I’ve had Crohn’s disease for 28 years. The first 15 years or so were absolute Hell. When I was diagnosed at 8 years old, I had already been having horrible symptoms for about a year before I told anyone. I was so scared. After my diagnosis, things got even worse. I was constantly in the hospital. Constantly hearing nurses and doctors say, “You’re too young to be this sick.” Uh, obviously not … here we are. Everyone who knew I was sick started looking at me differently. Looking at me with pity. Like, “How sad, this girl will never live a normal life.”
Growing up with a debilitating disease is brutal. It’s so hard to find joy. It’s so hard to imagine a future that isn’t filled with pain and misery. It’s so hard to become the person you want to be because the person you end up becoming is angry and desperate. After enduring a decade of prescriptions, hospitals and shitty doctors, I decided to look for alternative methods of healing. They wanted to remove a portion of my colon but basically said the awful pain and inflammation would likely come right back. No thank you. I didn’t see any point in that. I took myself off the prescription medications and started searching for natural alternatives.
Over the next few years, I tried all kinds of herbal supplements and probiotics. None helped. I started to doubt that relief was going to come in pill form. I began looking at my lifestyle. Looking for the places in my life where inflammation was being created and exacerbated. My diet and my mind were my biggest culprits.
Eating had always been a source of chronic anxiety and pain. Everything seemed to make me sick. I started experimenting with different diets. I tried elimination diets so many times … only to become so overwhelmed that I would eventually eliminate eating all together. I felt just as desperate as I did on all the medications. I had no one to talk to and everyone around me just encouraged me to eat whatever they were eating. To drink whatever they were drinking. To do whatever they were doing. And I wanted to, too. I wanted so badly to be normal. To just live my life like everyone else. But most of those things made me feel so much worse.
Eventually, I started writing down my body’s reactions to food. Over time, this developed into a food journal. A place where I wrote down what I ate and drank and tracked how my body responded. Patterns began to emerge. I started avoiding certain foods. It made eating less stressful and I started feeling a little bit better.
During this time, I was in college and living alone. Psychologically, it was a very difficult time. I had great friends but I tried to keep my illness from them as much as possible. I felt very isolated. I was always having incredibly negative thoughts. The mornings were the worst for me, physically and emotionally. Most mornings, I would wake up already running to the bathroom. My body in pain and my mind going haywire. Each day began with thoughts like, “I’m bleeding to death. I’m going to die.” Such an unpleasant way to start the day. Then these thoughts would spiral out of control and I would spend the next hour or two crying and bleeding on the toilet.
At one point, I got so sick of these thoughts that I started to stand up to them. Challenge them. My mind had been telling me that I was bleeding to death every single day since the beginning of this ordeal and yet, here I am, all these years later, still not bled to death. I just started talking shit to my shitty thoughts. After awhile, the thoughts spiraled out less and less. I would wake up in a panic, think my shitty thoughts, challenge those thoughts and sometimes, they would just stop and I could actually think about other things. Once my morning thoughts started improving, my days started improving.
Paying attention to what I consumed and the thoughts consuming me became great tools in creating a better life for myself. Once my body calmed down, I was able to start eating more normally. Eventually, I was even able to add back in most of the trigger foods I had been avoiding. I still have shitty thoughts every day, but now they don’t take over my whole day. I can see them for what they are and quickly move on. I feel like a totally different person today from who I was for most of my battle with this disease. I’ve been off medication since 2004 and have been in remission for years. The culinary world has opened up and I’m no longer controlled by my negative thought patterns.
Many people with IBD are so deep into their despair that they can’t even imagine better days are possible, for them or anyone else. Often, they believe those who achieve remission are “lucky” and completely disregard the tremendous amount of work that was put into healing and recovery. It’s annoying and quite frankly, incredibly insulting. “How dare they call all my hard work luck!” What part of what I have described above sounds lucky?! But I also understand why they think that way. For a long time, I did too.
They have no hope left. No faith. All they have are problems to every solution. People ask me all the time to help them. “I’ll do anything! Help me get into remission. I don’t want to be on medication anymore.” But it becomes apparent very quickly they aren’t actually willing to do much. Most are looking for a quick fix that doesn’t exist. When I describe the things it has taken me to get my life back, many aren’t willing to even try. “That sounds like a lot of work.” Well, yeah. It is. Most aren’t willing to put in the work and ultimately say, “I think I’ll just keep taking my prednisone and hope things get better.” My heart breaks for them. Is that not what they had already been doing? Is that not what they came to me complaining about in the first place? Placing all their hope in medication that they’ve already been on for years. Keeping themselves in the same desperate situation. The truth is, some people don’t actually want to get better. They’ve identified with being a sick person so much, they can’t imagine being anyone else.
Back when I was diagnosed, people didn’t have computers or smart phones. There were no online support groups to give me encouragement or advice. There was no Google to research the disease or the drugs I was being given. I was 8 years old. I just had to trust the adults around. Just had to trust asshole doctors who treated me like an idiot and dismissed almost everything I said. People today are so lucky and they don’t even realize. They don’t have to be alone like I was. They have so many more options available to them.
It’s terrifying to think that I could be living the rest of my life with a colostomy bag had I listened to my doctors. I’m so glad I trusted myself and stopped doing things that were detrimental to my health. When people meet me today, they’re often shocked to hear I have Crohn’s. I’m healthier than many of the “healthy” people I know. It wasn’t luck. It’s a lot of hard work, dedication and listening to what my body is telling me. A better life is possible, but you have to work for it.
Now when people tell me I’m lucky, I tell them they’re right. I’m lucky I care enough about myself to do what needs to be done, even when it feels impossible.
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