As said in the last post, I was intially diagnosed with Crohn's disease in Sept 2011, after an intial work up and colonoscopy. To say the least, that diagnosis was not the news I thought I'd hear after waking up from the sleepy-time medicine post the colonoscopy. I had started feeling sick the summer of 2011. I had an sense of fatigue, bloating and what seemed like an uncanny ability for dress pants to not fit well. I had started to have transient traveling abdominal pain that I just knew was an ulcer. As a healthcare professional and a really good nurse, I figured I knew my body and I just KNEW it was an ulcer. Work, although wonderful at the time, was stressful at the time and I figured that common symptoms would be a common illness. However, things were not as I expected.
When reflecting on how I was initially diagnosed, the process was rather quick. I started really feeling ill in the summer of 2011 and in September of 2011 I was diagnosed with Crohn's. Part of this was due to some severe labs of a low Hemoglobin which means a low blood count. After some reading of ccfa.com, I discovered that most people who have Crohn's or Ulcerative Colitis are sick for sometimes years before they get answers. They have to live in a in-limbo time in which they know they are sick, but they don't know why. I am grateful, so grateful that my story was different.
However, after this last bit in my tiger-belly journey, I realize that I was sick for years--but didn't know it. You see, the last few months I had started to feel ill again. After about a year on my immunosuppressant ( mercaptopurine), I had started to have an increase in abdomen pain, nausea and heartburn. I saw my GI specialist and he suggested a colonoscopy. So, about 3 weeks ago, I had another scope done. Although very little fun can be said about colonscopys, I was anxious for the procedure. I wanted to see if my insides were looking better. I wanted to know that my immunosuppressant medicine was working. I wanted to know if there was a reason that I was feeling sick again. I figured that there would be 2 possible outcomes of this test. a) "Great news Ashley, your insides look grand. The symptoms you are having must be related to a flare +/- anxiety, stress or irritable bowl syndrome. Continue with your medicine. You are in fact getting better" b) Your insides still look inflammed and you don't have good healing. We need to change your medicines in order to keep you healthy . "
However, as this post is entitled, instead I was greeted with a second round of unexpected news.
I woke up from the sleepy-time medicine and was much more confused that after my first colonoscopy. For some reason I was really confused to why I had oxygen on. I was still feeling flushed, overwhelmed by the brightness of the hospital light and pretty happy to see my parents at my bedside. And then before I knew it , my doctor was at my bedside. He led off with a positive note, "good news", my colon (or large intestine ) looked great. My 6-MP medicine had been working well. I had obtain good healing of the skin tissues and everything looked good....until... until he tried to pass the scope up the terminal ileum. This is the area when the small intestine connects to the large intestine. This area was so narrow due to scar tissue that my doctor couldn't pass the scope up ( Usually in a colonoscopy they travel up a small way into the ileum just to take a small peek). Then the real important news came. So important, that my parents called the Boy at work to let him talk to my doctor. I would need to have a small bowl follow through test to examine the extent of this narrowing or stricture. Likelihood was very good that this would require surgery and I would need to see a GI surgeon sometime after the holidays.
Surgery. The news and option that I didn't expect to happen this soon. 75% of patient's with crohn's have surgery, a majority of these patient's have 1 or more surgical procedures during there life with this chronic disease. I have been afraid of surgery since I have been diagnosed. My goal in my medical treatment has been to avoid surgery at all cost. As a patient, I'm not crazy about the idea of surgery. As a nurse practitioner whose background is in medical management--I'm really not crazy about surgery. It's good and fine if it's the only option-- but surgery requires hospital stays, IVs for longer than a few hours, beeping IV lines, risk of infection and time off of work. How did all of my health come to this needing of this surgery. I had been taking my medications, following medical advice. I hadn't even been sick for more than a year. How could things have gotten this bad in this time frame.
Then it hit me. My diagnosis had happened rapidly from the time frame where I had realized I was sick. But when I look back over all my health and general feelings since college, I had some symptoms of my autoimmune disease right after graduation. That was back in 2006. I remember having some belly pain, heartburn and similar symptoms while I was a RN at the James from 2006-2008. I started having night sweats some time in 2008-2009. I had been sick for a while. And the scar tissue was there to prove it all in my terminal ileum.
A week and a half ago I had the follow up study, and the news from that was better than expected. I was worried and figured all of my medical tests would bring bad non-expected results. My small intestine looked good, except for the terminal ileum. I talked with my GI specialist and I have an appointment with my surgeon on Dec 28, 2012. I am so grateful to have these details and appointments set up before Christmas. Anxieties over what the plan could or could not be have been making me a little crazy. So, for now I can stop, enjoy a few days off of work and enjoy the holidays. I can focus of family time and celebration of Jesus' birth. I can relax for a while instead of being crazy anxious Ashley who is trying to plan the next few steps in my medical care.
For now, I can know that I will have surgery sometime in the beginning of 2013. But for now, it's 2012 can I get to celebrate other unexpected news. The unexpected news that so many years ago Jesus was born and brought light into this world. The darkness doesn't get to win because Jesus came as a baby, fully man and lived. He ended his life my sacrificing himself for you and me by taking on all of our sin. That's a pretty amazing story of hope.
These last few weeks have been hard in our household as my husband and I try to figure out what it means to walk through scary and unexpected times. But, as I sit and reflect on it, I choose to during this advent time, remember that the Light came to earth once and The light is coming again. There is brokeness and sickness and pain here on this earth.... but the Light came , the Light conquered death and illness and brokeness and sickness. My sickness, my need for healing via surgery and medicine, my small time to by sick and have pain now, will all pass away. I have two choices, to stay in a zone that has fear and anxieties and no presence of peace of God, or to be with Him during this time. So, I choose to be with Him. I will be with Him and he will guide me through this scary and unexpected time. His Light with surround me, keep me safe and bring me closer to Him.
