You Pray. You negotiate. You compromise.
“God, please get me through me today!” Then it’s “OK Lord, if I can just make it through the summer…” or “finish one more project”. You begin to make deals with your body as if it is a separate entity. “I will give up ANYTHING to feel better”. My personal favorite, is trying to calm yourself down when stressed before you feel the anxiety butterflies in your gut turn into fireballs of fury. You don’t want to hear that mental battle. It is really more of a pleading–as hopeless as trying to hold onto a man that isn’t yours.
In 2012, New Year’s Day, I had my longest flare yet. In the past, I could load up on steroids, taper down within 2 months then continue with a maintenance medication for about a year. I had never had much response with the Asacol (mesalamine) for maintenance, but took it anyway. Imuran (azathioprine) had worked fantastic for me. At a low dose of 50mg, my body would recover from pain and inflammation, and I would appear disease-free for years at a time.
Not this time. I had been medication-free since having my third child in 2010. There were no warning signs with this flare. It just hit me! Before seeing my doctor, I immediately cut out all added sugar, drastically reduced my complex carb intake, and stopped all alcohol to see if this would help. (I had taken a food sensitivity test a few years back that showed high reactivity to these items). Within three days my bleeding stopped. All bloating from my midsection disappeared and the cramping was lessened. I did well for a couple of weeks, actually even thought I cured myself, but then the disease hit back with force. More blood, more cramping, more mucosa. So, we (my gastro and I) went up on the prednisone, up on the Imuran and waited. I would do well for a few weeks this way. Then symptom flare all over again, always worse than the last time and leaving me to repeat the cycle of increasing medication dosages.
I noticed during this time that hormones had a huge part to play. Each month that my flare worsened coincided with the arrival of my menstrual cycle. I mean, all hell broke loose! I mentioned all of this to my doctor but the only response was “time to look at other options”, meaning the next drug option. Let me note right here, that it makes perfect sense to figure out the root cause or at least the aggressor(s) in your disease. I thought we had some pretty interesting findings, however doctors only know what they know. That is to say, your physician is only going to take you as far as his knowledge goes, and that’s ok. But know that. Know that you may have to seek out a specialist in that disease or another doctor to overlap yours (i.e. an endocrinologist, an internist, etc) to fully cover all the issues affecting you.
A Prometheus lab test showed that even at two and a half times my normal dose of Imuran, the drug was at a subtherapeutic level in my body. I would need much, much more if it were even going to work. Why wasn’t it working? Why was my dose subtherapeutic? No one thought to explore that. Just move on to something else. My options at this point were Humira or Remicaid.
I changed doctors. A tough move. I had to know what else was out there and I wanted to find someone to work WITH me to figure out this Crohn’s mess. Someone who would listen to me when I tell them what is going on and help me to explore what could be happening with my body. Considering the current state of managed care, I knew this was asking a lot.
I found a doctor. Likable, honest, listens, and had a different approach. But he did agree with the last, in that if I didn’t get better soon we needed to look at the biologics. Now, again, I am a pharmacist and a scientist to my core. I am NOT against drugs helping you to live a better life. I do however, think you should exhaust the obvious options before putting something potentially adverse into your system. Face it, the bigger and better you go, the more dangerous it can be. By the time October rolled around I had not improved. I had suffered all year long and it was taking its toll on me physically and mentally. I was angry, bitter, slipping into a depression and getting worse at hiding it. A casual talk with a neighbor revealed her teenager’s struggle with Crohn’s since childhood and her recent improvement after seeing a holistic practitioner. I thought, “Been there, tried that” and wished her luck. Forgot about the conversation until my next appointment with the gastro.
He and I agreed to prepare for infusions of either Remicaid or the Humira (depending on what, and if, my insurance would cover). The next few weeks would be tests to make sure I was clear to begin. I left the office, sat in my car and cried. It’s not that I thought I would die–I just felt defeated, and what better place to have a pity party than inside your car away from home? I suddenly remembered the conversation with my neighbor, and called her for the NAET doctor’s information. What did I have to lose?
I’m not going to lie. The NAET process seemed a little sketchy to me at first. To this day, I still find it baffling. What does she actually do? How does it all work? Don’t know. Don’t care. All I do know is that within a week I noticed less pain and shortly after I was significantly better. So much so, that I was able to put off the scheduled infusion. During my NAET visits I still continued my prednisone in order to taper down properly, even though I had already stopped bleeding since beginning the visits. The NAET doctor addressed my food sensitivities as though they were allergies to my body. Not just the items I had known to avoid since being diagnosed 14 years earlier. Geez, there was more! I was reactive to so many things that my gut was in a constant state of turmoil! Eggs, dairy, all forms of wheat, sugar, nearly every vegetable and I’m not even going to list all the vitamins and minerals!! For example, I was taking B complex to give me energy and also iron due to my loss of blood, not knowing that I was reactive to both.
Can you imagine? What the heck was I supposed to eat?! When you have time, look up the NAET process, it is simple yet complicated to understand. More on that later from me. Nevertheless, I felt so much relief, my gastro was happy for me but made me agree to follow his course of action should this “trial” of mine fail. For the first time in a year I was off of the prednisone AND the Imuran. Two months later, believe it or not, I signed up for my first half marathon!
I am not saying that the method above is a cure, but it has helped me to live symptom free for a year now. Crohn’s and Colitis are complex diseases affected by many possible components like stress, food, alcohol, environment, and genes. I still have to be careful. It is also important to know that changes you have to make are really for a lifetime not a short while. Every step we take to address our individual issues with these components is a step to wellness.