hikari_cyhan (original) (raw)

STOP!

And just read this, please! It's incredibly important and I'd really appreciate it.

You may or may not know, but I have Crohn's disease. I was diagnosed in my junior year of high school--four years ago. It's a huge part of my life, which is why I'm often heard and seen complaining about my stomach. It is not, actually, my stomach that's the problem, but that sounds better than "my intestines".

➤ What is Crohn's disease?
Crohn's disease, along with its younger but no less obnoxious brother Ulcerative Colitis, is what is known as an Inflammatory Bowel Disease. This is not the same thing as Irritable Bowel Syndrome. While neither is arguably worse than the other in terms of symptoms, IBS can be managed by altering one's diet. In other words, you can take care of yourself from home, and may never need to see a doctor. IBD, on the other hand, is a chronic disease. This means that over time, despite all medical aid, the disease is likely to progress, and more potent medical treatment will be necessary. Also, unlike IBS, the only real way to manage IBD is with medicine--and, in many cases, surgery somewhere down the line. Thankfully, IBD is manageable, but there is no cure. The goal of doctors and patients is to ensure the disease reaches and stays in a state of remission. It's still there, but it's not active, or what activity is very, very, very mild.

➤ What's does the disease do?
Crohn's and UC are both autoimmune diseases centered in the digestive tract. Basically this means that the immune system, for one reason or another that isn't known to science yet, really, really, really hates the digestive system. So the immune system does what it does best: it attacks the digestive system, causing inflammation. In UC, the area of attack is restricted to the colon (also known as the large intestine). But with Crohn's, all bets are off. The entire GI tract, from the mouth to the anus, is fair game. Most commonly, Crohn's tends to be centered in the intestines, both large and small. It's classified according to where in the GI tract the inflammation occurs, but I won't bore you with that. Suffice to say every case of Crohn's and UC is different. They're rated according to how bad the inflammation is (for anyone wondering, mine is somewhere in the middle).

➤ What are the symptoms?
Here's the gross part! For IBD patients, bathroom jokes take on a whole new level of funny. We suffer from diarrhea, vomiting, nausea, bloody stool (poo), severe weight loss, ulcers, abdominal pain, and fistula--little tunnels connecting areas of inflammation to other areas of inflammation, or even to other organs. It's really not pretty! It's messy, smelly, embarrassing, traumatizing, and painful. Plus, IBD can cause all sorts of secondary conditions to pop up. I'm not familiar with all of them, but as for me, I have an arthritic spine and a liver disease whose name I can't remember, but I do know it's usually only found in middle-aged men!

➤ What do you do for it?
I do! We all do. There are numerous different kinds of medication for Crohn's disease, the most common of which is Remicade. Remicade, or Infliximab, is delivered through IV during a few hours-long infusion. This is why I talk about going to the hospital once a month; I'm going for my Remicade treatment. There's lots of other medications, too. And then there's surgery. Surgical procedures differ on a case by case basis--there are surgeries to remove fistulas, resections that remove a portion of the bowel, surgeries to install a pouch, and others.

➤ And you just ruined my dinner....why, exactly?
Well, because it's important to be informed! But also because, right now, the Congressional Committees are reviewing a piece of legislation about IBD. The Inflammatory Bowel Disease Research and Awareness Act was introduced to the Senate and House of Representatives on May 6th. The bill aims "to support research and public awareness activities with respect to inflammatory bowel disease, and for other purposes."

It kind of goes without saying that this bill is really important to me. Yes, my disease is manageable. Yes, I get to go away to school. Yes, I'm a fairly well-adjusted person. But there are people whose diseases aren't. People who can't go away to school (some who, in fact, can't even go to work, or leave the hospital). And there are people who have suffered some pretty extreme emotional damage from dealing with their disease. My disease is going to get worse as time goes on. Everybody's does. So I really, really want a cure to be found. I want to wake up in the morning and not take pills. To go out to eat and not worry about what I can and can't eat. To go out with my friends and not have to case every place I walk into for a bathroom.

I want to be free. And I'm not the only one.

So please, write to your Senators and State Reps. Urge them to pass H.R.2275 and S.981 into law. It's not much. I'm not asking you to put a bumper sticker on your car or to pick up a sign and march. All I'm asking is that you take five minutes out of your day to write to the men and women on Capitol Hill. Tell them just how important this piece of legislation is.

H.R.2275 at GovTrack
IBD Research & Awareness Act at CCFA.org *go here to write!*