10 years of SCD: Tucker Sweeney shares lessons on balanced life and health maintenance

Tucker Sweeney became a role model for SCD dieters after publishing his book Two Steps Forward, One Step Back: A Journey Through Life, Ulcerative Colitis, and the Specific Carbohydrate Diet. The book became an important motivational tool in our house in our first years of SCD. Our young son found it easy to identify with the cool sporty dude in the book, who struggled to adhere to SCD and finally triumphed. Us, parents, found hope in reading how the diet enabled Tucker to resume normal, healthy life.

Tucker is an avid outdoors enthusiast, alternating between rock climbing, backpacking, skiing, and traveling. A diagnosis of ulcerative colitis at the age of 23 threatened his life and his ability to do what he loved most. A tough period of fighting symptoms and trying different medications led him to commit to SCD in 2007, which brought relief and allowed him to resumed his active outdoors lifestyle, complete his studies and get married, all while cooking and eating SCD.

The candid, straight forward story, brought hope to many readers. As a mentor to hundreds of SCD families, I always recommend his book to young people who are dealing with IBD. The book is also a ‘must read’ for families of IBD kids and teens, and can be inspirational and transformational for those who are reluctant to adhere to SCD. Tucker fans will be delighted to get this update about his life today, and new SCD users will be intrigued and seek his book.

Through your book, you became a role model for many young adults that are struggling with IBD. With the perspective of the 10 years that have passed since, what would you say to a young person who is having a hard time adhering to such a strict diet?

I think you have to want it. You have to want a better life. To not be sick anymore, and to feel in control again. I think the more stories of success from SCD people we see the more it seems worth it and obtainable. Its not such of a gamble as it was before when there were fewer people talking about it. I think the next step is having the medical field start offering the SCD as a viable option for those diagnosed and I think we will start seeing more of that as the studies continue to gain attention. There are still plenty of people I meet though who are just not willing to change their lifestyle and eating habit around to successfully follow the diet, and that is OK. We all have our reasons but for many it really takes hitting rock bottom and having the impact that there is not going to be an easier route to get better. For some, meds will work well enough for people to get by living in decent health and that’s great. I was not one of those and I saw the writing on the wall that I either bucked up and took the diet head on or suffered the consequences. You have to want it for yourself and have the support to make it happen. Family support can be a huge factor in the success of the SCD but at the end of the day it has to be for you. Like I said in my book, dealing with the SCD was never as hard as dealing with UC when it was raging out of control. I think some are just not at that point yet.

At the end of the book, you were a newlywed young man. What is family life like for you these days?

Life is busy these days! Katie and I now have two young girls, one four the other almost two. We moved back to northern Idaho and I built our house here in the country. Big process but very rewarding in the end. Being busy with family and work has been good for my disease as it takes my attention away from myself and puts it towards others. I think those of us with IBD diseases tend to be hyper focused on all the symptoms we have or may have. Sometimes to the point that it can make our symptoms worse. I feel lucky though that my ulcerative colitis (UC) was under control and that I did have the time to put into all the learning and cooking that I had to dive into. Finding the time to do learn all that while having a family would be tough and I admire the people that are doing it. No matter what you have going on though, life just keeps going.

One of the most inspiring aspects of your book were the descriptions of the active outdoor lifestyle that you maintained while fighting UC. The images of your hikes while eating SCD fueled my hopes when my family was still new to IBD. Do you still hike and climb?

Oh for sure! I still get out to hike, climb, bike, and ski whenever I can. I actually have a career now leading young adult students on outdoor adventures and activities. Your passions can turn into your job if you want it too! I think leading an active lifestyle will always be part of who I am and something that helps me to lower stress and remain healthy. If I sit around for more than a few days my back starts hurting, my energy goes down, and I just don’t feel as well. When you are in the thick of this disease you have to keep doing the things you love so that you can hold onto those positive moments of your life. Still getting out on adventures, even if I was sick, gave me a respite from the constant reminders that I was ill. Made me feel normal and gave me something else to focus on. You have to make those moments a priority at times otherwise the disease can envelope you entirely. There has also been more and more research that is highlighting the positive effects of exercise not only on gut health but also on mental health. Most who deal with IBD know how strong of a correlation there is between the brain and gut.

Do you still maintain SCD as the primary treatment for your UC?

Yes, for sure. I still eat primarily SCD and have no regrets about doing so. After 10 years on the diet I have been able to be more easy going about making sure everything is fully legal such as, salad dressings or simple sauces at restaurants. At home though I still eat plain SCD. It is pretty ingrained in me I guess and just normal now. Cravings are also very, very minimal as is the hunger that I used to feel. Maybe it’s just me getting older but the diet is much easier to follow now. I would also say that the longer I have been on the diet the less special foods like muffins, cookies, breads, etc. I end up eating and preparing. Less cooking is just easier for me and I don’t crave those things as much. More or less we just cook regular SCD meals and eat the leftovers. Yogurt with honey, blueberries, and walnuts is still a total staple. One bowl in the morning/afternoon and one in the evening for a dessert, something about it I still crave. Trust me, get two yogurt makers or a system that you can make a gallon at a time, It’s totally worth it.

Have you added or experimented with any other treatments, supplements or medications?

Yes, I have gotten more and more at peace with doing things that help and doing them at the first sign of bowel trouble. I used to fight and struggle with the idea of needing medication or other treatments to make it through. I guess I felt bad that I needed help and that I couldn’t fix things by myself. I have been on a low dose generic version of Colazal medication for over a year now after I almost had a flare up a while back. I decided to keep with the low dose and I have just felt better. Does it bug me that I take medication? Yes, but if I feel stronger and healthier that should make the decision, not my ego.

Another treatment that I have used in the past few years is fecal transplant from a healthy donor. This has been a real breakthrough for me and has allowed me to finally gain back weight. For me, it has been the final piece of the puzzle to get to a place where I really don’t feel like I have UC at all. Now, its not that I was in bad health before and I have not had a flare up in 8 years but I did still experience a low-grade feeling of inflammation in my gut. My side would hurt at times, my back and joints would hurt here and there, and I would have near flare up episodes that would really scare me. After a consistent round of transplants over a few months I really felt like I gained the upper hand on this disease. Another fantastic thing I learned was that if I was struggling and feeling like a flare up was really coming on I could do one transplant and basically feel completely better by the next day. Really powerful stuff. I used a family member that was not blood related and had been screened for multiple diseases and conditions. We prepared it at home following Dr. Brody’s online instructions and transferred it using an enema bag. I also found that a 50/50 solution of saline and water worked the best.

Other than that I only take a vitamin D supplement, which has also been found to be related to the factors of IBD diseases. I used to take a multi vitamin but now I feel that my varied diet supplies all the vitamins and minerals I need.
Your biological father was also diagnosed with UC, and the book describes how he also adopted SCD. Is he still maintaining the diet?
He actually had a very strange encounter with UC that I am still trying to figure out myself. He was diagnosed after having a really severe flare up in which he was basically reduced to skin and bones, put on prednisone, and told he most likely suffer from this disease the rest of his life. He got on the SCD and came around very quickly. After about four months on the diet he was pretty much back too normal and had stopped taking the prednisone after about a month. At this point he started slowly adding in illegal foods, yet had no adverse symptoms. He has been fine ever since and does eat very clean and healthy but does not follow the SCD. Who knows why his brush with UC was so different from mine…

You ended the book with important lessons on balanced lifestyle and stress management. How do you maintain balance and mindset today, while managing the busy life of a young active family?

Well, for one thing having balance is much easier when you are not chronically sick. Keep going! You can get to that place I promise! Life is just normal now, yet I feel like I have had to tune into things much more than some people, which I think is a blessing. Instead of letting stress eat me alive, which it would, I have to stop and take a U-turn if its something that is going to hang around long enough to effect me. The decisions are made simple and by the fact that I know if I let something get to me to much or eat something I shouldn’t for too long it will have a consequence for me. It goes back to the idea that SCD is a lifestyle change and not just a dietary change. I know I would not do well at a stressful job so I got a job that is relaxing and keeps me healthy. It’s the same idea as the fact that I would really struggle if I had to be traveling all the time without somewhere to cook. It would really have a consequence for me so I have to limit it and think ahead.
It is really tough at times to maintain balance and to keep up with all the cooking and prep work the diet demands. But…what are the other options? So you just do it, you get quicker at it, and you make it something that just happens, and sometimes, just sometimes you might find you enjoy it.

When we chatted about the challenges of going out to eat we both laughed and shared a similar conclusion. Most of the time after eating at a restaurant we leave with a sense of “it was fun socially, but my food at home is much tastier…Simple SCD meals are so delicious, it hardly feels as restriction or depravation.” What do you like to eat these days?

Well, I feel like things most likely haven’t changed much since I wrote the book and still like many of the standard items I did before. Eggs in various ways for breakfast, sometimes homemade waffles with butter and honey, yogurt, always yogurt, fruit, and yes coffee with coconut milk. I have found that actually espresso or a homemade coconut latte is way easier on my gut than a regular cup of coffee.

During a flare definitely a no, no but the other times for sure. Lunch is usually pretty small and more snack like. Usually yogurt if I didn’t have it for breakfast, nuts and cheese, apple and cheese or peanut butter, a simple salad maybe. Dinner usually consists of a meat main, large serving of vegetables and a salad. For dessert its usually yogurt again or if I feel like it I will make some cookies or coconut ice cream. The hard cider scene has also really exploded and there are tons of high quality ciders that have nothing in them except apple cider and yeast. I found that for me hard cider was much easier on my gut than wine or anything else. I love making it myself as well, which is a fun hobby.

At work I have to prep for a 30-hour shift due to having to sleep at the school one night. This means I bring a lot of food and I have to cook for a solid two hours before the shift. I usually just cook a standard dinner but double it then bring lots of various fruits, a whole container of yogurt and honey, and anything else I can rustle up. I usually get a bit stressed about it before hand but it always comes together and my work is fully equipped with extra refrigerators and a full kitchen that I can utilize.

Katie and the kids eat SCD about 60% of the time these days. That would have been very hard to deal with when I was first starting out but now I could care less. Our larger meals we usually eat together and are SCD but they may have rice with theirs while I leave it out, etc.

In 2011 You wrote: "I tried medications, yet they all worked then failed to work. Asacol, Colazal, Prednisone all of them provided only temporary relief from UC. I felt I was in a dangerous downward cycle that was leading me towards death. Having surgery to remove my colon was no longer a scary thought but instead an envisioned paradise where pain was no longer present.” This is an emotionally heavy load to carry. You are more experienced now in managing IBD as an integral part of your life. What is your personal guiding philosophy now about living a full happy life while managing IBD ?

My philosophy is that this is who I am, this is the way I get healthy and happy, and my situation could be a whole lot worse. The longer I live the more I see that all of us have something to deal with and its not what it is that matters, its how we choose to deal with it that truly defines us. Give in to trying lots of methods to heal yourself and do them early but please do your research first. Nothing will be a quick fix and neither will the SCD or IBD.

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11 thoughts on “10 years of SCD: Tucker Sweeney shares lessons on balanced life and health maintenance

  1. Natalie

    I read this book early in our SCD journey and I was so thankful for it! There's a lot of negative info about diet in general online and it was such a huge relief to learn that it really could work! I really identified with his mother - my son was only age 4 at the time, but there's such a special mom/son relationship that the book really showed. Thank you for your bravery and work to write the book for so many to benefit!

    Reply
  2. Kristin

    So happy to have an update! I've often wondered about Tucker and how he is feeling today. Would love to hear from his Mom, too 🙂 Thank you!

    Reply
    1. Carol Thompson

      Hi Kristin!
      Thanks for inquiring about me!
      These past 5 years since Tucker's book was published have been peaceful and I rarely think about Tucker having an IBD anymore. It used to fill all my waking thoughts and was a huge part of my life when he was struggling with his health and needed so much assistance from me. I am still in awe at Tucker's excellent health these past 8 years and we all try to follow his example of eating as healthy as he does. He has a 10 years younger brother and they are often mistaken to be twins as Tucker exudes such a youthful appearance which we attribute to his diet.
      I love to garden and giving Tucker's family vegetables and lots of eggs from our chickens is pretty much my main contribution to helping Tucker maintain his diet these days. My husband enjoys hunting and makes a lot of venison jerky for Tucker and his family which they love and it's a great portable travel/ camping food for SCD followers. I also can and freeze lots of homemade venison or beef vegetable soup for Tucker to grab in case he needs a fast meal.
      When my granddaughters come over to play with Nana and Papa they love to cook (it's a huge family fun time together at their house) and we try to always make cookies/muffins or frozen yogurt for Daddy to eat.
      I have to admit while reading the Gut harmony interview with Tucker I was in tears as it brings up so many scary memories yet I was also weeping for joy because Tucker is living a life neither of us could envision 10 years ago. Thanks to the SCD and Tucker taking control of his health in many different ways as he mentions in the interview.
      Take care, Carol Thompson ( Tuckers mom)

      Reply
  3. Cindy Frei

    This is a great piece, Tali. Thanks so much for posting. I am going to send it on to my son Caleb so he can get a sense of what life can be like 10 years into the diet. As a kid, I think its hard to imagine staying on the diet forever, but Tucker makes SCD feel very normalized and just down right healthy!

    Reply
  4. Sara

    Proud of you for making a change in your life that lets you control your disease, not it controlling you. My daughter will be on it for 4 years now and, although we have had some major flare set backs, is almost proud of her diet..who knew! :). We moved From MT to Norway this year and, although more difficult to find foods, it has worked here too! Thanks for inspiring us! ❤Sara

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  5. Leah

    What a wonderful interview and great inspiration for a newer IBD mama in this journey. I've heard this book referenced and recommended many times and I need to pick it up. So awesome to hear about life years later. It's so hard in the early days to envision life in the future and maintaining the diet. Love hearing a positive story. Inspiring to keep taking one day at a time.

    Reply
  6. Wendy King

    A huge thanks to Tucker and Carol for sharing their story and this fabulous update. My daughter started SCD in July and four weeks into it she was still doing very poorly. Her GI's response was SCD doesn't work for her, but your book had prepared me for a tough first year and made it easier for us to accept the need for a course of prednisone. Nine months into SCD she is still struggling with inflammation but she is SO MUCH healthier than she had been, and able to play some fierce soccer this spring, even while not in full remission.
    I'm intrigued by your job. I wonder if you'd be able to lead a week long summer outdoor expedition (camping/hiking) for high school students following SCD. It could be such a powerful experience for outdoor-loving teens who are coming close to leading independent lives.

    Reply
  7. Missy

    Thank you for this post and for your response, Carol. As the parent of a 16 year old boy, your book helped me immeasurably. I return to it frequently when I am frightened, and it never fails to reassure me that things are progressing even though the progress is not always in an upward arc all the time. We rejoice at your healing and success and you are both an inspiration to many.

    Reply
  8. Deirdre

    Tucker: I ordered your book just a few short weeks after our then 16 year old daughter was diagnosed with Crohn’s disease. I read it cover to cover that afternoon and then reread it from time to time over the past two years. So many Internet stories of SCD followers say things like “I instantly felt better” and “I had no inflammation at all after just 4 weeks!” etc. Had I not read your story, I’m certain that I wouldn’t have had the courage to continue with the diet as the first nine months were so difficult with our ups and down. The BTVC book says that the diet may not work for everyone so without your book I may have thought that my daughter was one of those people Elaine Gottschall was referring to. I am so grateful for you and your mom’s courage to share the journey you took together.

    I flipped to your timeline on pages 14-15 countless times over the past two years. It was helpful to compare the ups and downs you had with my own daughter’s experience. We knew the SCD was making a significant difference in her healing even though everything wasn’t perfect yet. It will just take time and everyone’s journey will be different.

    The fact that you continued to pursue your climbing, biking, hiking as you healed was inspiring for my daughter who has always been an incredible athlete in multiple sports. (She read your book too.) She had been playing on an elite level club soccer team in our state at the time of her diagnosis. Although her fatigue, due to malabsorption, was difficult at times she still continued to play varsity soccer and tennis over the past two years and led both of her high school teams as captain during her senior year. We were also inspired by your latest update about your current outdoor activities.

    My daughter is now 18 and will be graduating from high school in just a few short weeks. She has followed the SCD strictly for 21 months. She plans to pursue a Ph.D. /MD in immunology and will research a cure for IBD.

    We wish you a lifetime of good health and happiness.

    Carol: I am so grateful to you. I drew on your strength as a mother over the past two years since my daughter’s diagnosis. I reread many parts of your story at times when my mind started to fall deeper into despair by this chronic health diagnosis. Although my siblings and mother are an amazing support system, it is just so hard to explain to them what it is really like to watch a child suffer with IBD. I appreciate your honesty in retelling your experience. I cried with you. I felt your sheer exhaustion too. Your story gave me and my husband such hope that our family could also endure this incredible trial and emerge in the light again. Your additional details about your son Dylan were especially helpful to me as well. We also have a younger teenage son who is an athlete and I debated on whether our whole family needed to strictly follow the SCD. For the most part, our nightly family dinners are all SCD compliant but we chose to allow our son to eat a healthy and well-balanced diet without restricting him from whole grains or dairy. He is in awe at his older sister’s dedication to a strict SCD.
    _____________________
    Thank you both for your book and this latest update. Although I have read hundreds and hundreds of hours about Crohn’s disease over the past two years, nothing has been more important to read than your story of hope. Hope is such powerful gift! Thank you to Tali Guday for this interview and for making it possible to me to communicate with both of you like this.

    P.S. Our whole family absolutely LOVES your caramel nut ball recipe!

    Reply
    1. Tucker

      Wow! Don't really have a worthy reply to all your kind words...thank you. You too are an inspiration and your daughter no doubt sounds In the right head space to take this obstacle head on and overcome it. Keep with it and you will get there.

      Reply

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