posting your and Justin’s experiences. Thanks Angie B.

    • Thank you, Angie! I cannot tell YOU how much I have appreciated all your help throughout all of this! Listening to me and keeping in touch! I could not have made it through my first year without YOU, Kathy, Wendy and of course, Nurse Angela!!! I cannot stress to other parents how important it is to find someone and keep in touch with them while on this diet!

  3. Thanks everyone for your posting! It is very reassuring as tomorrow marks our 10 wk on the diet and seeing amazing results with both of my kids. Can’t wait to reach the goal of 1 yr! Right now we are on baby steps but starting in 1 wk to take steroids away and hopefully this time we can stay off them. Thanks for sharing!

  4. This is such great news Paige! I am so glad you have decided to share “After one Year” with everyone because this is the area that we struggle with the most…patients are saying, now what? and we really have nothing to reference. Like you said, all kids will be different, but this is reassuring for those nearing that one year and motivational to those who have a long road ahead 🙂 You are THE BEST! and all of you and the kids are why we keep doing what we do!! I love working with all of you…I look back a year ago and think of how clueless I was and how much all of you have helped me do my job better! Thanks so much for everything!!

  5. Hi, I found your blog when looking for a recipe for flatbread. Very interested in your “after 1 year section”. I had been wanting to add rice but after reading your experience I will probably hold off. My son is 15 and has been on the SCD for crohn’s for about 4 or maybe 5 years. We are 100% except when we travel which is frequently. Typically when we go on a family vacation or if he is on a youth group weekend he eats a fairly normal diet. We then suffer a few weeks of diarrhea but to Ethan it is worth it. I am always afraid that he won’t go back into remission after a prolonged “cheat” but we have been lucky so far. I leave it up to him but he doesn’t like to stand out or be different and I have to allow him to manage it and make choices for himself. He also takes LDN which seems to help as well. We have avoided scopes – I don’t think he has had 1 for at least 4 years. I am very curious to see what he looks like on the inside but his symptoms while on the SCD never seem severe enough to warrant putting him through it. As far as adding other foods… University of Mass at Amherst is studying diet and crohn’s. I heard an interview with the nutritionist and they used a modified type SCD but did allow rice, quinoa, miso, oatmeal and maybe even potatoes. The nutritionist said that it was individualized to the person and didn’t make any general statements. The study results showed decrease in symptoms in all 10 participants. I guess that is why I had been feeling hopeful about rice. Maybe we will start with potatoes at some point. Anyway thanks for the blog and I look forward to trying some of your recipes!

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