Camp Oasis « A Guy With Crohn's

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.

For today’s post I had the choice to write about a Health Activist Soapbox or this…and I think a lot of people will choose the soapbox so I am going with this one.
List of 3 things. Oy. Where to start. I think of talking about 3 of one topic I will talk about one of each topic.

Topic 1 – What am I thankful for? Very strong question and with Thanksgiving just around the corner this is on my mind. I have gone through so much this past year and there is so much to be thankful for. The most recent thing is that I made it through hurricane Sandy without major issues. I can say I am still alive and in pretty good health. I have a job in times when unemployment is high. But my answer to this question…I am thankful for my doctor. First..if you haven’t yet, go read my previous blog on day 3……….ok, your back. Now you know where I am going. I am thankful for my GI doctor. So many patients have doctors that don’t listen and worst off don’t care. A lot of docs just seem to go through the motions and don’t seem real invested in your health. My doctor though is different. He listens. Not just to what I have to say but he listens to my advice. He doesn’t spew advice from medical books. Instead he bases his thoughts on current research. Recently I wanted off Humira and wanted to try out Low Dose Naltrexone. He had no experience with the med, knew nothing about it as a treatment for Crohn’s, yet he did his own research, listened to my concerns and decided to work with me on a solution to healing my Crohn’s. I don’t know if the medicine will help or even if I will be able to tolerate it long-term but my doc is letting me experiment with it and he is learning at the same time. He is great for all that he does and I can tell that if he takes the time to do research for me then he is doing it for other patients also. And for these reasons I am very thankful to have found him.

Topic 2 – What am I excited about? This up coming year I am excited for so much. First, instead of walking in the Take Steps walk I want to volunteer. I want to be able to give back some. Also, I am not great at fund-raising so this is my way of helping out my cause. I am excited to work at the walk and talk with others affected with IBD. But my excitement doesn’t end there. In 2013, for the first time, I want to volunteer my time at Camp Oasis. This is a camp that is held for a week in the summer for kids with IBD. Most of the staff and medical team have IBD and the kids can look up to them and see that there is hope to living a normal life. This is the reason I became a health activist. I grew up alone with my disease. This year I said to myself that I didn’t want anyone to have to go through what I did. I wanted to help people, especially the kids know that they are not alone. What better way to do this than to talk directly with them at Camp Oasis. I hear so many stories from people on how much fun it is working there. I want to finally experience this joy and if all goes well..I will. Just thinking about it now gets me excited.

Topic 3 – What has inspired you? For me it isn’t a what but who. Again, if you read my blogs, you probably know this answer already. So go ahead and look back over my previous blogs. If you don’t have time, just look at the guest post I did for WEGO Health. All the names are there. Sara, Kelly, Maggie, Charis, Jackie. These were just the first batch of people to truly inspire me to speak up and do what I now do. As time goes on, I have met other people and heard their stories. Now I have other people inspiring me….Alyssa, Pat, Amanda, Michael, Peter, Claire, and so many others. Now, I don’t want to put last names because I don’t know who wants their name out there..but if you run in the circles I run in, you probably know these names.