For most of my life, I knew something was wrong with my body. I just never had a name for it.
When I was around 18, I had what I now look back on as possibly one of my first major flare-ups. I had taken Ripped Fuel, which at the time was something you could buy over the counter at Walgreens. I became extremely sick. I had no idea then what Crohn’s disease was, and I certainly didn’t know that the symptoms I was experiencing could follow me for decades.
What followed were years of unexplained sickness.
I would wake up in the morning throwing up for seemingly no reason. It became so normal that vomiting was almost part of my morning routine. I went to emergency rooms. I saw doctor after doctor. I saw nutritionists. I had different scopes and tests done over the years, but no one had ever done the colonoscopy that would eventually help uncover what was really happening.
For years, anxiety seemed to become the explanation for everything.
I have been on anxiety medication for most of my adult life. There were times I was made to feel as though what was happening to me was all in my head. Eventually, I started believing it myself.
I missed so much work throughout my life because I was sick. There were mornings when I could not get myself going, days when I was stuck in a bathroom, and times when I simply could not function the way everyone else seemed able to. People around me sometimes thought I was lazy. Even people I loved did not always understand.
Eventually I started calling myself lazy too.
That may be one of the hardest parts to look back on now.
All that time, I was getting sick.
The vomiting became so severe over the years that it damaged my teeth. I had teeth repaired and replaced, only to have the constant vomiting begin damaging them again. There were countless mornings of gagging, nausea, stomach problems and trying to figure out what food I could eat without becoming sick.
Then I became really, really sick.
This time, the answer finally came.
I was diagnosed with Crohn’s disease.
I was told that it was possible this disease had been affecting me for many years, potentially going all the way back to when I was younger. Suddenly, so much of my life began to make sense. The unexplained vomiting. The bathroom problems. The missed work. The inability to eat. The ER visits. The exhaustion.
For years I had wanted an answer.
I finally had one.
Unfortunately, getting the answer did not mean the suffering stopped.
Crohn’s has completely changed what a normal day looks like for me. Some mornings I can barely get out of bed. I can spend hours going back and forth to the bathroom. I deal with nausea, gagging, vomiting, exhaustion and joint pain that can make simply moving around difficult.
There are days when eating itself feels like a challenge.
I have needed steroids to try to control the inflammation, and I have now started Skyrizi in the hope that it can finally get this disease under control. Treatment takes time, though, and right now Crohn’s still decides far too much of my life.
The part that hurts me the most is not even what it does to me physically.
It is what it sometimes takes away from me as a father.
There are days when my kids need me and I am stuck in the bathroom. There are days when I want to get up, play with them, go somewhere with them or simply be present, but my body will not cooperate.
That makes me feel like I am letting everyone down.
My wife, Lisa, has been fighting her own health problems at the same time. While I was suffering through Crohn’s, she developed shingles. The visible rash has gone away, but she continues to experience random nerve pain and other uncomfortable symptoms, including burning around her lips.
Somehow, we have both been trying to take care of each other while neither one of us has been completely well.
Our son Mark is nonverbal and autistic and has significant support needs. He is still not toilet trained, and his bathroom difficulties and sensory behaviors can create challenges throughout our home. He will sometimes eat things like paper, so we constantly have to keep an eye on what is around him.
For a long time, therapists were a major part of Mark’s life and development. Then First Steps in Orange City closed, and he lost all of his therapists.
That was another huge change for him and for our entire family.
Our daughter, Afton, has also had her share of medical issues. She has vesicoureteral reflux, or VUR, and has already required surgery. She can still develop unexpected urinary tract infections, so when symptoms appear, we have to take them seriously and stay on top of them.
Through all of this, the regular bills do not stop.
Rent does not stop because you have Crohn’s.
The electric bill does not stop because you are throwing up.
Food, gasoline, medical expenses and everything a family needs continue whether you are healthy enough to work or not.
There are moments when the weight of everything feels enormous.
But our family has faith.
And that faith keeps us moving forward one day at a time.
We try to stay positive. We celebrate the good days. We appreciate the people who have prayed for us, shared our story, checked on us or helped our family in any way. Sometimes just knowing somebody cared enough to listen has meant more than they probably realize.
I spent years blaming myself for something I did not understand.
Now I know what I am fighting.
My hope is that treatment eventually gives me my life back. I want to wake up without immediately wondering if I am going to be sick. I want to be able to work, eat, leave the house and make plans without Crohn’s making those decisions for me.
Most of all, I want to be completely present for Lisa, Mark and Afton.
I hope one day I can say that I am in control of Crohn’s instead of Crohn’s being in control of me.
Until then, we keep going.
One day at a time.
Thank you for taking the time to listen to our story, pray for our family or share it with someone who may be able to help. It truly means more to us than I can put into words.
Our family’s GoFundMe is here:
Anyone sharing or publishing our story also has our permission to use the family photo from our GoFundMe page.
Thank you for hearing us.
God bless, Matt and family
