Tuesday, August 9, 2016

Getting off Remicade & SCD

***We have shared over the last months that Ryan is off Remicade and working with a specific diet to manage his Crohn's.  Here is a small glimpse into our story and we will happily answer questions in the comments***

From March 2012 to August 2012 Ryan was in a steady health spiral down hill.  Our doctors told us he was in a severe Crohn's flare, was slowly starving to death, and had one of the most devastating and unique cases of this disease they had ever seen.  He had lost 50+ lbs in about 4 months and was a shell of a person.  Pain, infection, surgeries, hospitalizations, and drugs defined our lives.

Between the amazing care of our GI surgeon, an ileostomy (which was reversed in June 2015), and bi-monthly Remicade infusions we were able to see Ryan's health return vigorously!  He gain backed weight, put on muscle, developed strength, and we saw his Crohn's go into remission.  

That was thanks to the amazing advancements of westernized medicine and doctors!  Never, ever will be take those gifts for granted.

Now here we are 4 years later....
..and Remicade seemed to be failing us.

Earlier in the year we started to really notice that Ryan had been steadily developing more stomach aches, nausea, headaches, and he had been diagnosed with many spots of skin cancer (linked to Remicade).  Despite a healthy lifestyle and diet he just didn't feel "good" anymore.  A colonoscopy in 2015 confirmed he was not in a flare and his intestines looked healthy.

It's hard to find much of anything on the Internet or from doctors but we were curious if all this was linked to Remicade so we started noting his symptoms more closely.

We knew the risks of Remicade before Ryan's first infusion but we were really starting to see more of the side effects now.  What worried us was that his day-to-day health was diminishing as he was on the couch many days of the week.

We also feared long term, more serious cancers though and that was a driving force to making our next decision (Lymphoma is an infamous example for Remicade patients).

All that to say, I wanted to properly emphasize that we have been THANKFUL for the Remicade infusions and how they initially restored Ryan's health but it's not a perfect drug. 

It was because of the negative side effects and long term repercussions that we finally said, "Let's try to get off Remicade."

I know for sure someone reading this will say, "Why would you get off the drug that made you better?"  We said the same thing!  

It's impossible to know if Remicade is keeping your Crohn's in remission or if your body has come out of the flare and can manage without meds.  It's also frustratingly difficult to "wean" off Remicade as your immune system can build up antibodies to the medicine making it impossible in some cases to go back on the drug.  It's pretty risky to get off as your might lose the option as future treatment.

But we are people of faith and really felt that due to our doctor's (limited) insight, research, personal recommendations from friends who had success through diet, and prayer that stopping Remicade infusions was a wise choice for us.

We were led from there to research nutrition and diet.  And that's where our new chapter of health begins.

Gideon helping us shop for SCD.  You can see peanut butter, applesauce, peaches, eggs, almond flour, coconut oil and more.  All are SCD "legal"

Ryan's best friend Kyle also has Crohn's Disease.  This horrible autoimmune disorder is what brought them together actually.  Kyle has been able to manage his Crohn's (through so much effort and dedication) by way of the Specific Carbohydrate Diet (or SCD).  He has been singing its praises for months and now it was our turn to try it out.

And so far the SCD has been incredibly positive and the right choice for Ryan's health!  In a nutshell, SCD aims to reduce inflammation of the intestines through specific food introductions and restrictions while focusing on an overall diet of anti-inflammatory, healthy foods. 

Ryan received his last infusion of Remicade in April 2016 and began the diet shortly after.  We did not do a weaning process, his doctor just had him stop infusions "cold turkey".

And his stomach aches have astoundingly decreased!!

If he strays from the diet (which is admittedly restrictive, but effective!) that is when he has pain.  His headaches have resolved and we will await his next dermatology appointment to see improvement in his skin related to cancer.

It really seems that Remicade is what was starting to hinder him, even though it has been such a positive part of our story early on.  You just have to stay flexible with Crohn's!  

We realized that nutrition and diet must be at the foundation of a gastrointestinal disease so that's why we went this route. It's worked for us and we hope it works for you!

A small glimpse into Ryan's meal planning-lean meats, specific fruit, eggs, veggies, nut butters, honey, and more are what make up his diet.  It is delicious and he eats well!

There are exhaustive resources, meal plans, how-to's etc other places so I'm not going to summarize or re-word what's available out there.  SCD takes effort but you can have a delicious varied diet especially after the hard work that the initial weeks of anti-inflammation take.  Here are our best resources that we use daily for the SCD:

We wish you good luck if you decide to try this!  It's drastic to follow the SCD whether you chose to stay on pharmaceuticals or not.  But we are willing to do everything in our power to make sure Ryan has good health now and in the future.  It's so important to us.

Let us know what you try, if you've tried it, and your own experiences with getting off Remicade and/or SCD!


  1. Awesome! Do you eat the same diet with him or do you cook differently for yourself?

    1. We eat pretty much the same except I add in grains or dairy sporadically. I might make quinoa or rice to go with our dinners. And I do add cheese and some dairy in for Gid and I. But overall I would say this diet is delicious and very much doable for us both!

      There are "stages" of this diet so that's something important to keep in mind. I didn't do the "intro diet" which is SUPER restrictive and meant to take down inflammation and re-set the gut. Being a breastfeeding mama, I couldn't get the calories I needed from that particular stage.

      But now that we are several months in here is a samply day of eating for us:

      Breakfast: veggie omelettes for us both, coconut milk/spinach/berry smoothie, and I add in buttered toast for Gideon and I as well as cheese on our omlette

      Lunch: Leftovers from dinner plus apple sauce, veggies and guacamole, baked fruit, Justin's honey peanut butter packet, and a larabar.

      Dinner: our favorite "chicken mash" which includes chunks of browned chicken, sauteed with artichoke hearts, bell pepper, fresh garlic and topped with pieces of bacon. I would probably make quinoa to go with this for me. Dessert is SCD brownies (baked peanut butter, egg, honey, baking soda) and a small glass of red wine

  2. This is incredibly encouraging! Thank you so much for sharing.

    I have UC and I want to get off Remicade eventually, as well. I agree that it's a miracle drug when someone is in a critical situation and really needs a strong intervention - Remicade is the reason I didn't lose my bowel at the end of last year. But it's certainly not a cure nor a long-term solution, unless someone is ready to be dependent on it for life. But even then, it's still a drug that messes with our biochemistry. I've been looking for accounts of people who have managed to come off it successfully, and I have to say you've given me a lot of hope. My GI is adamant that I'll "be on it for the rest of my life" and that I'll have UC until the day I die - even if the latter part is true, I believe autoimmune conditions can eventually be managed through diet and lifestyle (once the emergency-type situations have been calmed), even if symptoms and flare do make and appearance from time to time.

    As someone for whom Remicade has worked beautifully, and considering the state I was in 8 months ago, I would still rather endure some symptoms and flares from time to time rather than have to commit to Remicade forever.

    I don't mean to sound naive, of course. I so say all of this with the assumption that I would have success somehow managing it through diet...

    Might I ask what the level of severity of Ryan Chron's was when he started Remicade? I was told my UC was (or is) pretty much as severe as it could get - I was already scheduled for surgery. My hope is that even with that diagnosis, I could still muster some faith that I'll get off Remi one day...

    Again, thanks for posting this!! :)

    1. Hi Victoria!

      Ryan's Crohn's Disease was also as severe as it could get. He was down 40 lbs, had fissures, fistulas, abcesses and had a PICC line in receiving TPN. He was wildly sick and was hospitalized on a dozen meds as they tried to get his health back. We actually went through with surgery to put up his ileostomy (reversed 3 years later) and started Remicade within the week. That combination is what drew him out of one of the most severe flares our clinicians had ever witnessed.

      I need to post an update on Ryan's journey. He was successfully Remicade-free for 1 year. In the last few months we have seen his symptoms re-flare and we were not able to manage it with strict diet alone. Since April 2017 we have seen increased blood, diarrhea, stomach aches and even a fissure re-starting to form. Ryan is starting a drug called Stelara next week (September 2017). It's a one time infusion and then a home injectable for the ongoing doses. Its safety profile is even higher than Remicade and we feel hopeful about it!

      We are so optimistic you can get off Remicade, Victoria and even be pharmaceutical-free for life!! It's very possible and we have two dear friends who are seeing this reality. If that is not what can happen for you, take heart that the western medicine world is so advanced and we are THANKFUL to live in a time where abundant and diverse medicines to manage Crohn's and UC are available.

      We chronicled our entire Crohn's journey on this blog and at http://reachingforfringe.blogspot.com/

      Private message or comment with more questions!! So happy to hear from you :)



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