“Thank You, Jesus, for my Crohn’s Disease – Part 2

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My Senior year of high school was a great year despite this life-changing diagnosis.  My Crohn’s disease was soon under control with the medications and treatments. I had my bouts of depression and sadness, yet in addition to my parents, God had made sure that Brett would be by my side through it all.  We had been dating for a year at that point, and of course, I had no idea that he would be my husband someday. God knew and was preparing Brett for the journey ahead.  Brett wrote me a letter soon after I was diagnosed that told me that no matter what happened with this chronic disease, he would be right with me.

B and C Crohn'sI love this picture. It was taken around the time I was diagnosed.

The song that has captured our love story had become “Come What May” by Ewan McGregor and Nicole Kidman from Moulin Rouge. (I confess…not the most moral movie).  Read a section of the song:

And there’s no mountain too high, no river too wide
Sing out this song and I’ll be there by your side
Storm clouds may gather and stars may collide
But I love you, I love you
Until the end of time
(Until the end of time)

Come what may, come what may
I will love you until my dying day
Oh, come what may, come what may
I will love you, I will love you

Brett and I had a long distance relationship throughout college and have been through some hard trials in our almost 7 years of marriage, and therefore, “come what may” has been a motto we live by that no matter what happens, we will choose to love each other.  This disease would be the beginning of many obstacles to overcome together.

I had a couple flair ups throughout college. My biggest was that first semester of my Freshman year. With college brings change and stress, and soon followed a flair up. I quickly learned that STRESS is my biggest enemy and inducer of Crohn’s symptoms.  My suite-mates would find me literally studying with textbooks and study notes on the toilet since there was no point of running back and forth to my room. (Gross? Maybe, but just giving you a glimpse of the life of someone with a bowel disease.)  Or I would be hyperactive at 12 am and couldn’t sleep because of a side effect of one of the steroids. Good thing my roommate was a night-owl.

My roommate, Rachel, and suite-mate, Katie, were the exact friends I needed while dealing with this embarrassing disease, especially during the first semester at college! They never judged my bowels (especially since I couldn’t control them!) and would laugh and joke with me at every chance.  I coined the phrase, “I have Crooooooohns!” and would whine this when I needed an excuse for something, even unrelated to the disease.  Looking back now, I thank the Lord for putting Rachel and Katie into my life to lessen my fears in new social experiences and allow me to feel ‘normal’.

FXCD0002Rachel, Me, Katie at Cedarville University – December 2004

Fast forward to 2008.  I had mild flair ups from time to time, but then the Spring of 2008 came.  I remember vividly sitting in the room at Dr. Maisel’s office and the RN asked me if anything was going on in my life to explain a flair up I was experiencing. My reply? “Let’s see. I’m in the middle of my Dietetic internship. I’m getting married a week after I finish my internship in July.  My fiance is filming a short film two weeks before our wedding. Brett and I are then moving into an apartment. I start my first professional job one week after the honeymoon, I officially graduate college in August, and then will be taking my Registered Dietitian exam soon after.”   College Graduation. Marriage. Moving. New Job. National Exam.  Stressed?!?  Again, it was another red flag that stress = flair up.

All praise to Jesus, with medication my symptoms were reduced. That summer of 2008 was an exciting time of change, and fortunately, I was able to enjoy every moment without the uncomfortable challenges of the disease…

…Until October of that 2008 hit.  5 months into marriage, Brett was finishing the editing process of The Board and gone until 1 am most nights, and Satan decided that it was time to throw a curve ball. The Board is an evangelistic film that we passed out to each home in Brownsburg, Indiana, to share the gospel of Jesus Christ.  Satan wasn’t too happy, so like with Job, maybe God allowed him to push the thorn in my flesh deeper to distract Brett’s mission.

Brett and I were youth leaders at our church, and one evening in late October we went on a night hike in the woods.  I remember the exact moment as we were walking when my breath caught and I gasped.  All the sudden my chest felt constricted and I couldn’t breathe.  I got Brett’s attention and told him that something is not right and I can barely take a deep breath.  Fortunately, we were at the end of the hike and exited the woods to enjoy a warm bonfire.  Almost immediately, my chest opened and I was breathing regularly again.  I shrugged it off as “that was weird” and didn’t think about it.

Until a few days later when I started to have high fevers. Ongoing fevers. All day and all night. I couldn’t get out of bed. So after a few days of no relief I called Dr. Maisel, and she instructed me to go to the nearest lab to get blood and urine tests. That was on a Friday, and I didn’t hear from her until the following Monday. I vividly remember when she called that Monday morning. I was miserably in bed from the ongoing fevers for a week with no relief or answers, and Brett had already left for his part-time job at The Indianapolis Star.  We were on the phone for less than 3 minutes and in summary she said, “Pack your bags and go to St. Vincent Hospital immediately. You are being admitted for histoplasmosis.”  What is that?!? was my initial response. Big name must mean big problem. Dr. Maisel was matter-of-fact on the phone, but I knew she meant business and this was an urgent matter.

Once admitted, I quickly found out that histoplasmosis is a toxic fungus from bird and bat feces. It is very common in the Midwest and a large majority of people have traces of the fungus in their lungs but their immune system can easily fight it off. However, because of the Remicade treatments and medications I was taking to treat Crohn’s, my immune system was compromised and I could not fight off the fungus. So that moment in the woods when I gasped for air?  That was the moment I contracted it from bird feces in the woods.

I was admitted for 5 days in the hospital, being infused constantly with antifungal medication to kill it off before it left my lungs and permeated into the rest of my organs. An x-ray of my lungs actually looked similar to pneumonia.  The doctors were shocked that I only had fever symptoms and was not coughing constantly.  By God’s grace the histoplasmosis was under control and I was released.

However, I mentioned that possibly Satan was the instigator. We’ll never know for sure until heaven, but as always, when Satan means to harm, God turns it for good.  I missed the premiere of The Board because I was in the hospital that very night.  The short film was premiered at a movie theater for our church family, friends, and all the many volunteers involved in the production.
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Here is 1 of the 4 screenings at the premiere totaling about 900 people.
Can you find Brett and his family?
It was an exciting night, yet I was at the hospital crying. (Fortunately, I have an amazing sister, Laureann, and brother-in-law, Robby, who visited me so I wasn’t alone on the night of the big event!)  Brett came over after the premiere and I had my own private screening in the hospital room.  Looking back to that night, I now know it was only the beginning of God keeping me humble. When it comes to the gospel, it sure is not about me. It’s all about Jesus Christ.  Since then we have produced a feature film and are in pre-production of our next film, yet God continues to keep me humbled throughout the process.
I can’t wait to continue to share how God continued to use my Crohn’s disease to bring glory to Him! Check back next week…
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Thank You, Jesus, for my Crohn’s Disease – Part 1

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“…I will not boast about myself, except about my weaknesses… Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.  That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”  ~ 2 Corinthians 12: 5,7-10

I thank Jesus for what I have considered my thorn in the flesh, an autoimmune disease, called Crohn’s disease.  It’s an inflammatory bowel disease, which when flared up, it truly is a thorn in any area of the gastrointestinal tract causing pain, discomfort, and possible embarrassing moments (since it does have to do with the bowels)!

My senior year of high school started like most students: excited to be graduating soon, anticipating college, figuring out God’s will for my life, and having fun the last year of high school.  However, that Fall I started having some bowel symptoms that were concerning, so I went to get it checked out. My doctor referred me to the BEST pediatric gastrointestinal doctor, Dr. Susan Maisel. After a colonoscopy and upper GI endoscopy, it was confirmed that I had Crohn’s disease. My stomach, small and large intestines looked like raw hamburger. (I’ll spare you the pictures…I do still have them!)

The place where I had the colonoscopy was near Long’s Bakery,  a donut shop downtown Indianapolis. So Mom did what Mom’s do: we bought some after the procedure since I was starving after not eating for 24 hours.  Bad decision.  Note to all who have colonoscopy procedures: donuts should NOT be the first food you eat.  Mom ran into Walmart for a quick grocery run while I sat in the car.  No sooner than my last bite, well….. need I say more?  Let’s just say Mom didn’t get back quick enough!

Oh, and a note on my Dad. He took me to a Shania Twain concert the night before my colonoscopy! Right before the concert, we sat in the car while I drank the prep drink to get my bowels moving. Unlike with the donut, my bowels waited until I got home! 🙂

I remember sitting at Panera Bread with my mom when the nurse called to confirm that I did have the disease.  I had never heard of the disease before; therefore, I was fearful because I didn’t know what to expect and how this would impact my life.   At my follow-up appointment, I walked out with a handful of anti-inflammatory prescriptions to lessen the symptoms and get the disease under control. That meant taking up to 20 pills every day.

In addition to the several oral medications, I received Remicade treatments every 8-10 weeks.  Remicade is an IV infusion drug to treat Crohn’s disease and rheumatoid arthritis.  The first couple infusions were done in the PICU at Peyton Manning Children’s Hospital and took up to 6 hours!  Fortunately, Dr. Maisel made it possible for her patients to start receiving the infusion at her office, which only took 2 1/2 hours. (Oh, and that Panera Bread that Mom and I were eating at when I first got my diagnosis? It is right down the street from Dr. Maisel’s office, so it became our lunch date spot after my appointments and treatments).

So at 17 years old, I started the life of having a chronic disease where there is no cure (except surgery to remove the diseased area, but there is no guarantee it won’t return in a different area of the GI tract). 75% of Crohn’s disease patients have surgery at some point in their life.  I was taking several medications, receiving IV infusions, and was fearful of the future. I even became depressed as a side effect of one of the drugs.

Crohn’s disease became my thorn in the flesh. If this was Satan’s doing, he meant harm, but God meant it for good. I am weak, and He is strong. Yet, stay tuned to see how God’s power has been made perfect in my weakness…

The 4-1-1 on 3-11

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Today is 3-11. And if you know me, that means it’s my birthday!  But what is even more exciting is that this year, 3-11 is also National Registered Dietitian Nutritionist Day!  God knew that I’d be a Registered Dietitian Nutritionist someday, so why not be born on the same day that RDN’s are recognized!?

rdnNote: National Registered Dietitian Day is always the 2nd Wednesday in the month of March, which is National Nutrition Month.  Therefore, it doesn’t always fall on my birthday. But 2015 is a good year!

I’ve been itching to write on my blog about nutrition topics. I haven’t been on here recently because….well…I have a 3 year old and a 10 month old….and who has the time for that? 😛

But to be honest. I’ve been slightly intimidated.  Why? First, there is a host of information and blogs and websites on nutrition, and who would read what I would have to say?  Second, well….let’s just face it. Nutrition can be controversial. Because it’s in the field of science, and this study says this…and that study says that…and this diet works…and this diet is old news…and this doctor said this…and don’t forget about what Dr. Oz says!!!

And I’ve had enough!   Every month there is a new study or new book on the best seller list of what to eat, what not to eat, how to lose weight, etc. No wonder everyone is confused!!!   My best friend has been encouraging me to write on my blog about nutrition. After all, I am supposed to be considered an expert since I am a Registered Dietitian Nutritionist.  I say supposed to be because we do not always get credit for being the experts on nutrition. And here’s why:

In the past few years, the title Registered Dietitian (RD) has actually been changed to Registered Dietitian Nutritionist (RDN). Either title is fine to use, but adding the word Nutritionist to Registered Dietitian sets us apart from someone who is just a nutritionist.  And someone who is a nutritionist can be legally….really….anyone.  Take a class in nutrition and all the sudden you are a nutritionist? Start selling “healthy” supplements or meal plans or meal replacements and suddenly you are a nutritionist?  Get your personal fitness trainer license and suddenly you are a nutritionist?   Sorry, but these are NOT the nutrition experts.  And may I add an even more controversial statement?  Even doctors do not receive the same education as RDN’s.   Again, sorry Dr. Oz.  I didn’t read anything in my textbooks or research that says that particular food or supplement is a miracle food.

RDN’s have to receive their B.S. in Dietetics at an accredited university.  For instance, in the state of Indiana, there are only 3: Purdue University (my alma mater – and one of the top nutrition programs in the nation), Indiana University, and Ball State University.  Then, we are required to do a 1200 hour internship in practical experience (which only 50% of students get matched to an internship depending on college grades and experience outside classroom…quite a competing field to start with), and then take the national RDN exam.  Also, in order to keep our license, we have to do continuing education yearly to stay on top of nutrition research and recommendations.   Expert? I believe so.  On that note, I want to send a big shout out today to all the RDN’s that are “the indispensable providers of food and nutrition services and….for their commitment to helping people enjoy healthy lives.”

Yet, we still are not the first person that most run to when they are in need of nutrition and diet recommendations.  Brett gave me a perfect example.  Last winter after an ice storm, a car slid through a stop sign and hit the side of our car, denting and scratching the doors.  Would we take it to Mike’s Car Wash to get it fixed?  Of course not!  We would take it to a car shop that specializes in fixing damaged car parts (or as my dad found on Ebay…2 new doors to replace the old ones!)   They both work with cars, but they are experts in different services for your car.  Likewise, an RDN specializes in nutrition and what to eat.  So why go to someone else that may work with the physical body but is NOT the expert in nutrition?

I’m also tired of seeing all the junk information that’s out there.  And I truly am burdened and saddened by the marketing schemes that the food industry, manufacturers, oh and even doctors trying to sell their books, come up with to make $$$. Big. Fat. Cash. And lot’s of it. At the expense of people’s health.   I’m even more saddened when I see friends and family get swayed by all the gimmicks and fads because of lack of knowledge.  And if I didn’t have the nutrition knowledge that I do have, boy, I would be confused too!  Heck, I even stand in the aisle at the grocery store and spend a good amount of time reading this label and that label because even we RDN’s are overwhelmed with the products and choices!!! (Can I get an amen fellow RDN?)  Because of the internet, anyone can post anything and call it true. Because of our wonderful free enterprise in America that I’m forever grateful for, anyone can sell anything and somehow call it healthy. (What about the FDA regulations?! Ha…that’s a topic for another day..)

I hope as you are reading this you share my frustrations too.  And since you probably are not the nutrition expert, you have every reason to be frustrated. One decade it’s low fat, the next low carb, the next NO carb. For years it’s low saturated fat, then for like one day saturated is OK!, then back to low saturated fat because that study was fraud….. you get where I’m going at.

So now that my rant is over (at least for now on this topic!), what is my takeaway.  I want to leave you with some reputable, research-based, RDN recommended resources for nutrition and health.  If you have any nutrition related questions….go here.  If you want to see if what that celebrity did to lose weight and kept it off is research based and truly healthy, go here.   If you want to make sure that Dr. Oz isn’t just promoting that food product or supplement because he’s getting paid millions to, go here (or just turn off his show).

Academy_of_Nutrition_and_Dietetics_logoAcademy of Nutrition and Dietetics – The real nutrition experts live here.  There is even a link to search for RDN’s in your area!

thNational Nutrition Month Resources

CSPI-logoCenter for Science in the Public Interest – I subscribe to their Nutrition Action Healthletter and LOVE IT!  If you want to stay up-to-date with solid nutrition research recommendations, subscribe to this newsletter.

Heart-Association-Logo-American Heart Association – Heart disease is #1 killer and if everyone ate the diet recommendations listed, most all preventable diseases would disappear (heart disease, strokes, obesity, high blood pressure, high cholesterol, diabetes).

Untitled-1Choose MyPlate

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National Institutes of Health (NIH)

 In the future, I’ll blog about specific diet recommendations, but here is some info to get you started. My goal is to educate you on research based recommendations and debunk the diet and nutrition myths floating out there in the media.  If you have a specific topic you want to know more about, leave a comment!!!  I’ll do my best to blog consistently, but remember….I have a 3 1/2 year old and 10 month old! 😉

Again, Happy RDN Day! (and birthday to me!)