After receiving a positive mono spot test, I thought for sure we would just be dealing with fever and exhaustion for a few months. As the fever went on for over six weeks, I knew there had to be something else happening. Besides the fever, my son lost ten pounds, had little appetite, and was falling asleep in school. We were sent to an infectious disease specialist to test further and after realizing a few additional symptoms, the doctor said, “I think this might be Crohn’s.” I’m sure the look on my face said it all. How could my son have Crohn’s, celiac, tree nut allergy, and exercise-induced asthma?
The calprotectin and other bloodwork values warranted an upper endoscopy and colonoscopy with biopsies. The pathology report confirmed that Crohn’s disease was present. His case was considered moderate to severe, and my stress level hadn’t been that high since I had newborns. To say that I was bummed is an understatement. I felt so many emotions and tried to process everything while working, launching my blog, maintaining the house, cooking all the meals, and putting my health first so I can take care of my boys.
Autoimmune diseases are running rampant, and I didn’t realize the magnitude of these illnesses until I started talking to people around me. Coworkers, neighbors, family, and friends either have an autoimmune disease or know someone with a disorder. Everyone has a unique story about the “self-attacking” diseases. These stories are personal to each of us, and they all come from various perspectives. No two accounts are alike.
This diagnosis immediately consumed me and researching the disease became a top priority. Unfortunately, the more information I uncovered, the more discouraged I became. All the medications I read about, including prednisone, antibiotics, immunomodulators, and biologics improve symptoms but come with hefty side effects.
Biologics are immunosuppressants which leave patients susceptible to many infections. Biologics keep your immune system from attacking your intestines and prevent further damage. My son was prescribed Inflectra, which is administered intravenously. Growing normally and keeping puberty on track is a top priority and doctors said to fight it aggressively.
I’m questioning whether this is the best that modern medicine can do for chronic illness. These medications help with one problem but can cause others. So, for me, I’m terrified of giving my son the meds, but I’m also terrified of NOT administering them. This is the toughest spot I’ve ever been in as a mom.
It’s interesting that a holistic approach isn’t brought up very often. Medication seems to be the first line of defense because it’s fast-acting. I took it upon myself to learn about alternative therapies such as acupuncture, hyperbaric oxygen therapy, and anti-inflammatory nutrition plans. I’ve also met with a doctor of functional medicine. I feel that addressing this disease from multiple angles is the way to go.
There are several Crohn’s & Colitis support groups online which can be helpful at times. Facebook pages and other message boards throughout the internet post some of the worst-case scenarios and I will tell you that these stories are tough to read. There are babies with VEO IBD (very early onset inflammatory bowel disease) and it’s shocking. It’s hard to comprehend that Crohn’s disease could even start at such a young age.
I noticed that some people question nutrition when it comes to Crohn’s. The reality is that many don’t want to spend hours in the kitchen cooking and baking, so they rely on a certain amount of processed food to help with their meal planning. People want to stay in their comfort zone, and they are resistant to change. I think nutrition has to be part of the equation. There are many articles suggesting that ultra processed food is linked to Crohn’s and digestive issues. This isn’t surprising at all.
Modern medicine can do great things for people, but when it comes to chronic disease, medication is immediately at the forefront of the plan. Nutrition, exercise, and self-care aren’t the focus. In the doctors’ defense, it’s probably because Americans want a quick fix and don’t want to put in the work. Our country is growing sicker by the day and our culture just accepts it. People claim to eat healthy, but everyone’s definition of healthy varies drastically.
So how did my bright, athletic, vibrant son end up with 4 health conditions? When I look at what other people have in their grocery carts, I feel pretty good about what we’re eating. Environmental triggers could also be the culprit for chronic illness. I do think food is a huge part of it though. We’ve become so sensitive to many things in our daily lives. Stress can also trigger autoimmune diseases. Busy schedules, a world full of technology, and a lack of vitamin D could all have a part in this. Living in Michigan doesn’t help since winters can be brutal and cloudy days are all too common.
I will turn over every stone possible and research various avenues to help with my son’s illness. My goal is for him to maximize every day that he feels good and to be a kid every minute that he can. Sitting around worrying about the future isn’t helping anything.
Anyone dealing with Crohn’s or Ulcerative Colitis should keep searching for answers and look for better ways to learn about their illness. Don’t ever give up on trying to improve your health. It can lead to a much better life if you have patience.
It’s hard to understand why my son was put into this situation, especially living a healthy lifestyle to begin with. We’re looking at it as part of his life journey and I’ll be alongside him at every turn. He will learn a lot about mental toughness and have exposure to circumstances that will teach him about maturity. I’m sure his positive mindset will be a game changer when it comes to this illness. I don’t picture anything keeping him down for any length of time.
So, I will update my son’s progress periodically and share what is working for him. I’ll pass along new information about the disease as I continue to research and expand my therapeutic support group. I’m grateful to those who have taken time to listen to our story and engage in our healing process. We’ve decided not to live in fear, but instead maximize each day and live life to the fullest!
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Photo by: Stock Cake
