Image by ianmyles via Flickr
I feel like I am under attack. After so many years of Crohn’s Disease, you would think this would be nothing new to me. CD is an autoimmune disease, after all. My immune system thinks my digestive system is the enemy and has been waging war on multiple fronts for decades.
My problem, though, is that even though I’ve had this disease for over 20 years now, the diagnosis itself is a relatively new one. My acceptance of that diagnosis is even newer. If you had asked me four years ago if I suffered from irritable bowel disease (as if that comes up in everyday conversation), I would have replied, “I used to.”
You would have looked perplexed and asked, “How is that possible. There’s no cure for IBD.”
“There is if you have ulcerative colitis,” I would have responded, quite pleased to tell my story of survival. “I used to have ulcerative colitis, but I had my colon removed. No colon. No more ulcerative colitis.”
That all changed when my gall bladder died in the spring of 2007. Yes, it really did die. It was working fine one day (letting me enjoy peanut butter and all those other not-necessarily good for you foods), and the next day, I was on the phone with the GI and the PC (really, any medical professional who would listen) complaining of pain and nausea like I haven’t experienced since before they took out my nemesis, the colon.
After weeks of testing, the nausea was so bad that Hubs rushed me to the ER, at which point someone finally read the results of the last test and said , “Oh, her gall bladder isn’t working. We’ll need to take that out.”
“Finally,” I thought, “Relief from the pain.”
Two months later, I was still complaining of pain in my upper abdomen–the same place that hurt during the gall bladder incident. So, off I went for several more rounds of CT scans, MRIs and ultrasounds. They all came back negative. Another eight months passed (yes, it took that long to run the tests and say there wasn’t anything there) before my GI had the bright idea that maybe this was somehow related to my original diagnosis.
Finally, I made my way to Dr. G., a colorectal surgeon who specializes in Crohn’s Disease. She even travels outside the country to run research on treatments. (The fact that she can’t do them in the US says something.)
Anyway, before Dr. G. would see me, she asked to see the records from my original surgery. After much begging and faxing, the records finally made it from PA (where I had the surgery) to KY (where I live now). She looked at them, then looked at me. She looked at them again, and then back to me.
“Did anyone ever explain to you the pathology of your colon?” she said, as if she was asking me to start discussing the latest subject of our book club.
“Not really,” I replied, because no one really had.
Apparently, after they took the diseased organ out of me, they took it to a lab where some tech cut it into little pieces, put it under a microscope, then wrote “indeterminate colitis” in my file–which is code for “misdiagnosis.” The results of the pathology, Dr. G. explained, were more consistent with CD than with UC. “You probably never had ulcerative colitis,” she said, “but let’s do a really expensive blood test to be sure.” (Maybe she didn’t say it exactly that way, but that’s what my insurance company said.)
So, we did the really expensive test, and yes, it showed that I most likely had and continue to have Crohn’s Disease. Dr. G. put me on some potent medications because I had gone untreated for so long, and I started to read a little about CD.
But even after all the new meds, countless endoscopies to stretch strictures and two more surgeries to remove them (strictures are a common complication of CD), I don’t think I ever truly believed the new diagnosis. Those strictures that needed removed and repaired and stretched were both at the site of my original surgery. That surgery was done 13 years earlier. They do it different now, my denial kept telling me.
I didn’t start to believe Dr. G. and her blood test until about two months ago. Back in February, I started experiencing a lot more pain than usual. It was in a new place (near the liver) and much more intense than anything I’ve felt for a while. Of course, I did more tests–MRCP, ultrasound, CT scan–that all came back negative. My GI gave up and said he wouldn’t see me again until I made an appointment with Dr. G. (I think he thought this new pain was all in my head.) Dr. G. took a look inside, and gave Hubs her report.
Even in my drug induced state I remember what she said. ”There’s a small patch of Crohn’s Disease in her small intestine”, she said. That means she saw it. For the first time, there is evidence (not just a mystical blood test), that I have Crohn’s Disease. I have a disease. I am sick….and I’ve been untreated for decades.
My bravado is fading, and I am tired. I look back at all that has happened, and I am tired of it all. The medicine, The doctors. The tests. The research. The constant lying when asked, “How are you.”
I’m sick. That’s how I am.
Next time, we’ll talk about my latest diagnosis–the one that was presented by that unbelieving GI just five days ago. I can’t get excited to write about it yet. I promised I wouldn’t be entirely negative in this blog, and I have a feeling that’s where it would turn if I continue today.
Let’s just leave it at this…I am under attack, and the enemy is me. That is life with Crohn’s Disease.