Five Years of the Unknown

FRIDAY, DECEMBER 17, 2010

**reposted**


Five Years of the Unknown


What I love most about my blog is that I have made a book for each boy for every year I have blogged.  The boys love reading their books and seeing their pictures in a book.  I love knowing all my stories are documented, never to be lost again!  I also really enjoy reading back over the stories of the boys myself.  Since the boys will have these forever, I thought it important to go back and pick up some old stories for them to keep.  Some good and some not so good, but all of them memorable.  Since I have been diagnosed with Crohn's Disease, unfortunately, I have also had several friends and friends of friends diagnosed with Crohn's who come to me with lots of questions.  So, I decided to chronicle my journey with Crohn's disease.  Not only do I want to help anyone that might need it, but document my history should my kids ever need it.  I pray every day that my kiddos will never have to go thru what I have gone through.  But, just in case, the history will be here for them. The first time I ever remember having pain in my stomach, I was either a Junior or Senior in high school.  It was nothing great and nothing a little swig of Maalox couldn't cure.  Those pains were sparse, but became less sparse and more painful by the time I was a Junior in college.  The summer after my Junior year of college, I had my first endoscopy, where they found multiple ulcers.  At that point, I thought I was reliving my dad's terrible bout with ulcers.  Before I was born, Dad had an ulcer and there was no such thing as Prevacid then.  He had horrible abdominal surgery to remove the ulcer, which didn't end before he got Staph and almost died.  All for an ulcer.  I hope some day to be in awe of the surgeries I endured because a simple solution was invented like Prevacid. I left college after my Junior year to head to graduate school at Washington University in St. Louis.  While it was a major expense for my education, my health care was covered 100%, including drugs.  This was a huge blessing at such an incredible medical complex.  Things were definitely becoming more difficult to ignore with lots of burning pain, increasing nausea and stomach upset.  I had a wonderful doctor who worked very hard to determine the root of my problems to no avail.  On top of endoscopies and colonoscopies, I had to take a test that he acknowledged was a bit outdated, but would provide him with information regarding the amount of acid in my stomach.  He thought I might be over-producing acid.  To this day, I will never forget that wretched test.  My mom was, of course, there with me.  In order to take the test, they had to put an NG tube up my nose and feed it into my stomach....while I sat on the edge of the table wide awake.  It failed terribly time after time as that poor nurse came at my nose with a tube.  I gagged and puked and cried a whole lot.  I remember telling my mom that I would rather be giving birth than enduring that.  I will still hold to that after three deliveries.  It was terrible.  Eventually, they called my doctor and he put me out in order to place the tube.  In the end, my acid levels were normal. When I left St Louis and my doctor at Wash U, we had very few answers, but a large amount of documentation that I had lots of ulcers in my stomach and in my small intestine.  He told me that at that time in my life, I was under a lot of stress with school and studying and things might improve when I finished school.  I didn't really buy that, as school was very hard, but I didn't tend to overstress...there was something more. I arrived back in Oklahoma in 1998 to complete a rotation at St John Medical Center that ended in a job for me.  My health was declining rapidly.  I vomitted a lot.  I had excruciating pain when I ate anything more than a small quantity of food at  a time, especially bulky food like steak and partially cooked veggies.  I was so desperate for a good doctor having now been in my third city with no answers.  God completely guided me to the best one.  I know this because not only did I love my doctor, I also ended up selling GI drugs later and it was the consensus by everyone in town that Dr. Aran was the best.  When I found Dr. Aran I found a doctor that truly fought for me.  From the beginning he told me he thought I had Crohn's Disease, but the seemingly hundreds of scopes always turned up negative.  So, he treated me with Crohn's medications.  One after another, they didn't work.  I was growing hopeless. Night time was the worst.  When I went to bed, my stomach hurt the most.  I remember calling my parents in tears not knowing how to make the pain go away.  I had low-grade fevers most days.  With a very physical job as an Occupational Therapist, I dragged myself to the gym every day and worked out for two hours.  Excercising was the hardest thing for me to do with no energy and with a fever, but it was the only thing that made the pain in my stomach lessen.  When I would see my doctor, he would ask how I was and I would say, "Good."  What I know now to be "normal" is nothing close to what I was feeling then.  I had been in so much pain for so long that I didn't know what "normal" was.  "Good" was certainly a relative term.  When I saw him in the day, however, I did feel good.  My food had been limited, I had excercised...it was the night time that was brutal.  I slept sitting up most nights. With lots of drugs, hundreds of doctor's appointments, x-rays, swallow studies, CT scans, MRI's, and scopes, I was still in so much pain.  I remember discussing my finances with my dad and telling him I had no extra money to spend at the end of the month.  All spare change paid for my medical care...all of it. In December of 1999, my mom and sister and I were on our annual Christmas shopping trip in Dallas.  I spent most of the time resting in the car while they shopped, as I had fevers and was exhausted.  The last morning there, we had breakfast and all of mine came back up.  Gratefully, I had an appointment already scheduled for that Monday for yet another endoscopy.  I was pretty used to the whole thing. All the staff knew me and took very good care of me.  My mom was in the waiting room ready to take me for my "Sympathy Shoes" post procedure.  I remember coming "to" after the scope and seeing the look of worry on Dr. Aran's face.  Then I saw my mom.  He was talking to my mom and said he couldn't even get past my stomach.  My stomach was swollen shut.  I heard the words, "surgery" and "quick" and my world started to spin.  I had to have surgery at the hospital where I worked, which was not the hospital where Dr. Aran worked.  He told me to research the best GI surgeon at St. John and he would do the same.  We would talk the next day.  We both came back with the same name, Dr. Melichar, so we proceeded with making that appointment. Before the week was over, I found myself in Dr. Melichar's office.  My dad and my sister both showed up, which sort of made me laugh, but it ended up being extremely helpful to have three sets of ears for what we were about to hear.  Initially, Dr. Aran stated that I would have to have laproscopic surgery...surgery without cutting me open.  As I sat on the table and listened to what Dr. Melichar and Dr. Aran had decided together needed to be done, it sounded drastic.  I remember asking him, "And this will be done laproscopically?"  I love Dr. Melichar as much as I love Dr. Aran and he kindly and gently said, "No.  We have to open you up" like I was his own daughter.  By the end of the appointment, we were all reeling with what was about to take place and it was only two weeks before Christmas.  I looked at him and said, "I have to be in a wedding the week after Christmas, one of my best friends is getting married."  He scrunched his nose and said, "We'll see."

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