Saturday, May 17, 2014
THE CANCER OF IBD
January 2011: It's 9am and I finally feel well enough to make my way to the kitchen. I have spent the past three hours in excruciating pain while also losing significant amounts of blood. The longest I was able to avoid la toilette all night was one hour and Prednisone had my mind racing for the time in between. I slept an hour or two. Hell, better than last night at least.
I look in the fridge and find myself frightened of everything I see.
"Do I eat the strawberries for their anti-inflammatory effects?
"No, they could cause a mechanical blockage."
"How about an egg with Spinach to help with my iron deficiency?"
"No, the spinach will have me in the bathroom every 20 minutes instead of every 40."
Today: I feel hurt that friends and family think I bring this on myself by what I eat. If they only knew how much excruciating thought went into everything I put in my mouth. If they only knew the cost of my organic grocery bills, probiotic bills, aloe vera pill bills. If they only knew that diet has oh so little effect on this genetic assault of my mind, body and soul. I know this because I haven't eaten in three weeks. I know this because I've tried every so-called "ulcerative colitis-friendly" diet under the sun. I know this because there is not possibly one more book I could read or one more diet I could try. This disease runs deep inside me. It's at my core. In my DNA. There is no running from it. There is no eating it away.
There have been many medically necessitated fasts in my decade with ulcerative colitis. Not because food is the cause, but because my digestive system was simply too wrecked to put anything into it. This time around, I can't eat because of the pain. I can't eat because of the fear. I can't eat because my mind won't let me. Each time I put something into my body to nourish it, I am punished with mind-blowing pain and a fear that it won't make its way through. That I'll land myself another trip to the hospital to have yet another surgery to save my life from yet another small bowel blockage. This is no way to live. I don't wish this disease on the dead.
IBD is not IBS. IBD is not just diarrhea. IBD is not caused by the patient. IBD has deadly complications. This is why, after 9 years of silence, I decided to speak up in 2011. No one knows how horrifying IBD is because we patients rarely have the guts to face our disease and almost never have the extra strength to publicly discuss its brutish consequences on our daily life, our family and our conscience. IBD is a cancer without the sympathy. We IBD warriors have done chemo, we've been through the endless surgeries, the nausea, the pain, the fear, the vomiting, the complete disruption of life, of self, of sanity. But IBD and Team Challenge aren't ringing in the research funds like Susan G. Komen because the misconceptions about these diseases run deep. Sure, some Crohn's and UC patients with mild disease can achieve remission with diet and alternative therapies, just like some cancer patients. But IBD isn't caused by food anymore than cancer is. And I don't encounter too many cancer patients who are asked to undergo fecal transplant. IBD really is such a "shitty" disease.
But the point is, these stigmas run so deep. Perhaps the most painful part of this disease is not the physical suffering, but the uneducated and downright cruel assumption that we do this to ourselves. That my disease is caused by me. It's like having cancer, but having everyone look at you like there is such a simple fix. Like YOU are the cause. YOU are the problem.
But, the simple fact remains that there are too many adults and children living in fear every day. Too many of us are unable to live because there is no cure. Until a cure is found, IBD patients will live with the consequences of these diseases from the moment of onset to the moment of our death, with often nonexistent periods of remission.
Of course we should be raising money and awareness for the diseases that have high chances of sending us to the grave. But shouldn't we also give thought to the diseases that have so many trapped in a living grave?