I was diagnosed with Crohn’s disease in February 2013, and as I learned more about my condition I also found that a lot of people do not know the extent of how Crohn’s disease affects the whole body. So here is a short list of some of the things I wish people know about this disease. I can only speak for myself from my experiences, but hopefully readers will get a general idea of what sufferers of Crohn’s disease go through.
1. Crohn’s disease does not only affect the GI tract.
It’s just not my gut that gets a beating. What started out as a tiny red lump on my wrist suddenly exploded in painful, large rashes and sores that spread to my arms, legs, and chest—but thankfully, after many specialist appointments a solution was found. There are times when it comes back but not as aggressively as before. I wake up every morning feeling like I just ran a marathon because of how sore and stiff my joints get. There are night sweats whenever I have to go on this certain medication for inflammation. I can go from having a flat stomach to being so bloated I look pregnant minutes after eating.
2. Fatigue is a constant bitch.
Seriously. Having a full night sleep doesn’t help. Coffee doesn’t help. A healthy meal doesn’t help. Doing the smallest things can leave me exhausted, and I used to nap up to 4 or 5 hours a day within the first few months of my diagnosis. The fatigue can be debilitating to the point where it stops me from going to my college classes or work.
3. The stress is a never-ending cycle.
Stress aggravates symptoms and can trigger flare-ups. Having Crohn’s disease is stressful… need I say more?
4. The pain is nothing like I’ve ever felt before in my life.
The thing about Crohn’s is that there are different types of pain. Sometimes it feels like an invisible pair of hands are reaching into my gut, pulling and squeezing my intestines to the point where I become immobile. There are times where I become so bloated that it becomes hard to take in full breaths. Other times I’ll be perfectly fine and then it’s as if I’m suddenly being stabbed repeatedly all over my stomach. These pains come on so suddenly and sporadically. When I first got diagnosed I was so scared to go out anywhere, the fear that I would suddenly get hit with a flare was severe.
But like everyone who struggles with a chronic disease, I came over the fear and now go out without any hesitation. And if I suddenly get my pains, I grin and bear it. That’s another positive thing about having Crohn’s disease: “You never know how strong you are until being strong is the only choice.” But don’t take my word for it—many women who have Crohn’s and have had children write that they would rather go through childbirth again instead of going through another flare.
5. It’s a constant love-hate relationship.
It’s important to rest and recover after having a flare. When I’m curled up in my Betty Boop blanket, drifting in and out of sleep I mentally beat myself up. “Come on Kirsten! Get your lazy ass up! You’re wasting another damn day!” Myself confidence dropped. I found it hard to leave the house and plan activities with friends. I became picky about what I ate, had terrible mood swings, and was just overall miserable. Today I still battle with this love-hate relationship with myself, but when you’re surround by people who support and love you, the light becomes visible at the end of the tunnel.
6. I may look fine, but I’m not.
Remember Crohn’s disease is an invisible illness, an unpredictable and complex autoimmune disease. I can walk down the hall of my school with a smile on my face, but everyday I’m fighting through some type of pain, as every other person with an invisible illness. We just become good at hiding it. I don’t always talk about my symptoms, and I don’t always admit when I’m not feeling well because that’s just how it is. I don’t want to go around and allow this disease to run my life.
With this being said, I don’t mean to make this article all dreary. There are some positives I found: I’m stronger than I truly thought. Whenever I have to go through something physically painful, like medical examinations or treatments, all I think is that if I can make it through having this disease I can make it through anything.
If you’re suffering from Crohn’s disease or want to learn more, the Crohn’s community groups on Facebook are amazing people to confide in and learn from.
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