This journey of chronic illness is a challenging one, certainly for Caleb, as well as for me, his mom. This is my attempt to pass it on. Here, you will find stories and rants from other parents, survival tips, recipes and more. I hope you find them helpful, interesting, or at least entertaining.
Johanna Lane writes for Caleb’s Cooking Company, but is presently at Camp Oasis in West Virginia, hopefully having a blast! Her mom Catarina Bannier, who is also a contributing blogger, decided to update us in her absence. Here is her post:
This blog has been taken over. Well, not really, of course, but this is Johanna’s mom writing. Johanna is in West Virginia at Camp Oasis, a special summer camp for kids with Crohn’s and Colitis. It’s her first time (not in summer camp, but at Oasis), so she had plenty to worry about before, and I’m sure she can tell you all about it when she’s back.
Today, I want to tell you what I was worried about: that her treatment wouldn’t be disrupted. In her case, that means safe food, or more specifically: SCD. At intake, Johanna got a huge high-five from the medical team when they realized her medication list was… empty. Of course, SCD has been Johanna’s medicine since last year.
Unlike at the Seattle Camp Oasis, “ours” does not offer the diet yet, and the SCD kids (we’re only aware of one other girl) were asked to bring their own food.
This was a shock at first (and in some ways pretty upsetting given that this is a specialty camp that offers every bit of support in other ways, with 24-hour gastroenterologists and nurses on staff, and given that the remission rates of kids on SCD are better than those for most meds). But others have managed this before us — our great online support group came through with plenty of tips.
Johanna came up with a meal plan for the week.
We cooked, assembled and labeled each breakfast, lunch and dinner and then froze everything over the weekend so it would survive the trip. I typed up the meal plan and followed another mom’s ingenious example to color code it for the chef– blue needs to be refrigerated, yellow meals need to be heated, red comes from the snack box, and so on.
Hopefully, there will be enough food, and perhaps the two girls can share some snacks. But more importantly, I hope they can share their SCD experience with other kids so there will be many more of them joining them next year. (We’ve heard a rumor that Caleb’s Cooking Company will try to supply the SCD dinners for Camp Oasis next year. Keeping my fingers crossed here.)
Please Jojo, forgive me for taking your spot this week. Hope you’ll feel great all week and will have an awesome time there. Can’t wait to hear about it.
It’s scope day again. Braxton was sicker than he has ever been and the doctors have decided they want to do another colonoscopy (his third scope in a year and a half, and only 6 months from the last scope). The doctors asked us to bring the Humira to the hospital, so they could give him the first round while he was asleep. They said the first round would be hardest on him because it was going to be FOUR injections in his legs.
While he was in the procedure, I nursed our 2-month-old baby and snuggled him tight, praying that he would never have to live with what his brother was living with.
Our doctor finally came in to update us. He explained that he put an NG (nasogastric intubation feeding) tube in to Braxton’s nose to help nourish him, since he refused to eat. He had already dropped down to 64 pounds in weight.
He said Braxton’s disease had spread and it was worse than it was just 6 months prior. He showed us images of healthy tissue that had now become diseased. He was concerned how aggressive the disease had become and was spreading, even while on Remicade. He put Braxton back on 40mg Prednisone and did the 4 Humira injections, while he was under anesthesia. They also started him on a pretty high dose of iron, since he had had an active bleed for a while.
That night, my mom slept over, since I was nursing a 2 month old every 2 hours. She woke me up early in the a.m. to tell me Braxton had accidentally pulled his NG tube out in his sleep. We had to go to the GI office the next morning to get it put back in. Watching them put this tube up Braxton’s nose, we both had tears in our eyes. I’ll never forget that day.
I swear it changed him. It’s like it sucked the life out of him. He was quiet, very quiet. He looked defeated and withdrawn. That night when he went to sleep, I laid next to him on the floor because he refused to get up in his bunk bed. His heart was pounding out of his little chest. He was asleep, but I could see his body working so hard.
That is the night I broke.
I cried my heart out while holding onto him.
He had this smell to him too. I’ve never told him this and I’ve only ever discussed it with my mother and my husband, but there is a smell I associate with death, that’s all I could think of.
I thought I was watching my son die.
After a while of crying and holding him tight, I crawled into bed with my husband and he literally rocked me like a baby. I know we were both scared, but we needed to remain brave and strong for Braxton.
After a few days, he was able to play a board game with the family for a bit. Then he had a smile on his face again. Despite being so weak and in pain, he still wanted to hold his baby brother every day.
Some days it seemed to be the only thing that would put a smile on his face. After several weeks, Braxton was still pretty weak, in pain, and having diarrhea. Our doctor said he wanted to send Braxton to Cincinnati Children’s Hospital for a second opinion. We were thankful to hear that. We were all exhausted and ready for Braxton to become himself again.
We couldn’t get Braxton to leave the house for anythingDecember 15, 2016
Between breastfeeding an infant, tube feeding Braxton, and all of his bathroom emergencies, we didn’t leave the house for months.
Honestly I think I had some postpartum and depression from everything. We couldn’t get Braxton to leave the house for anything. One night, he did agree to drive around the block to look at Christmas lights. I remember my husband having to carry him to the car and propping him up on a pillow. He also had to have nanny ride beside him and hold his hand. He was just so weak and terrified of everything.
Christmas came and Braxton opened half of his presents while lying down on the couch.
We Started Talking About The Specific Carbohydrate Diet
Things slowly started to die down in January. The numbers of bowel movements decreased and were more like three times a day instead of 15 and 20. We finally received our appointment with Cincinnati Children’s Hospital. We met with one of the Crohn’s UC GI specialists and went over everything. The doctor decided to leave Braxton on the Humira and start tapering off of the Prednisone. They also wanted to add in 50,000 IU’s of Vitamin D.
He also talked to us about a diet called the Specific Carbohydrate Diet (SCD) that was having great success with many Crohn’s patients. It sounded pretty intense, but at that point, we would have tried just about anything. We also decided to leave the NG tube in because the doctor felt it was helping Braxton heal.
When we left Cincinnati, we began to research all we could about SCD. Braxton was pretty excited about it and would read along with me. The diet basically starves the bad bacteria in Braxton’s gut (which cause inflammation) by eliminating all foods with grains, gluten, and sugar. We also can’t eat anything with complex carbs (rice or potato’s) or preservatives. But, even with these restrictions, there were a ton of great recipes for us to try and we started making all kinds of new yummy foods. Even Braxton took an interest in cooking sometimes.
I never want my child to feel ashamed about his disease
We had to slowly build him and his stamina back up. We convinced him to go out in public a little at a time. He was embarrassed about the NG tube in his nose and would wear a hoodie and hide his face as much as possible. He started to go outside a few minutes at a time. We would walk around the driveway once or twice, holding hands and just this alone would exhaust him. He had bad leg cramps as well.
One day, we talked Braxton in to going to the Aquarium. This day will forever be embedded in my mind. We were standing in front of a massive stingray and his tail was missing. He started to swim and come closer to us, but then went and hid under a crate. I commented on this to Braxton. Braxton looked at me and said “mom he’s going to hide because he is ashamed like me with this tube on my face”. I dropped to my knees in the middle of the aquarium and had a very serious heart to heart with Braxton.
I never want my child to feel ashamed about his disease.
Slowly, but surely, we have built Braxton back up to where he has been able to ease back into to school for the last 2 months of the school year. He plays outside now like a normal child. He eats meals and does a nighttime feed with his pump. He even finished school on Honor Roll. Could any of this have anything to do with the SCD DIET? I suppose only time will tell. For now, the plan is to have another scope done to see where we go from here.
June 13, 2017
I have great news to report. We had another scope today and Braxton is healing! I did a live update via Facebook to share the news, which you can watch below.
In the mean time, we will continue feeding our son healthy, whole SCD food and trying to give him the best quality of life we possibly can. We are very thankful to the SCD Diet and all of our friends and family for their support.
Amber Hixson is mom to 9-year-old Braxton, who is living with Crohn’s and is on the SCD Diet. Amber’s story is a heart breaking one. I sobbed when I read it, but unfortunately it is too common amongst our children with IBD today. As difficult as it is to read, it’s important that we appreciate the pain and struggle that not only the kids, but the parents (especially the moms) endure, as they face chronic illnesses like Crohn’s and Colitis. There is much to learn in Amber’s story, about the use (or perhaps overuse) of pharmaceuticals to treat IBD, diet & nutrition and it’s role in healing, and the undying, strength and determination that mothers like Amber have to protect and heal their children.
March 11, 2015
That’s the day when life as we knew it, changed forever.
My 7-year-old son, Braxton, went to the bathroom and there was bright red blood in his stool. I reached out to a GI doctor who I trusted and liked, for advice. Strangely enough I sent him pictures of his bowel movement via Facebook messenger. He suggested just watching it for now, and seeing how things went.
About a month went by. Life was busy, as I was pregnant with our third child.
April 13, 2015
We were at Target, getting the last few items we needed for our baby girl’s arrival. She was due in June and she was our first girl. We already had Braxton, who was 7, and Cohen who was 2 1/2.
We were all the way in the back of the store, and I remember looking at Braxton’s face, which had a panicked look that said, “I have to go now!”. There was no way my 8-month pregnant self could run through Target, so my husband took off with him in search of the bathroom. Not long after, I started receiving pictures from my husband of what looked like pure snot, laced with bright red blood.
I knew it wasn’t good.
I sent the pictures to the GI doc again, and we immediately got an appointment that week. After the initial exam, the doctor said he wanted to scope Braxton and that he expected to find polyps. We scheduled the colonoscopy and reviewed our instructions for clean out. After the appointment, we were leaving town for a short vacation, so we had the fun task of trying to explain to our 7-year-old son what a colonoscopy was during the whole trip.
At first, Braxton was very nervous and asked a thousand and one questions. He finally accepted it and we had a great time away with the family.
April 23, 2015
We were all nervous, but hopeful. I was about 8 months pregnant with our third child and trying my best to remain calm and positive. I knew my body and sweet baby girl baking in there didn’t need to be stressed. We ended up being the last procedure of the day and were told Braxton would only be gone for a short amount of time. Well, it was forever. My heart was beating out of my chest. Finally, our doctor came in to explain what he found.
He told us that he didn’t find any polyps, but that he believed Braxton had Colitis. The biopsies would tell us if it was Ulcerative Colitis or Crohn’s Disease.
I froze and went numb. I know I had the blankest look on my face.
I was in complete shock.
My mind was saying there’s no way my sweet, energetic, intelligent son had a disease, especially one there’s no cure for and will cause him a lifetime of misery.
The doctor asked if we had any questions and my mouth muttered “no”. I had a ton of questions, but I was just too emotional to get any of them out. I just needed the doctor to leave the room so I could cry. I wanted my husband to wrap his arms around me, to let me cry and then get me to my sweet boy in recovery.
When I got to Braxton, he was still out cold. I just wanted to pick him up and hold him tight.
A week or so later, our GI doctor called and gave me the heartbreaking news that Braxton had Crohn’s Disease.
The first medication Braxton was given was 40mg of prednisone. He gained 12lbs in two weeks and his cheeks looked like they were going to pop. His face just didn’t even look like him anymore.
The stress of everything landed me in the high-risk labor and delivery unit at 33 weeks pregnant. We stayed there a couple of days and finally got to go home on “light duty”. Braxton was already extremely hyper active and now on high dose steroids, I had my hands full. Let alone, a 2 1/2 year old who only runs on “wide open”, there was no such thing as “light duty” in my house. But, we were able to keep little miss “diva princess” in place until term.
June 5, 2015
We welcomed Kynzlie Marie into our family.
Braxton was so in love with her. He is an amazing big brother. After settling in at home with a new baby girl, it seemed like things went smoothly for a while. We tapered down on the steroids and tried 6MP. That didn’t last long, as 6MP shot Braxton’s liver. Next was Pentasa. Eventually insurance denied Pentasa, and it being $900 a prescription, we couldn’t afford it, so we switched to something else. I can’t even remember all of the medications we tried. I think Lialda was next.
When Kynzlie was only 6 months old, we found out we were having another baby. Yes, a BIG shock. This would be baby number 4. I was scared to death. We already had so much going on with Braxton and his Crohn’s; our 3 year old had asthma and our 6-month-old baby girl was allergic to soy and had milk protein intolerance. So my plate was overflowing, to say the least.
Our Doctor Decided it was Time for Remicade
After another trip to the ER for blood in the stools and a weeks worth of diarrhea, our doctor decided it was time for Remicade.
He said Braxton wasn’t responding to oral medications and becoming steroid dependent.
He then said the word that scared my mommy heart to death “Methotrexate”! All I could think of was CHEMO!
The thought of having to inject my son at home every week with chemo really made my stomach churn. But our doctor explained that it would help keep his body from forming antibodies against the Remicade and that it was used quite often for Crohn’s patients.
I Needed to Have an Emergency Delivery – But What About Braxton’s Remicade Infusion?September 13, 2016
I had a check up with my OB. I was having contractions that morning and noticed I wasn’t feeling any movement from the baby. They hooked me up to a monitor and the doctor became as concerned as I was. I was by myself that day and trying to remain calm.
I was told that I needed to have an emergency delivery and get my baby out that day and fast.
But then my mind quickly shifted to Braxton. He was at school and it was Methotrexate day for him. No one else had ever given him his injection before and I knew he wouldn’t be comfortable with change. And the next day was scheduled to be his FIRST Remicade infusion.
All of these things were racing through my mind, while I was standing in my doctor’s office swaying back and forth in labor. All I could think about was Braxton and my other children.
I started barking orders and getting everyone and everything organized, telling my husband what he needed to go home and get, what car seats he had to move, etc. Next on the list was to call a friend of mine who is one of the nurses in our GI office to see if she would swing by our house that night to do Braxton’s Methotrexate injection. Braxton knew her well and she was the one who taught us how to do it at the office. Of course she was an angel and agreed.
Finally, it was time to have my baby.
That evening with no epidural (I’m proud to admit), I delivered our sweet little Brody. Greg (my husband) and all of the rest of the kids came to the hospital to meet him. Braxton was so excited to be a big brother again.
The next morning was Braxton’s Remicade appointment. We were smitten with our new baby boy, but heavy hearted because I couldn’t be with Braxton at his Remicade infusion.
Thankfully, my mother (nanny) took him. She sent me pictures during the 5-hour process. After Remicade, Braxton came back to the hospital to see us and hold his baby brother for the first time. Once again, he was so brave and strong. Braxton had Remicade again 2 weeks later and then 4 weeks and 6 weeks.
Finally, he started to feel better and played fall ball for the first time ever. He did great.
I Quit Counting Bowel Movements After 20 TimesNovember 9, 2016
Just when we thought things were looking up, Braxton had blood in his stool again. Then, it got worse. He started having pain like he had never had before. The doctor decided to increase the Remicade, but Braxton continued to get worse. The bowel movements were increasing in number and becoming less and less like poop at all. He was waking up at 2 a.m. and 5 a.m, to literally run through the house to go to the bathroom. It got to the point he couldn’t make it and accidents were becoming more frequent. We made the decision to buy pull-ups for our 9-year-old son. We knew this would be demeaning to him, but discussed it as best we could with him and he was actually pretty accepting of it. Once again he was put back on the Rowasa enemas.
There were days my husband and I would quit counting bowel movements after 20 times.
We watched him crawl on his hands in knees in so much pain.
There were days he couldn’t get off of the couch.
My husband would carry him from the couch to the bathroom or to the car for doctor appointments. He ate less and less and got thinner and thinner. Eventually we could see his ribs, his sternum, and his collarbone. He was so weak and lethargic.
Finally our GI doc decided to scope him again. This would be his third scope in a year and a half, and only 6 months from the last scope. Our doctor also decided he was going to start him on Humira.
I believe that we all learn from one another by sharing our stories. I also found it very cathartic and empowering to share my narrative. If you would like to participate and share your story, please contact me at email@example.com.
I turned 13 last week, 4 years since I was diagnosed with Crohn’s Disease. I decided to look at my journal from this year, and my most recent entry was this poem, which I thought I would share because 1) I haven’t posted in more than a month and 2) as I turned thirteen last week, I realized how much a person can change in one week, or even a day, given the right circumstances and the room to grow. So, here it is:
This is another guest post by Catarina Bannier. Cati is mom to Johanna Lane, who has Crohn’s disease and is on the SCD Diet. She is also author of another brilliant piece called, The SCD Diet, a Well-Kept Secret. Her blog today discusses the controversial topic, “How to treat IBD, without making your kid sicker”.
There’s a brilliant allegory in Jason Vale’s 2014 documentary “Super Juice Me!” that has been stuck in my mind for months. It’s a cartoon of a fish happily flapping about in its bowl until someone starts feeding it “junk food”. At first, a bit of coke is poured into the water, then some potato chips and a piece of pizza. The water gradually gets muddied, subtly at first, then quite obviously. The fish develops a skin condition, has an increasingly harder time making bubbles and eventually can barely move its fins. To save the fish, the caretaker starts adding medication (some big shiny tablets and pills) to the water. But the fish gets sicker, now from the pollution by the meds. The caretaker adds more medicine, and… You get the idea.
The fish nearly dies.
But then someone simply cleans up the water and — presumably — let’s the fish eat what a fish is supposed to eat. And voilà: the little guy recovers quite quickly.
What Does This Sick Fish Have to do with Our Story?
This story is stuck in my mind because it so accurately sums up my personal experience over the past eight months. What happened after my daughter’s Crohn’s Disease diagnosis completely changed our lives.
In 2013, when Johanna was 9, she was referred to a pediatric gastroenterologist because she had returning low-grade fevers, seemed to tire too easily and continuously complained about stomach pains. It turned out she was anemic, stool tests suggested intestinal inflammation, and an MRE showed “abnormally thickened bowel loops”, a typical sign of Crohn’s. Biopsies at the time, however, could not confirm the diagnosis because the affected part of the small intestine couldn’t be scoped, and the rest of her digestive system looked healthy. Johanna was put on a course of several anti inflammatory medications. In the following months, she complained about nausea and increased pain. She was convinced the new pain came from one of the drugs and begged to take a break from them during summer camp. The doctor also vaguely suggested she should eat more fruits and veggies and try a gluten free diet. When she came back from camp, she looked healthy and happy and claimed to feel great. Since she seemed healed, we gradually abandoned the gluten-free diet and went back to our “normal” life.
Fast forward to 2016. By her 12-year “well-child” checkup, Johanna had fallen below the edge of the growth chart, weighed 64 pounds, and the first signs of puberty from the year before had come to a complete halt. We had noticed her health deteriorate over the course of that year without quite understanding why. We feared there were psychological reasons, and perhaps that she was anorexic as she often came home hungry, but then barely touched the food put in front of her. She wanted to “nap” in the afternoons and seemed to catch colds and mysterious viruses all the time.
At the checkup, she finally admitted that the pains had been back for a while. A whirlwind of tests and procedures followed, and by July 2016, the diagnosis was unequivocally confirmed: Crohn’s Disease. Now every single part of her digestive system from mouth to anus was affected, and her injured intestines were no longer able to adequately absorb nutrients. After that, we were just incredibly lucky. The new pediatric gastroenterologist we had been referred to very openly discussed our treatment options:
There was no cure.
Immune-modifying or -suppressive medications, the next step in standard protocol, had potentially grave side effects.
The meds might not work, either.
They might help her growth pick up, or they might not.
There might be surgery down the road.
But… there was something else.
He had just come back from a conference where he had attended a couple of lectures on new dietary research on children with inflammatory bowel disease (IBD). Specifically, it was about the Specific Carbohydrate Diet employed by the GI team at Children’s Hospital of Seattle.
The success rates were striking.
It’s a very restrictive diet, the doctor warned us, and not everybody can make it work. But he set the NIMBAL book from the Seattle team in front of us and urged us to consider this treatment. If it worked for us, it was a safe and long-term sustainable alternative to the chemo drugs.
The SCD Diet turned out to be our “clean water”
We tried it. It did work. The SCD diet turned out to be our “clean water”. Within a couple of months, our “fish” was in remission.
The pain, fatigue and mouth ulcers subsided.
All labs miraculously normalized
She rapidly started gaining weight, and
She finally grew again!
The process was a total eye opener. The “very restrictive” diet itself mostly restricts man-made food components such as preservatives, dyes, artificial oils or sugars—things our great grandparents would not have touched. We’re “restricted” to the real foods on the peripheral shelves of the supermarket and have to skip the 80% that make up the center. We have to cook from scratch. It was hard at first and has been time consuming and a lot less convenient. But actually, it has also been a great gain. It gave our daughter, now 13, back her health, and it taught her to take care of herself. We’re eating delicious, fresh foods of all colors.
“The hardest thing that remains, however, is to live in an environment where the muddied water is the norm”.
When they are affected, children and adults alike are often filled up with pills and infusions to make it easier for them to “enjoy” the mud. Don’t get me wrong: Medications can be great helpers and even life savers, and I’m very thankful for much of modern medicine. But it should be a no-brainer to clean the water in the fish bowl first, especially when it concerns children and teenagers where the long-term effects of medical treatments are particularly concerning. (If that won’t do, the pills and infusions are still available as a last resort.)
If the widely accepted first-line treatment for so many chronic diseases was the prescription of lifestyle changes, the junk food products we’re surrounded with would gradually disappear and would be replaced with real foods. There would even be readily available “fast food” products made from real ingredients in the freezers and on the shelves of the supermarket. That’s my dream vision of the modern world. (Caleb’s Cooking Company is doing just that! We’re making healthy fast food for kids that is made from whole, natural ingredients – all grain, gluten, sugar and toxin free.)
We know we won’t get much help from the pharmaceutical industry in this quest, but it starts with every doctor, every patient, every family. It’s pretty simple: You can give a person with celiac disease pain killers and anti-diarrhea medications, so he can endure what bread does to him. Or you can tell him to avoid eating bread. We all know which approach makes more sense. Vale’s film, by the way, is an eye opener in itself and well worth watching. It is a kind of reverse play on Spurlock’s McDonald’s experiment (“Super Size Me”) as it takes a group of of eight adults with lifelong chronic autoimmune and other conditions—from heart disease, obesity or diabetes to Crohn’s, colitis or rheumatoid arthritis—on a isolated juice retreat and then follows their medical and physical changes.
The interviews and results are fascinating.
It so often all comes down to the fish and the water. We just have to want to see the truth.
Inflammatory bowel disease (IBD) can strike anyone at any time and being a celebrity does not make you immune. IBD doesn’t shy away from the rich, powerful, and famous. It also doesn’t stop them from achieving greatness!
Here is a list of 24 celebrities, from the worlds of sports, music, politics and more, all with either Crohn’s or Ulcerative Colitis. If you have kids, this would be a great blog to share with them. Let them know, they’re not alone in their disease and they can accomplish anything they set their hearts out to. Just take a look below.
LA Lakers basketball star, Larry Nance Jr. says it best “Never let it hold you back or limit your life in any way.”
President Dwight D. Eisenhower
The 34th President of the United States of America was diagnosed with Crohn’s disease while in office in 1956. Despite being hospitalized at Walter Reed Hospital where he underwent surgery, President Eisenhower was re-elected to a second term.
Hollywood Actress Shannen Doherty
Famous for her role as Brenda Walsh in Beverly Hills, 90210 and as Prue Halliwell on Charmed, Shannen Doherty has played some great characters on television and the big screen. While filming for these and other roles, she was battling Crohn’s, but kept it from the public. In a 1999 interview with Star magazine, Doherty disclosed her condition, revealing that she had remained silent about it because it wasn’t very sexy.
Canadian Hockey Star Theoren Fleury
Theoren Fleury is another athlete, famous for his ice hockey career. The retired Canadian hockey star is a Stanley Cup champ and an Olympic gold medal winner. In 1995, Fleury was diagnosed with Crohn’s disease and today is a motivational speaker.
Hollywood Actress Amy Brenneman
Photo Credit: Matt Sayles/AP Photo
Amy Brenneman is a well-known Hollywood actress who has starred in television hits like Judging Amy, Grey’s Anatomy, and Private Practice. Off-camera, she uses her celebrity as a strong supporter of the Crohn’s and Colitis Foundation of America. Brenneman struggled with ulcerative colitis, one form of IBD, for years before she finally agreed to surgery, which she says on the CCFA Web site is what ultimately healed her. Brenneman is an advocate for CCFA, because she wants to help the millions of others struggling with ulcerative colitis.
Comedian Ben Morrison
Some people take their problems in stride, while others make fun of them. Comedian Ben Morrison turned his awkward years in high school and college as a student “with a poop disease” to create his funny and cathartic show, “Pain in the Butt: a Touching Tale about a Touchy Tail.”
Former New England Patriots Offensive Lineman Matt Light
Matt Light was diagnosed during his rookie season in 2001 and quietly battled Crohn’s for a decade. Light says that during his football career, he couldn’t take most Crohn’s medications, and missed games because he was too sick to play. The three-time Super Bowl champion eventually had surgery to remove more than a foot of his intestine. Now retired from football, the athlete shares his story with others to raise awareness and educate the public about Crohn’s disease.
President John F. Kennedy
Photo Credit: Wikimedia
The former president may have had a heart-stopping smile, but behind it was pain. Though it was hidden from the public during his presidency, JFK struggled for most of his life with severe diarrhea and took antispasmodic drugs to try to control his IBD. Reviews of his medical records indicate that he may have suffered from ulcerative colitis, and some reports show he was diagnosed as a child. Other reports on his health indicate that he may have had IBS, or irritable bowel syndrome, rather than ulcerative colitis.
By Mike Purgatori (Larry Nance in for the slam)
L.A. Lakers forward Larry Nance Jr.
L.A. Lakers forward Larry Nance Jr. is on steroids, but not the performance enhancing drugs that you might think. Nance confided recently that he takes prednisone for Crohn’s disease. He also takes Remicade, which he says changed his life. The basketball player has lived with Crohn’s since he was first diagnosed at age 16. Today, at age 24, he’s in remission. His message is always the same: “Never let it hold you back or limit your life in any way.”
Photo Credit: Charles Dharaphak/AP Photo
Marvin Bush is the youngest son of former President George H.W. Bush. In 1990, he was a celebrity spokesman for the National Foundation for Ileitis and Colitis, speaking out about the ulcerative colitis diagnosis he received in 1985, when he was 28 years old. He tried medications, he told The Baltimore Sun in an interview, but lived in denial about his IBD. The next year, hospitalized after losing 30 pounds and suffering from severe internal bleeding, he underwent surgery to remove his colon.
Buffalo Bills Offensive Tackle Seantrel Henderson
Last year, the NFL suspended Buffalo Bills offensive tackle Seantrel Henderson for 10 games for violating the league’s substance abuse policy. According to CBS Sports, Henderson was taking prescribed medical marijuana for both his Crohn’s disease and the pain resulting from two intestinal surgeries tied to the condition. In an interview last October with the Buffalo News, Henderson told the newspaper, “I’ve got doctors telling me this is the No. 1 medicine that would help with your disease. You try to tell that to the league, and it seems like they didn’t care too much.”
Olympic Rowing Champion Sir Steve Redgrave
Photo Credit: Wikimedia
Five-time Olympic rowing champion Sir Steve Redgrave is one very successful athlete, in fact one of the most accomplished. As he was training for the Barcelona Olympic games, he was diagnosed with ulcerative colitis. He received treatment for his IBD and was able to successfully compete until his retirement after the 2000 Sydney Olympic games. Redgrave is one of many famous people who support Crohn’s and Colitis UK and helps bring awareness to ulcerative colitis.
NFL Quarterback David Garrard
Drafted in 2002, David Garrard played quarterback for the Jacksonville Jaguars. In 2004, he was diagnosed with Crohn’s and underwent surgery that removed nearly a foot of his intestines. Still, he played in the 2004 season as starting quarterback for the Jaguars.
Former Whitehouse Press Secretary Tony Snow
Former White House press secretary Snow died at age 53 after a battle with colon cancer. In a 2006 radio interview with Houston gastroenterologist Joseph S. Galati, MD, Snow, then a Fox News commentator, says, “I had ulcerative colitis for 27 years. It is, at least in my case, probably congenital.”
Musician Mike McCready
Diagnosed at the age of 21, Mike McCready took control of his condition and went on to help form Pearl Jam in 1990, igniting the grunge rock era.
After publicly announcing his condition, McCready took on the activist role, volunteering with the northwest chapter of the Crohn’s & Colitis Foundation of America, including lending his talents for fundraisers.
Nightline Co-Anchor Cynthia McFadden
Cynthia McFadden is the co-anchor of Nightline and Primetime and a correspondent for ABC News. McFadden also has to treat Crohn’s disease daily. She, like many other celebrities, uses her notoriety to raise awareness about the condition, including public service announcements.
At the age of 13, Anastacia, an American singer and songwriter, was diagnosed with Crohn’s. After undergoing surgery to remove part of her intestinal tract, she was bound to a wheelchair and had to learn how to walk again. While trying to lose weight to make it in show business, she suffered a severe flare.
Canadian Right Wing Kevin Dineen
The Canadian right wing struggled with Crohn’s disease throughout his 19-year National Hockey League career, particularly in the early years after his 1987 diagnosis.
Hi everyone! Sorry it’s been a while since I’ve written. I’ve been really busy with school and sports. Today I’m going to be writing about the great opportunity I had to be about talking Crohn’s Disease on LIVE TV.
I’m going to admit, that at first I really didn’t want to do it. I fought it tooth and nail and my mom was the one who persuaded me. I was nervous and worried about messing up and the last thing I wanted was to screw up on live television. But when I finally understood the reason that we were doing it (to help people better understand about the SCD Diet, Crohn’s and spreading the word about Caleb’s Cooking Company) and I got over my jitters, I was really glad I participated. We had been asked by WBAL-TV, the local NBC news affiliate in Baltimore, to come onto their morning news show to talk Caleb’s Cooking Company. They asked if we would bring some of my favorite desserts and if we would cook something on the air.
I can be a bit shy, so anytime I even do a video for YouTube, I have to dig pretty deep to find the courage. Being on TV and LIVE was a whole other story. I wasn’t too concerned about my friends seeing the show (in case I screwed up), because I knew they weren’t going to be up at 8:50am on a Saturday morning watching, but I didn’t want to make a fool of myself either.
As much as I didn’t want my friends watching (or too many people for that matter), I knew the more people who saw the show, the more awareness we could raise about Crohn’s and the importance of eating healthy .
So, for the 2 minutes that my mom and me were on the air, we made one of my favorite recipes, a typical SCD dessert I eat all the time. My mom also made a bunch of food to put on the set, like chocolate cake, gummy bears, and marshmallows.
We were sitting in a side room off the set and at one point the anchor came out and introduced herself and said hi. She was really nice and helped me to calm down a bit. There were a lot of bright lights and cameras. Other guests on the show kept filing in and out. They would open these big sound proof doors and every time they did, my heart would start to beat fast and my palms would sweat. My mom had to get all of the cooking stuff organized on a table first, even melt the cocoa butter, then they were going to roll it onto the set. A nice guy came over and put wireless mics on my mom and me. Then, before we knew it, we were escorted onto the set.
The anchor asked me about my Crohn’s and the SCD Diet and before I knew it, I was talking live on TV. At first, I wasn’t sure if the words were coming out of my mouth, but they did. Then I was putting ingredients in the Cuisinart and then boom, it was over.
It started and ended in a flash. Luckily my mom did most of the talking and I just cooked. Unfortunately, I didn’t get to finish the recipe, but I think we were able to get some good information out about Crohn’s, the SCD Diet and the cool food we’re going to be selling soon.
I have to admit, that even though I didn’t want to go on TV in the beginning, it was a really great experience. It was interesting to see behind the scenes of how a TV show was taped, to meet the anchors, and to help spread the word about Caleb’s Cooking Company. It’s also always good to get out of my comfort zone and push me past my fears. It does taking some pushing some times, but I’m usually glad I work through it in the end.
It sounds relatively simple, but let me tell you… it’s not.
I’m an operations person – all about execution. Ask any of my friends or colleagues and they’ll tell you, I can multitask and “get shit done” like the best of them. But, setting up a food enterprise is some serious business.
Here are just some of the logistics and details I am tackling right now:
Food Packaging (deciding style, size, weight, graphics, info on food boxes)
Shipping (how to ship frozen food, costs etc.)
Coolants (dry ice vs. gel packs)
Sourcing Ingredients (best vendors to buy organic whole ingredients)
Lets break these down one-by-one, so you have a better understanding why I have turned grey in a matter of months…
We’re going to be selling three products to launch:
9-inch Pizzas (dairy & non dairy versions)
Pork & Bean Enchiladas
First things first, I have to decide what we’re going to put the food on. The trays for the food have to be able to be frozen, go into the microwave and oven. I also have to consider size and weight, not only of the trays, but the boxes themselves, and food (to manage costs). I did what probably anyone would do – went to the grocery store and stalked the frozen food aisles. I decided to use Amy’s Kitchen and some of their products as samples to work from. Amy’s is obviously mass-producing their food, but it was a good place to start.
I figured I could use the same size box and tray for the chicken nuggets as the enchiladas, which would save costs. I started working with a vendor and got some samples. As it turns out, the minimum number of boxes I can order is 5,000 (yikes). This is pretty standard.
Next, I need to decide on box dimensions. I am going with a pretty traditional size box (very similar to Amy’s), but noticed that boxes in the frozen food aisles stand up on their side (so that the fronts of the boxes face out). I decided to make the width of the pizza box a bit wider, so it can stand on its own.
Samples of boxes and trays
I received the template to design the boxes and now need to decide their look and feel and what I want them to say (besides the obvious ingredient and nutritional information). I’ll work on that copy and provide everything to my graphic designer to lay it out and make it look beautiful!
Next up, how to seal my pizzas? I’ve been struggling with this one for a while. But then, my buddy Andy (who’s making some killer frozen traditional pizza over at DC Union Kitchen, found a solution. It’s called the Pizza Capper. It’s a machine that seals your pizza in a matter of seconds. It’s pretty cool. Check it out. Andy just bought one, so he’s going to be the guinea pig and if he likes it and it saves time and money, it’s definitely going on my shopping list.
When working with frozen foods and selling direct to the customer, one of the biggest concerns is shipping. Shipping frozen food is commonly referred to as the “cold chain.” A cold chain is a temperature-controlled supply chain, according to Wikipedia. Without getting into the details too much, I need to make sure that our food is held at an air temperature of 0 degrees F and the internal product temperature doesn’t exceed 10 degrees F (while we’re shipping).
Right now, my options for shipping frozen food are dry ice or gel packs. They each have their advantages and disadvantages. I’m leaning towards dry ice. Then, I need to decide the best cooler option. I am pricing out cooler samples (there are a wide variety with different wall widths (the thicker the wall, the longer the food stays cold). All of these items are expensive. The coolers themselves run as much as $7-10 just for the cooler/box (let alone shipping costs). This is the reason why I have to have a 12 product minimum order.
Cooler sample with box included
I need to make sure I can ship food cross country without it defrosting. So, I’m getting ready to run a sample test. I plan to buy 12 boxes of Amy’s food (we’re not in food production yet), put it into my sample cooler with dry ice and UPS it 2-day air out to my sister in LA. I’m then going to do the same thing again with gel packs and see which one keeps the food the coldest. I can also see what my shipping weight and costs are.
I have a long list of ingredients I need to buy in order to start cooking our first products. Keep in mind that everything needs to be organic, with no toxins or preservatives and free of GMO’s. We also can’t use any grains, foods with gluten or sugar. Our ingredients range from boneless pork shoulder to organic yellow split peas, organic coriander and black beans, to organic chicken breasts & thighs, butter, eggs and canola oil.
Luckily, I have partnered with DC Union Kitchen, a food incubator in Washington DC, which helps launch and build food businesses just like Caleb’s Cooking Company. They have established relationships with a wide variety of vendors who sell everything from produce, to meat, to seafood. DC Union Kitchen will help me find the best vendor with the best ingredients at the best price.
As you can imagine, there are a lot of restrictions, laws and regulations when it comes to managing, making and selling food to the public. So, it would only make sense that there would be a bunch of licenses I would have to get before I can launch. Here is a list of what I am presently navigating. Thankfully, many of these licenses can be acquired online, but just like any legal proceeding; there are hoops to jump through, red tape to follow and patience to be acquired.
1. Business License Application
2. Federal EIN Letter
3. DC LLC Registration
4. DC Food Safety Manager’s License
5. Clean Hands Certificate
6. Sales and Use Tax Registration
7. Certificate of Insurance
8. Health Inspection Report in my business’ name
9. Certificate of Occupancy
10. A notarized letter stating that we produce out of Union Kitchen
11. Union Kitchen’s Caterer’s License
Much of my staffing depends on financing and whether I can raise the next round of money needed. If not, then I will be in the kitchen serving as one of the line cooks. If I can raise the money needed, then the plan is to hire a Sr. line cook who has not only the kitchen/cooking experience needed, but also operations/logistics in their background to help manage the kitchen. In addition, I’ll need to hire a traditional line cook to help with kitchen prep. We will not only be cooking, but packaging the food and shipping directly out of DC Union Kitchen. This means we need to have a buttoned down process as it relates to cooking and packaging. After all, time =money and there are only so many hours in the day.
Caleb and I are fired up and really excited to finally get into the kitchen and start making food. Well, I have to admit, Caleb’s more excited about eating the food than he is cooking it, but you get the idea. Since we didn’t make our the $30k in our Kickstarter campaign, we are short on funds, so if you can spare a couple of bucks, we sure could use it. We set up a page on the website for donations. Every cent is going to a good cause – that I can promise you. Thanks for your help!
Who doesn’t love a good s’more over a crackling fire? But, have you ever looked at the ingredients in these little white suckers?
I have, and here’s what I found.
This product is highly processed. If you take a look at its ingredient list, you’ll discover new words to add to your vocabulary. Many of theses ingredients are required to increase the shelf life of the product and improve the flavor that disappears when food is not fresh.
Once upon a time, there were no food colorings. Then folks figured out that food looks better and sells more when it can be enlivened through dyes. In the quest to increase color intensity and lower manufacturing costs, cheap artificial dyes have been introduced to the market. Unfortunately they pose a risk for hyperactivity in children, cancer, and allergic reactions.
These marshmallows also have artificial flavors, which are added to products to make them taste better. They are created in a lab and the formulations are guarded as trade secrets. These flavorings can compensate for flavor loss during processing, substitute for ingredients, lower production costs and increase shelf stability.
Corn syrup, another ingredient, is often used as a sweetener in processed food. It is NOT THE SAME as high fructose corn syrup. Don’t be fooled when looking up the amount of sugar a product contains if corn syrup is listed as an ingredient. This is because corn syrup contains 50% sugar, and 50% of another form of carbohydrate known as “”oligosaccharides””, which is pretty close to sugar. If a product has less sugar than you think it should, but contains corn syrup in the ingredient list, you’ll know that the missing carbs are those oligosaccharides, not much better.
All in all, marshmallows are just another example of a processed food filled with sugar and preservatives that we DON’t want to be feeding our kids. By itself, every once in a while, it’s probably fine, but combined with all the rest of the “crap” our kids are eating, its driving the explosion in autoimmune illnesses making our kids sicker.
For a disease that’s called Inflammatory Bowel Disease, one would think the medical community would spend more time studying the effects that food entering the bowel has on the disease itself.
Well, finally, they are…thanks to ImproveCareNow and a brave doctor leading the charge, a large-scale nutritional research study will launch by the end of July.
Keep in mind that if it’s scientifically proven that diet and nutrition play a role in the healing of IBD, it smacks right in the face of the powerful and wealthy pharmaceutical industry, which venture to gain nothing financially. Right now, there are 177 pharmaceutical products worldwide meant for the treatment of Crohn’s disease and 52 pharmaceutical products in the trial for the same.
“For a long time, we just looked at IBD as primarily a disorder of the immune system, and we forgot the rest of the body, but that’s changing.” – Dr. David Suskind
Standard IBD treatment includes medications that suppress the immune system and dampen the disease’s effects. But those medications leave patients vulnerable to infections and increase the risk of diabetes and other serious conditions.
Dr. David Suskind, who is spearheading some of the first research on children for an innovative diet – called “the Specific Carbohydrate Diet” (SCD) – conducted one of the first studies on the effects of the SCD Diet on IBD.
“The SCD eliminates most grains and sugars, and many of our patients have had tremendous success with it, but no one fully understands why it works or what the best combination of foods is,” Suskind says. “We want to answer those questions and potentially help more children with IBD reduce their medications or stop taking them entirely.”
Suskind’s first study, completed at Seattle Children’s Hospital in conjunction with Children’s Health Care of Atlanta – GI Care for Kids and published in the Journal of Clinical Gastroenterology, examined the effects of the SCD diet on 12 patients. Patients started SCD with follow-up evaluations at 2, 4, 8, and 12 weeks. Eight out of the ten patients who finished the 12-week study showed significant improvement and achieved remission from the dietary treatment alone.
“For decades or longer, medicine has said diet doesn’t matter, that it doesn’t impact disease,” Suskind said. “Now we know that diet does have an impact, a strong impact. It works, and now there’s evidence that it can move patients into remission.”
Suskind suspects that IBD is caused when the immune system reacts to unhealthy bacteria in the microbiome – the bacterial community in the gut and intestine. He hypothesizes that the SCD feeds the beneficial bacteria while starving out the bacteria that contribute to IBD.
Suskind, as part of the ImproveCareNow (ICN) team, are preparing to launch a much larger potentially groundbreaking new SCD Study called the PRODUCE study. “We’re hoping to show exactly how the diet changes the microbiome and quiets down the immune system,” Suskind says.
What is the PRODUCE Study?
The PRODUCE Study, which stands for Personalized Research on Diet in Ulcerative Colitis and Crohn’s Disease, is a first of its kind when it comes to studying nutrition intervention in inflammatory bowel disease. The study seeks to determine the effectiveness of the SCD diet in reducing symptoms of IBD, compared to a modified form of SCD.
Unlike previous smaller studies, the PRODUCE study involves multiple ImproveCareNow (ICN) centers (12 centers) with 120 patients. The intervention is exclusively dietary.
“The PRODUCE Study is going to be a true game changer in how we view IBD and we how we take care of patients” – David Suskind
Patients will alternate between two different Interventions (strict SCD and a modified version of the diet) for 8 weeks each (going back and forth) for 32 weeks (on an ABAB sequence).
This study is set up to examine both the effect for the individual, as well as on a population level, through what’s called an ‘N-of-1 trial.’
N-of-1 trials are single subject experimental designs where the patient serves as their own control. Treatment is systematically varied over time. So, in other words, the same patient is put on the strict SCD and then the modified version for the 32 weeks (total time of the study is 34 weeks, giving 2 week as a preparation time).
“By using an N-of-1 approach, we will be able to generate evidence about the effectiveness of diet in managing IBD for the broader patient community and also, provide direct benefit to patients by giving them greater personal certainty about their treatment choices. This has tremendous potential to improve individual health in a way that is truly personalized and patient-centered.” Dr. Heather Kaplan, Principal Investigator.
Here are the basics of the Study:
Patients will enter the study on an unrestricted diet.
They will be randomized to either the SCD or liberalized SCD as their starting intervention.
Patients will alternate between these two conditions for four 8-week treatment periods.
Total time in the study will be 32 weeks.
There will be certain criteria that must be met in order to be accepted into the study, which are being defined.
The Improve Care Now is sponsoring the PRODUCE study. This research study is funded through a Patient-Centered Outcomes Research Institute (PCORI) Award. ImproveCareNow is an organization working to improve care, focus in quality improvement for all children and youth with Crohn’s disease and ulcerative colitis.