[Warning: This blog post is not for literary critics, squeamish family members, or Puritans who swoon at swear words.]
When I started this blog, I promised myself and my readers two things: 1. I would be completely honest and 2. I would provide regular content. I’m sorry that I haven’t posted a new blog in a week, but I’m about to make up for it by being honest in ways that will make you blush.
My gastroenterologist called me an overachiever, yesterday. He asked me if there wasn’t any part of Crohn’s I wasn’t going to experience and I laughed, but the truth is, I wanted to cry. Especially because I was sitting down.
A week or two before the sacred Super Bowl holiday, I developed an abscess where the sun doesn’t shine. I spent days watching TV in bed because I couldn’t sit up and it was an all-consuming pain. My gastroenterologist sent me to the emergency room to have it evaluated by a string of complete strangers who cycled in and out of my curtained room to give me what seemed like a never-ending rectal exam. (At one point, I’m pretty sure the IT guy stuck his finger up my ass.) I was put on the dual super-Crohn’s antibiotics, Flagyl and Cipro, and told to soak my rear end in hot baths.
I was referred to a colorectal surgeon who seconded the Flagyl judgement, even though by this point, it was making my life a living hell. One night, I woke up choking on the contents of my stomach and spent days sick to my stomach with increased diarrhea, killer headaches, dizziness, and a fuzzy tongue. Yes, folks, a fuzzy-ass tongue. I knew I was on my way to a nice case of thrush; and to top it off, I started experiencing heart palpitations every 10 minutes. My heart was flip-flopping in my chest and my fuzzy tongue was cracked and bleeding. And my ass still hurt. (This is the part where I fall to the floor on my knees, raise my fists to Heaven, and scream, “Why, Lord, why?”)
I finally said, “Fuck the Flagyl,” and made an appointment with my general practitioner because my heart never stopped doing the samba in my chest. She gave me an EKG and told me that there was a small change that indicated that my heart wasn’t getting enough oxygen. So, she sent me home with the instruction to go to the ER if I felt any chest pain or shortness of breath.
I immediately started to feel pain every time I took a deep breath. One does not simply tell Christina to watch for a symptom and then expect her to not experience it. After a few panicky moments, I mentally slapped myself across the face and told myself to calm down. I had an echocardiogram on Monday and am still waiting for the results, although the flops have thankfully slowed down.
I tried to go on with life as usual and met some lovely friends for dinner Sunday night. We ordered a yummy green papaya salad, and when it arrived, the fruit was cut in long, hard shreds. When I brought the first forkful to my mouth, I thought, “Wow, I’ve come so far. If I ate this two years ago, I would end up with a small bowel obstruction. Thank God my last surgery fixed that problem!” I then proceeded to eat the shit out of that salad while giving myself multiple pats on the back until I woke up later that night, nauseous, my abdomen cramping in familiar and unwelcome sharp waves. The pain gradually decreased throughout Monday and I realized with great, sweaty relief that I had managed to avoid a trip to the ER.
Later that day, I ate something soft to be on the safe side and the pains came back. And then they went away. And then they came back. And every time I ate, I felt nauseous; and every time I went to the bathroom, the pain that wracked my body inched me closer to desperation. Thankfully, the pain has lessened, but I know, now, that I can no longer pretend that my bowel isn’t narrowed again–whether by inflammation, a new stricture, or outside adhesions from past surgeries–and that everything I’ve gained in the last two years is slowly falling away.
On Thursday, I put these pains in my back pocket and saw my colorectal surgeon for a check-up. I was prepared for the worst because things have only gotten marginally less painful in that area. She told me I had a fistula and that it’s clear that I now have perianal Crohn’s disease. In the last seven years, my disease has never ventured from my small bowel, and now it’s attacking areas that I hoped it never would. She told me that I will need to have outpatient surgery, where she will remove the infected area and place what’s called a seton through the fistula to allow it to heal. She encouraged me to go back to giving myself a Humira shot once-a-week, no matter how much it costs.
I saw my gastroenterolgist the next day and he agreed wholeheartedly. Not only did he recommend going back on weekly Humira, but he prescribed Imuran as well. He said that it’s obvious that my disease is “very much” active, and that we have to do what we can to get it under control, but there’s no guarantee that these medications will help.
When I first started seeing this doctor less than a year ago, I had very high hopes that took a nose dive over Christmas. I brought up the fact that I first started having rectal pain during this time period, and that he told me that my symptoms were attributable to my IBS and not my IBD. He then said he was sorry for making a determination based upon my blood work results and for not bringing me into his office immediately.
We then discovered together that some of the details I gave the nurse before Christmas–that I was bleeding and my joints were red and inflamed–were somehow lost in translation. He looked at me with genuine surprise and said, “I wasn’t told that. I am so sorry.” At that moment, my faith in him was restored. It takes a lot for a doctor to apologize, and he didn’t even hesitate to say that he agreed that my flares were not measurable by traditional blood work, and that he admired the way I was coping. He said that he will do what it takes to get me through this rough patch and to “the other side”. When I voiced doubt that I would ever reach remission, he told me to never doubt that there will be an “other side”.
I am going to hold onto this hope and keep my fingers crossed that the Imuran will help the Humira kick me into a glorious period of pain-free health. I have to believe that one day, I will reach the other side. I just pray that the path isn’t too rocky, and that I don’t have to cross through too many surgeries to get there.