Before I continue on my merry way, writing the chapters in my story – it occurs to me that maybe not everyone knows what Crohn’s Disease is. For that matter, how well do I even understand the disease that plagued me for so long? Is my understanding of the chronic condition correct? Or do I have lots to learn still? And why do Crohn’s Disease & Ulcerative Colitis seem to always be grouped together? So I hit the web. Because – I’m not even sure where else I would find information these days. Are people still publishing Encyclopedias? Or Dictionaries?
So before we get to the medical definitions and expert explanations that I found on my quest for education, let’s talk about the Leah Sannar version of Crohn’s Disease. For this purpose, I will keep Ulcerative Colitis out of it, because frankly – before now, I had no idea what it was. Sounds like ulcers in the colon to me, but nobody ever accused me of being an expert. Plus, that’s pretty much how I always described Crohn’s Disease… so what’s that about? If they are different, why are they the same? You get what I’m sayin’? I think you do.
But before we dive into their difference, let’s get back to my definition of Crohn’s: If you were to walk up to me right now and say, “Hey Leah, what is Crohn’s Disease?” This is what I would say: “It’s chronic inflammation of the gastrointestinal tract. It can cause pain and inflammation anywhere from your mouth all the way down to your rear end.” (we don’t need to be big on technical terms, do we? …We do? Okay, fine – from the mouth to the anus. There, I said it. Anus. Rectum. …ahh, the things I write about on this blog…)
Would that have helped you? Do you feel like you would understand that, and have a better idea of what I was going through? Because people usually just give me this blank stare like they hear the words coming out of my mouth, but are still no closer to understanding Crohn’s. So, I follow up like this: “Have you ever had a canker sore in your mouth?” And they usually go, “UGH, YES! Those are the worst!” So I finish with, “Well, Crohn’s Disease is basically like having canker sores all throughout your intestines.” And it’s usually right then, that you start to see the understanding in their faces… like I’ve finally said something they can relate to. Now I doubt that “canker sores in your intestines” is how a trained expert would describe it… but we’ve already covered why I don’t care about that and it’s not like I’m teaching a class. Plus, at least now they have a better grip on what I’m saying.
For blogging purposes, however – I feel as though a little more formal explanation is necessary. That brings us back to why I hit the web. There are lots of great resources out there, but for this particular post – I pretty much stuck with the Crohn’s & Colitis Foundation of America. I find them to be the most authoritative resource that I’ve found so far and their website is very user friendly. After spending unnatural amounts of time on their website, this is what I know:
The difference between Crohn’s Disease & Ulcerative Colitis is actually where the inflammation occurs. Their symptoms are quite similar. While Crohn’s can effect anywhere inside the Gastrointestinal Tract, Ulcerative Colitis is strictly in the colon. Crohn’s is more common amongst teens or adults in their early 20’s, though it can affect you at any age. And the first time the disease was described and diagnosed was in 1932 by a doctor named Burrill B. Crohn. I definitely recommend clicking this link: CCFA.org to and reading the entire article. It covers symptoms, treatment, and gives a very user friendly explanation of the disease. They even have a PDF diagram of the GI Tract with lots of fancy words like Terminal Ileum, Cecum, and Duodenum. Awesome with a capital A. Check it out – for real.
You know what else I learned? I learned that even if I don’t know the expert way to describe it, my understanding of the condition was right on target. Despite my not knowing the difference between the IBD’s (Irritable Bowel Diseases – this is a group of diseases that affect the GI Tract), I did understand mine. That made me feel better. I always felt that twinge of self doubt whenever I explained it to someone. You know, the one where your subconscious is whispering in your ear, telling you that if you don’t open up a dictionary and read it word for word, someone nearby with Crohn’s Disease is gonna overhear you and come up and kick you for spewing bad information.
Here’s something else I want to point out: Crohn’s Disease is a chronic condition. I mentioned this earlier in the post, but I want to touch on this just a little bit. Most of you already know what this word means, but just for due diligence’s sake, let’s define it. The Merriam-Webster Dictionary Online…. Okay, wait. Let’s pause for a minute and take a look at the irony here. I used a dictionary… and oh my gosh, guess what? In the top corner of their website, it says “An Encyclopedia Britannica Company.” What are the chances?
Anyway, they define “chronic” as the following:
The reason I’m defining that word is because when I learned what “chronic” means as it pertains to my condition, I started to really have a better understanding of it. As quoted by CCFA.org: “Crohn’s is a chronic disease, so this means patients will likely experience periods when the disease flares up and causes symptoms, followed by periods of remission when patients may not notice symptoms at all.”
I started to realize and really understand that this means I will always be in a state of up and down. That I can be fine for months or even years and then have a flare and get very sick. Emotionally, this was pretty traumatizing. The more I thought about it, the more I could see it affecting every aspect of my life that I always hoped would be in my future: Work, Friends, Family, Parenting, Sports… the list goes on and on. That sucks. I mean I know it does – I’ve felt it. I still fear a relapse or a flare. Could I even survive another one? Who knows…
But lucky for me – I learned something else in my quest for education. I learned there are TONS of people out there suffering the way I suffered. Fearing what I feared. Asking questions I asked. Needing what I needed. What I didn’t know back then, was that those people are just a mouse click away. There are information sites, forums, blogs and support groups just waiting to reach out and help someone in need. I love that. I want to be a part of that.
I was reading a blog yesterday and forgive me, I’ll have to find the link and add it later because this girl was awesome… but I was reading a post about her symptoms and I felt like she stole my words. How did she do that? Literally, she reached into my mouth and took them off of my tongue. I’ve never been a “support group” goer, but I can’t describe the way that felt. It made me want to go to a support group just to commiserate with these people. MY PEOPLE. This girl knew exactly what I felt like! Do you know how comforting it was to all of a sudden know that here is this one girl who gets it. When I say, “it feels like you’re pooping barbed wire” she understands that pain. She’s FELT that pain. Although, she described it as “pooping napalm.” Point of the story? Reach out. There are people there. I’m here. I wish I’d have done it sooner.
** Leah **
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