Diagnosed with IBD
Disclaimer: If you are reading this and dealing with ANY health related problems I am NOT recommending you take the same unconventional approach as I have in my battle with Crohn’s disease. Any changes you wish to make in your care plans should be done in partnership with the team of qualified healthcare providers who treat you.
What did my childhood look like?
Back when I was a kid I’d spend my days hiking in the woods of East Tennessee, biking with friends, and playing football. I had no idea what my future would look like but at that age it didn’t matter. The only thing that mattered in that moment was enjoying life in every way imaginable - exploring, being creative, seeking adventure, and having good clean fun! (well.. and MAYBE getting in trouble every once in a while…)
Life was going to take me down a path I didn’t understand - no one did.
In kindergarten I received an award for being the friendliest / most outgoing boy in the grade. In elementary school I always ranked in the top three boys in my grade for field day activities even though I was often the smallest kid (even smaller than the girls).
But a lot changed between my childhood and when my journey with Crohn’s disease began in college.
During my middle school years, I went to three different schools, I was diagnosed with rosacea, and was no longer the popular, athletic, outgoing kid I had been growing up. Both middle school and high school were an adjustment for me. I had become quiet, shy, awkward, and unsure of myself.
Flash forward a few years: My best friend from high school and I got an apartment in a college town and lived like normal freshmen – even with our diets. We didn’t know how to cook (we almost burnt down that apartment when we tried - ha!) and often times ate highly processed pre-packaged foods / fast food as we rushed between classes. After eating dinner one evening in February 2002, my friend and I were about to leave for the school gym when my stomach became very uneasy. I told my friend to leave without me and I spent the next few hours curled over the toilet with severe stomach flu like symptoms. After the nausea subsided I dragged myself to bed and surprisingly felt normal the next morning.
Problem solved right? Wrong… about two weeks later it happened again! You don’t often hear about a college kid who had two identical evenings draped over a toilet with no alcohol involved. (ha!) Little did I know that I was walking into something that no one had answers to and not even those closest to me would be able to understand what I was going through.
Four months later I had 20 puss filled welts, up to one and a half inches in diameter, appear on my legs for what seemed like no apparent reason. My family doctor wasn’t sure what caused it but he gave me a steroid shot and a prescription and sent me on my way.
What was it like living with Crohn’s disease?
At the start of the following year (2003) I began experiencing what I would describe as classic Crohn’s symptoms – abdominal pain; bleeding; diarrhea; weight loss; and low energy. I had just come back from a Christmas cruise to the Caribbean and brought back what I thought was a stomach bug. I had expected it to be gone within a few days but after a month and a half I knew something wasn’t quite right.
Prednisone helped my GI but had some nasty side effects.
I was referred to a GI specialist affiliated with a respected healthcare system in the area. After a year of trying different medications he referred me to one of the top GI specialists in the state working for one of the most prestigious teaching hospitals in the nation.
For a 22 year old who had no idea what was going on inside his own body it was a relief to be referred to a doctor of that caliber. Terms like ulcerative colitis, indeterminate colitis, and Crohn’s colitis were thrown around but it wasn’t until about a year later that they officially landed on Crohn’s as my official diagnosis.
For the next 9 years I listened to my care team of doctors, nurses, nutritionists, and surgeons. I went to the hospital every few weeks spending valuable hours and sizable amounts of money trying to understand what was going on. I endured a myriad of colonoscopies, CT scans, blood tests, and stool samples – none of which would ever answer “why” I was sick (these tests would only show the severity of my inflammation) - and I didn’t even know what questions to ask. I was aimless in my health journey and didn’t know taking control of my own health was an option.
The doctors and I played what I affectionately like to call medication roulette, picking medication after medication to see what actually worked for me; prescribing steroids, biologics, antibiotics, anti inflammatory drugs, immune suppressants, and others. Nothing really solved the problems I was experiencing – they only covered up the symptoms and they didn’t always do that well.
Remicade worked the best for me, but when Remicade became less effective my remission time dwindled down to two weeks between treatments. My doctors began to talk with me about surgery but it wasn’t something I wanted to do if I was able to avoid it.
Most of my inflammation has generally been in the sigmoid, descending, and transverse sections of the colon and thankfully not the ilium. While at times I have had some inflammation at the ilium I’ve never had a blockage which can make surgery a necessity - always work with your care team on what options are best for you.
At my lowest I weighed 128 pounds.
By the age of 28 when most people are in the best health of their life I was a very frail six foot tall, 128 pound skeleton.
While a lot of people love the idea of sheading a few pounds I always dreamed of gaining some. It wasn’t surprising for me to lose 10 to 15 pounds very quickly depending on how bad of a flare I was in. There were times I’d have bloody diarrhea as often as 20 times a day and as embarrassing as it is to admit… there were times I didn’t make it to the bathroom.
In addition to the classic IBD symptoms I struggled with brain fog, anxiety, itchy eyes, hair loss, acne, night sweats, stinky breath, and just generally feeling blah. One of my lowest points in those first ten years was when I had I developed an incredibly painful abscess/fistula at my rectum. It ended up getting infected and caused a high grade fever that lasted for 30 days! It was the first time I had to take a leave of absence from work and the first time I had any kind of surgery. (It was times like this where I was very thankful for modern medicine)
My life had changed because of Crohn’s disease. Anywhere I went I looked for the closest bathroom just in case, it made date nights and traveling impossible, and I didn’t have the energy to do the things that most everyone takes for granted. The worst feeling was telling my kids that I was too tired to play - they were too young to understand what I was going through and it broke their hearts. Everything around me suffered because of Crohn’s disease… but honestly in that moment I didn’t even have the energy to care.
When my journey started I had no idea that it would take me 10 years of what seemed like never ending sickness to find hope in diet modifications; four years for me to truly embrace and stick with lifestyle change; and the rest of my life to continuously tweak my lifestyle and optimize my health. I would love if I could go back in time and share the knowledge I’ve learned with a younger version of myself - I can however share my lessons learned here for anyone interested.
Update: October 2023
If you keep reading my story you'll see the progress I've made in my health through lifestyle changes (up 50 pounds and rarely any GI issues) - but you'll also see moments where things haven't always gone exactly as planned. It is a learning experience; it's a journey. I have learned an incredible amount on how my personal body reacts to things - for me it's all about listening to what my body is trying to tell me. What is your body trying to tell you?
I believe I know what contributed to the inflammation around my anus causing the abscess/fistula. It appears to be the same trigger that inflames my rosacea which developed in middle school. The fact that this presented in middle school shows that I was presenting immune issues long before classic Crohn's symptoms developed. I also remember having rare diarrhea from cornmeal as a teenager but never any bleeding.
Original Note:
Remicade was very helpful while it worked for me. It was an expensive drug and required a significant time commitment since it was infused into my body at the hospital. My biggest problem with it was knowing it wasn't fixing the root problem. Since I wasn't addressing and eliminating my triggers I had to go back to the hospital every few weeks just to feel normal.
Prednisone did improve my consistency and reduce my frequency but it also had side effects. Not only did my face swell up and became covered in acne it also made me extremely tired, moody, and added to the feeling of "blah" (see photo above).
6MP and other immunosuppressants also helped me some but I was concerned about the impacts to my overall health since they reduced my immune system's ability to fight things it really needed to.
For those interested: The vomiting I experienced ended up being an allergic reaction to salmon (fish sticks) and the welts were what I believe to be an allergic reaction to shrimp. You can read more about this in my post about allergic reactions
You can see from the photos below how pale and thin I looked before diet changes.
