December 1st begins the week of awareness for Crohn’s disease and ulcerative colitis. Since these inflammatory bowel diseases are the reasons I started this blog in the first place, I thought I should take part in this awareness campaign and share some information this week about Inflammatory Bowel Disease, specifically Crohn’s and Ulcerative Colitis.
5 million people in the world are battling one of these diseases.
That’s equal to the number of people battling Alzheimer’s in the United States as well as the number of people who die from tobacco usage each year. When I googled 5 million, these are the statistics that came up. As well as that 1.5 million people in the United States are living with Lupus. These are all terrible and scary numbers, and horrible diseases for people to battle, but that’s not my point.When I did this google search, after going through 7 search pages there had still not been mention of Crohn’s disease or Ulcerative Colitis. I stopped searching after that.
There is not enough awareness for this cause. Inflammatory Bowel Disease is an autoimmune disease that has no cure. No cure. That means 5 million people have been told that they will live the rest of their life fighting this disease and taking medication to try to ease the symptoms (we’ll discuss these in a later post). 5 million people are being told they don’t know what caused the disease to occur, and whether the treatment will work. This number is on the rise, and it’s time to take a stand so no one else has to hear those words.
Speaking with some other IBD Warriors, one of the most frustrating things to deal with is the fact that most people do not understand that inflammatory bowel disease does not have a cure. People are constantly asking when you will be normal again, when you will stop taking your medications or getting your infusions or watching your diet. When will you be able to go out and party again like the old times? People ask this because they care, and because they don’t know any better. They don’t mean to offend or frustrate you.
In my opinion, the only way to bring understanding is to continue to raise awareness and be open and share what inflammatory bowel disease is as soon as the opportunity presents itself.
I remember when I woke up from my colonoscopy, still spinning from the anesthesia and heard that I had ulcerative colitis. Oh. What’s that? I figured it was just something I could take some antibiotics for and it would go away, like bronchitis or something. Uh, not exactly. The doctor said we would meet next week and discuss my treatment plan. And there I was, in my hospital gown with my mom, sipping on my sprite and realizing that my life had just been flipped upside down.
Getting a diagnosis of “no cure”means a lot of emotional turmoil. You battle with “it could be worse” and “why is this happening to me?” It means I get to have good days that I won’t let slip through my fingers. It means I have days where I don’t leave the bed until late in the afternoon. It means I have to take pills every day for the rest of my life, and deal with the side effects. It means that I don’t know if my medications will continue working. I don’t know when my next flare up will be. I will most likely need to continue taking medications and receiving infusions for the rest of my life. I will consistently be watching what I eat, because I’ve found that some foods trigger flare ups for me. It means that someday, like 50% of others fighting these diseases, I may face surgery in my future. This may be surgery to remove part of their intestine, or their whole colon. And this means someone you know may be suffering. There are treatments that can put some of the symptoms into remission. Often these treatments bring very scary side effects. But they do offer a chance at a normal life.
It means I am passionate about raising awareness for these diseases. Every time I see someone else receive this diagnosis. Every time I go to the infusion center. Every time I go to the doctor’s appointments. Every morning and night when I take my medications. Every time I scroll my twitter feed and see someone else suffering. Every time someone from my IBD family gets admitted to the hospital.
Do I wish that I had never received this diagnosis? Of course. But I wouldn’t give it to anyone else in a heartbeat. I’ve met some of the most incredible people through this diagnosis that I would never have connected with if I didn’t go through what they were going through, or vice versa. And if I wasn’t fighting for more awareness, for a cure, who would be in my place? It could be someone you know.
Join me this week as I focus on these two diseases and how we can find hope while fighting them, and while healing.