Crohn’s and Colitis Foundation of America

Yesterday I participated in the Take Steps for Crohns and Colitis which is run by CCFA. Better yet, I volunteered. Last year I was wiped out from walking so I decided this year I would help out instead. Ok, that took its toll on my body even more. Today my back and neck are achy and my feet are sore. But it was soooo worth it.

One thing I like about the walk is the location. I was helping out at the Liberty State Park walk and the views from there are breathtaking.

After I take this in I head over to my assigned area, the food tent. This year I decided to put my talents to use. I helped get donated food for the walk. I was able to get some coconut water, vitamin water, Smartwater, fruit and chips.

After we got set up, I decided to look around before it got real busy. There were tents for some drug reps (Humira, Remicade), Team Challenge sign ups, the Kids Corner with bouncy house, and the DJ. All was quiet before the storm.

As you can see from the pictures, it looked like a storm was coming but luckily, the rain held off. The wind was pretty powerful though. With the almost 90 degrees and humidity, the wind was refreshing.

At 4:00, the walkers were off for a 2.15 mile walk. When they came back that was when the real fun began. Our tent got mobbed. Aside from what I brought, we also had sandwiches, cookies, granola bars, orange juice and spring water. Pretty much everything went.

One thing I have noticed about these walks, and it disturbs me a little is that everyone chats but no one really talks about the disease …. which is why we are all here. I was talking with one of the volunteers and he asked why I was there. I mentioned I had Crohns. He said his son has Crohns and that was it. No further discussion. It really hit me that although everyone comes out to bring awareness and come together, no one really wants to talk about it still. My only conclusion is because it isn’t just the patient but friends and family there also that they don’t feel like opening up. I can understand that.

This up coming weekend is Get Your Guts in Gear. I know a lot of the volunteers that will be there. I know we will be talking about it a lot more but we will also have fun and talk about other things. 2 weeks and 2 awareness events. It is enough to tire these old bones. After the walk, I feel achy. Hate to see what next week brings. Stay tuned for a recap.

Yesterday I read a blog by another blogger, Marisa, which can be found here. This lead me to a post written by Sara found here.

The reason I mention these two blogs is because they kind of opened my eyes to the new campaign going on by The Crohn’s and Colitis Foundation of America (CCFA) called Escape the Stall (http://www.ccfa.org/escapethestall/). The face being put to the campaign is Amy Brenneman who is known from such shows as Private Practice, NYPD Blue, and Judging Amy.

First, I applaud Amy for coming out of what I call the IBD closet. It is great to have another face to the disease. I am also very happy that the CCFA is finally putting ads and stories out there nationally. IBD is usually talked about quietly in dark corners. CCFA is now bringing out into the open and I am very happy and thankful for that.

I had read the reason for why they went with this campaign and at first it didn’t bother me. I admit I have used bathroom humor in the past as I have a page on Facebook called Bathroom Talk. But as I look into myself, I know I did it as a way to cope.

Over the past year I have learned so much about IBD. Crohn’s and Colitis is no laughing matter. Yes, a lot of us use laughter to cope with our chronic illness, but in no way should the illness be looked upon in a funny way. As the ads show, we spend a lot of time in the bathroom. Anyone with IBD knows this is a reality..but it is a small part of the disease. And this is where I come to the realization that the CCFA ads are not a good idea.

So many people with IBD are sick. They have no energy. They can’t do simple things like get out of bed. Some people are in constant pains. Belly pains, joint pains, muscle pains…just overall pain. There is nausea, fevers, rashes, and eye problems. We take horrible medicines that give us really horrible side effects with some of those being untreatable cancer. Many people with IBD have numerous scars from many surgeries. Some people spend months in a hospital bed hooked up to tubes. Many suffer from drastic weight lose and look like walking skeletons.

Now you are probably thinking, “Wow, people with IBD have it bad”. Well, yes we do. But looking at the new ads, all you would think is that we spend a lot of time on the toilet. When people put out ads for cancer we see bald people hooked up to chemo. When there are ads for emphysema we see broken down people hooked up to oxygen tanks. The no smoking ads in NYC show people with amputations, trach tubes, and just looking horrible. So where is our graphic ads?

When it comes down to it, seeing an underweight person with IV’s and an NG tube laying in a hospital bed with some surgical scars would be more effective than saying “Hey this person poops a lot. Help them out”. I recall when I first got diagnosed as a teenager with Crohn’s that my doctor told me that I would most likely have at least one surgery in my life due to the disease. Where is that fact in the ad.

I am grateful for all that CCFA has done and continues to do. I will be volunteering this year for their Take Steps walk and hopefully for Camp Oasis. But I have to say that I am shamed by their new and first national ads.