Hello, my name is Jo Lynn Word. My daughter Lauren Word, age 20, was diagnosed – after a year of frustration – with moderate to severe Crohn’s Disease throughout her colon and terminal ileum in August 2005, on the first
day of 9th grade. At diagnosis, she was 14 years old, 5 feet tall, and 68 pounds. Her bone age was 11 – so obviously significantly under developed. One of the greatest concerns was that she might not ever reach her growth potential. After much discussion, research, anguish, and fear, we made the decision not to rush into Remicade and instead chose an 8 week course of prednisone, and started on 6 MP. Our family had become primarily vegetarian at the time – something we had done trying to help our daughter as we did not know what was wrong with her but since her troubles were digestive, we assumed there was something wrong. We did not drink cow’s milk, eat dairy, or red meat, so we were a bit of a challenge to prevailing diet beliefs of the time for the best growth, but I spent untold hours of research trying to find the healthiest diet I could for healing and growth. Lauren began taking probiotics, and since she was 14 and in my house, I actually got her to take a teaspoon of high quality icelandic fish oil twice/day for over a year. I cannot believe in all my research, I did not run across the SCD, but I think it was because I was researching scientific research and alternative treatments, and since SCD was, and still is not, mainstream or accepted as a treatment, I did not find it. However, we had found Hallelujah Acres, which is extreme in its veganism, but contains valuable information for healthy food. So, we took all the parts that we strongly felt were an aid to healing,i.e – no white flours, restriction of sugar, eating plenty of fresh fruits and vegetables, fresh squeezed juices, and added organic meats, some dairy, and proceeded.
Long story short, Lauren’s healing and growth was nothing short of phenomenal. Dr. Lewis said her growth was unprecedented among his patients. Within weeks, the pain was completely gone and she had gained 11 pounds. Within the year, she had grown 3 inches and gained another 10 pounds. She stayed in remission for 5 years. When she graduated from high school, she was 5’7 1/2 inches tall and 120 pounds. A long way from that little waif.
I am 100% certain that her diet and lifestyle helped keep her in remission as well as the 6 MP. During the 6 MP years, she had shingles, pneumonia, and countless other assaults to her immune system but the Crohn’s stayed quiet and she thrived. She was only on 6 MP for 2 years, so she was off for 3 before the first symptoms of a flare began. She went off to the University of Georgia and thoroughly enjoyed the meal plan with 24 hour dining hall service. She ate pizza several times/week, enjoyed waffle Thursdays, and midnight desserts several times per week. In case, you are wondering, no, she was not drinking alcohol. She made that decision in the very beginning. So, 9 months of processed foods and sugar undid 5 years of remission. The pain, diarrhea, and extreme fatigue were back.
We were able to get her feeling better over the summer, but she began her sophomore year, with a new symptom- anemia. She felt like 9th grade all over again as once more she had to stop sports she loved and drop out of extracurricular activities as going to academic classes took every ounce of energy she could muster. She is an honor student double majoring in Anthropology and Art History with a French minor. The workload is heavy. She was living in her first apartment and trying everything to get her symptoms in check. To help her, I researched untold hours again and finally decided she had to go back to the basics and started taking her a variety of healing juices from Arden’s Garden. She ate only basic meals. I encouraged probiotics and fish oil – not sure how much of that she did. She started taking a daily Citrucel and kept Immodium close at hand. This all helped get the pain and symptoms under control so she would not miss classes, but even though she was also taking iron supplements most days, she did not make much improvement on the anemia, and couldn’t get her stamina back. More than once, I thought about just taking a short term lease and going up there and cooking for her. Instead I drove back and forth a few times with supplies. After several weeks, she decided that she needed some help and did a couple of short rounds of Flagyl – which helped A LOT with her symptoms got her through Fall semester. But symptoms returned and Spring semester continued to be an up and down battle against symptoms, but Lauren is philosophically opposed to major meds and just wants to fight it on her own. As the spring wore on, she was winning the daily battle but it was obvious she was just keeping things level but not really making big gains.
She was scheduled to go to Italy for 10 weeks on an Art History Study Abroad and I was getting so afraid she wouldn’t be able to go and would have to come home early. After a pill cam (5 days before her departure ) revealed significant inflammation in the terminal ileum, Lauren had a wonderful conversation with Dr. Lewis. After 6 years, she and I both had to accept that she has a chronic disease that is not going to go away and no matter how stoic she is, the inflammation was currently winning. Perhaps her immediate return to robust health after her first diagnosis and 5 years of remission, allowed us both to hope and then actually believe for a short time that she was cured. At any rate, she had an iron iv infusion to help the iron levels and Dr. Lewis gave her a game plan for making it through the summer. Although concerned and uncomfortable with her continued opposition to medications, he understood and respected Lauren’s desire to fight her inflammation with diet and lifestyle and told her of this study that had just begun but needed to confirm there was not age limit as she had just turned 20. There was not and it was decided that she would begin when she returned from Italy as she was obviously going to enjoy pasta, bread, gelato and all the wonderful, scrumptious Italian foods.
In June, early in her trip, she was forced to resort to a 10 day burst of prednisone and later a 10 day course of Flagyl – which both did their jobs and allowed her to enjoy her trip. The last month, she focused on all the fresh fruit and vegetables available from local markets and began to skip the bread and pasta and limited her gelato to several times a week but not daily, and found that while she still had some crampy pain just after eating, it never lasted more than a few minutes and she was able to forget about it. She arrived home on August 10, 2011 and had a pill cam for the SCD study and labs on August 12 and began the diet on this date. Classes began on August 15. She had gained 12 needed pounds in Italy and her anemia is all but gone, the side pain after meals was still nagging but not unbearable.
So, that is how we got here. My situation may be different from other Mom’s on this site since Lauren attends the University of Georgia is not living at home. I so wish we had known about this diet while she was at home as it is difficult for a college student to prepare home cooked meals routinely. I have made a variety of meals to freeze and taken them to her in single serving containers but mostly she is doing this herself. She is discovering what she can eat at a variety of her favorite restaurants. She is blessed and fortunate to have her younger sister, Stephanie, only 14 months younger, there at UGA with her living in a separate apartment but in the same complex, who is helping her grocery shop and cook and is on the SCD with her. Stephanie and I both went on the SCD in July to learn as much as we could before Lauren got home. I am SO grateful that Stephanie is there and can be the moral support since I cannot be there. (As an aside, I feel better, sleep better, and have much more energy. I have also lost a few pounds – J )
This is the beginning of Week 4, Lauren is experiencing frequent, uncomfortable gas and bloating and still has pain after eating. She has not cheated at all and at the moment is frustrated. I have found a couple of websites of people who are 2 years post SCD initial phase and they do discuss these problems. I was out of town all last week and will dig into it this week and will share what I learn. I do believe that the study guidelines should include what to expect in terms of the awful detox headaches, bacteria die-off symptoms, and encouragement to continue – which is why I am so thrilled about this blog. I hope that new families just beginning will not have to do it the hard way and I hope to gain insights from other struggles and solutions.
In some ways, Lauren’s way of doing this diet is much easier that the approaches and challenges for younger children that we have read about. She basically excludes anything in cans, boxes, or packages that isn’t fresh or frozen natural food. That eliminates the frustration of reading labels. Since she is an adult, she does not need to be placated with alternatives to everything as she can limit herself and is accustomed to eating less of the SAD diet (Standard American Diet.) Her biggest challenge in the beginning was getting over the addiction and desire for sweets considering that she had just spent 10 weeks enjoying gelato. Being a junior in college, it is not easy to be around people who constantly bake desserts and love to eat at places with French fries and whose favorite hang -out is Yoforia. In an effort to address the sweet tooth and lack of bread in the first week, she made batches of almond flour muffins and fell in love with focaccia bread made with almonds. Word to the wise, too much too fast causes gas, bloating, and pain. Apparently, nuts while good for you, can be big inflammation aggravators until later in the diet. She has not had these for nearly 2 weeks but is still experiencing gas and pain. At this point, I really don’t know if it is something else she is routinely eating or if her flare is stronger. Reading tells me that it is possible that she is still acclimating to the diet, but since she is not on any medication and we know she had a lot of inflammation in the summer, we don’t really know what to do. I have encouraged her to return to the intro diet for a few days, but I don’t know what she is going to do. I cannot keep a food diary for her since I am not there. I do keep my own log of what she tells me but we go several days without talking and I don’t interrogate her about her food and symptoms – although she might feel like I do. I know that up to this point, she is SO busy with her class load and food preparation that keeping a food diary has not been a priority for her. Her chiropractor has suggested cutting back on her banana consumption. Lauren likes them firm not ripe with spots so I bet that is part of the problem.
I really have to tread lightly as a Mom since Lauren is basically an adult, living away from home, and she is the one with the chronic disease. The hardest lesson that I have learned and the battle I, and I am sure all of you fight every minute of every day, is that my child has a chronic disease and it is her battle that she must fight every day – alone and in her own way. I can help, I can console, I can cheer her on, I can offer moral support, I can pray, but I cannot fix it or fight it for her. I can sympathize and empathize, but the truth is I really don’t know what it is like to be her. When she is at home, I do not feel helpless as I know I make her challenge easier by taking care of food and details, but when she is at school, I do feel helpless as I can only sit on the sidelines. I want to take control, but it is not my place, nor is it feasible. Nor in the long run will it help her. My baby bird is out of the nest. Lauren is one of the strongest, most determined people I know. She will figure out what is best for her and make peace between medication and lifestyle. What keeps Lauren and I going with this diet is that we strongly believe that diet kept her healthy after her initial healing, diet contributed to making her sick again, and we are hoping that all the stories we have read about SCD are true and at the end of this initial 12 weeks, she will see improvement. We do not expect complete healing, but if the pill cam does not show improvement, we will be more than disappointed.
THANK YOU FOR BEGINNING THIS BLOG!!! Jo Lynn