What to Keep in Mind if You're the Friend of a Crohn's Warrior

To the friend of a Crohn’s Warrior:

Being diagnosed with Crohn’s disease is a life-changer. One that, if not handled properly, can be fatal. Many do not understand the effects of the disease. Some say and think, “Oh, it’s just a pooping problem.” But dear reader, it is not. And others will say, “At least it’s not cancer.” Correct. But it is an incurable disease that progressively worsens and has severe and life-threatening complications. This disease makes one find out who their real friends are. It makes friend groups go from 20+ to not more than five. I, dear reader, am a Crohn’s Warrior. All of this you are reading is true.

 

Being called a “Crohn’s Warrior” is a proud statement; however, it also comes with its own problems. Being a Crohn’s Warrior means you have sat through incomprehensible amounts of pain. Exploded either on or near a toilet (sometimes more than once). Bleeding by the ounce into the toilet. Constant fear of when the next flare will hit. Anxiety from not knowing where the nearest restroom is. And being around people who cannot simply understand without actually having firsthand experience. But being called a Crohn’s Warrior means you are badass. You are able to sit through a full 15 out of 10 pain scale straight-faced. Being in excruciating pain and being able to hide it. Being able to fake being normal. Even though we all (us Warriors) know we are the opposite of normal.

Enough with the meaning behind Crohn’s Warrior. Dear reader, let me tell you what it is like to have Crohn’s.

The problem with Crohn’s is that it is an autoimmune disorder. Meaning that the immune system that is supposed to keep you healthy is literally trying to kill your digestive system. An additional problem with Crohn’s is the disease is invisible. You have passed people in public that have had Crohn’s. You just don’t know it. The only way you know is if the Warrior tells you. The only visible signs to you might be weight loss, loss of skin color, fatigue and the general ill look. The visible signs for the Warrior in addition to the previous listed might be foul smelling and/or bloody stools, diarrhea, joint and eye pain, severe stomach cramping and pain, using the restroom too many times to count. But these aren’t what every single Warrior has. It varies by severity. The Warrior writing to you has Crohn’s from his mouth to his anus. That’s as involved as it gets.

Dear reader, if you think going through that is bad, try not knowing what is wrong for months (I went six months), and having countless tests done all coming back negative. You give up. But that one final procedure figures it out. Months later, a colonoscopy. But even after you are diagnosed, you’re not out of the woods yet. You still need countless tests and medication. That’s if the medication works. You go on a steroid, and you get better. But Imuran that’s supposed to take over doesn’t work. You get worse. Maybe hospitalized. Your doctor wants Remicade. You go on the $18,000 treatment. An IV in your arm every few months and something finally works. It’s about time because the pain medications aren’t working and all you feel is straight pain and diarrhea.

Since you are nearly symptom-free you think you are out of the woods. But you’re not. Friends leave and you get lonely. The ones you do keep rarely have time for you.

The one symptom nobody talks about. Not even many Warriors. Depression. Crohn’s makes you realize who your friends are. And even those “friends” don’t always make time for you. Dear reader, when I got to this point I relied on my dog. The one “person” who I knew wouldn’t leave.

Reader, if you haven’t stepped into your Warrior’s shoes, please do so now.

Imagine having a disease that has complications that can kill you. That’s right. Death. Complications from Crohn’s can kill you. If that doesn’t, then the treatment could. Remicade is an immunosuppressant. While on Remicade you are at a very high risk for getting hospitalized and/or cancer. The simple chest cold to the normal person is pneumonia and fighting for my life in the hospital for me. I have to avoid sick people; it is my new job that I’m not payed to do. But that’s nothing compared to cancer. Colorectal cancer, skin cancer, lymphoma… Now, dear reader, imagine having that in the back of your mind every second of every day. Not knowing if today is your last.

Now that you have seen their perspective, think to yourself, “Would I need support from my friends?” The answer is likely yes. Once a Warrior gets lonely, they may be afraid to reach out to people, for they feel they are a hassle. But in reality they are calling for help.

So do the following for your Warrior:

Check on them, whether in person or over the phone (because they might be crying in the corner like I was). Plan a get-together with them. If they aren’t up to the weather, go to their house and help them feel better. And most of all, don’t let them get lonely. Having to fight your own body is bad enough; don’t let them fight alone. Also try to understand them. Research Crohn’s, ask them questions, ask them what you can do for them. But understanding is the biggest part. Understand they are in pain, anxious and can’t hold their bowels.

Now reader, I can’t tell you everything. Ask your Warrior. Tell them you are there for them. So go find them and hug them (but not too tight) and tell them “I love you.” It will put a smile on their face.

Sincerely,

A Crohn’s Warrior

We want to hear your story. Become a Mighty contributor here.