I hosted an informal chat on Tuesday night for fellow IBDers with two of my friends, Sara and Jaime, and there were so many interesting things that were brought to the table that night. One thing in particular that I found interesting and a bit shocking was the fact that the majority of people who suffer from ulcerative colitis or crohns disease say that the emotional ramifications of their illness are harder to deal with than the physical pain.
When the Crohns & Colitis Foundation of America (CCFA) came out with their new ad campaign, “Escape the Stall,” I had a huge problem with it as I wrote in this post here (http://keepingthingsinsideisbadformyhealth.wordpress.com/2013/01/10/we-react-to-the-new-ccfa-ad-campaign/). In the video I did for the Intense Intestines Foundation’s Never Stay Quiet Campaign (http://keepingthingsinsideisbadformyhealth.wordpress.com/2013/01/28/9minute-video-about-what-inspired-me-to-start-opening-up/), there was a part included that was meant to be for a separate video highlighting how diseases like ulcerative colitis and crohns disease are not just illnesses that affect a person’s bathroom habits. As I began really thinking about what it means to have IBD, I did start to understand that the intent behind the CCFA’s new ad was to bring out into the light the parts of living with inflammatory bowel disease that keep people hiding and that unfortunately is what happens “behind the stall/bathroom door.”
Living with inflammatory bowel disease is an emotional rollercoaster. You have no idea how long the good days will last. It is an enormous amount of trial and error with medications, food and just lifestyle choices in general. The amount of missed events and special occasions is far too plentiful in the life of an IBD patient. The lack of control can leave you feeling helpless and frustrated. The anger and feelings of frustration when nothing seems to be going right are all too common. The anxiety of not knowing when the next time you are going to get sick is, or needing to rush to the bathroom sometimes starts off in small doses but eventually can feel like a daily struggle.
How do we adequately spread awareness for these diseases that are so complex not only physically but in terms of the emotional toll they often take on the incumbent’s mind as well? I am working on an answer to that question but don’t yet have one.
For me, the physical pain I went through was unbearable. Thinking about it makes me really cringe and I think I blocked a lot out. But, I was able to handle it. There were a lot of times where the emotional pain was so unbelievable I really did not even want to make it through the next day. The majority of these times were when I was in the hospital. I was in so much emotional pain, in addition to everything else that I really just wanted some idiot resident to over medicate me so I didn’t have to feel the reality of life anymore. The physical part was a relief in a lot of ways because it stopped me from thinking. It became the only focus. I couldn’t think about how I had been just sliced open, was hooked up to a million machines and tubes or was unable to go home and felt like a prisoner when I was in agony. So that was the only plus side to having an illness that had BOTH physical and emotional pain (if anyone is looking for a positive here).
I know I am rambling on and I am going to stop yapping in a second. I guess the point I am trying to make here is that there are SO many parts to inflammatory bowel disease that make it beyond difficult to live with. The other night really brought to my attention what I always knew but I suppose haven’t really thought about in a couple months which was how much more there is to ulcerative colitis and crohns disease than bathroom issues.