Sunday, November 13, 2011

Surgery #1

I was prepped and wheeled to surgery blind.  I wore contacts at the time and I had to wear my glasses, which they took away from me.  I could hear people saying, "Hi" to me as I was rolled to the operating room, but I didn't know who they were and it drove me crazy.  This was my home away from home and I knew a lot of people there.  It was comforting to know I had so much "in-house" support, but I wish I could have seen them :)

The first moment I remember was being in the recovery room.  I knew the nurse who was my recovery nurse and she kept leaning on the bed chitty-chatting with other nurses.  I couldn't speak, but wanted desperately to tell her to stop.  The pain was unbearable and every time she hit the bed it hurt more.  More meds! More meds! That's all I could say in my head.  The next moment I remember is being wheeled (still blind) into my room.  I could see the outline of my Dad and I said, "Hi Dad!" but he didn't respond.   I knew he was sad.  When the tech's moved me from the gurney to my bed, I am certain that was the greatest amount of pain I have had in my life.  I never wanted to make that move again.

I was in the hospital for 10 days...right up to Christmas Eve.  My mom had decorated my room for Christmas, as they thought we were going to be spending Christmas in the hospital.  I had a tree, Christmas music, friends brought ornaments, which we hung from the IV hook, greenery.  My room was happenin'.  I do remember it, but not clearly.  Most of my hospital stay I was full of pain killers...big ones.

The first day out of surgery, I had morphine shots in my hiney every couple hours, a morphine drip that came regularly and a morphine button I could push.  It was by day 2 or 3 that I thought the clock was made out of bacon and eggs and my family instantly called the nurse and told them to get me off the morphine, as I was hallucinating.  I was hungry and high...a bad combination :)

My life was full of angels those 10 days. My mom and dad never left my side.  They rotated sleeping on the hard couch every night.  My sweet friend, Casey, came up to the hospital and washed my hair in my bed every other  day.  It was the one thing that could make me feel good! Friends took care of my parents, who were an hour from home, by bringing meals to my sister's house.  Gratefully, my sister lived a block from the hospital at the time.  It was very convenient for my family if my being in the hospital had any conveniences.  All my dear, sweet co-workers came to see me throughout the day on their breaks and after work.  The nursing staff on the surgery floor were my friends, so they took amazing care of me and my family.  My experience from "heck" couldn't have been softened any more than having all the love and support of my friends and family.

As for how I was doing physically, I didn't know or understand.  I came out of surgery with a feeding tube, which was awful.  It hurt and cramped, but it was necessary for the healing to take place.  One of the residents, who was a friend, had the luxury of removing his first feeding tube...on me!  They were switching it out and he forgot to let the air out of the bulb that sits on the inside of me to keep it from falling out. "OUCH!" Yes, OUCH!  Being at a teaching hospital, I had lots of medical students in my room.  They, again, used my case as case studies for each of them, asking me questions about my history, etc.  I knew it was a bit unusual for a 25 year-old girl to be having such major surgery.  I didn't mind them learning on my body.  With my permission, of course, one of the residents gave my friends a run down on my anatomy before and after surgery.

The funniest part was that residents that I worked with on the trauma team, were my residents.  An interesting place to be moving from co-worker and friend to patient.  And a patient after an abdominal surgery at that.  What that means is that every day they have to ask and report if I had "passed gas" as they phrased it.  So, every day, a cute resident came to my room and as un-awkwardly as possible asked me if I had farted that day.  If it was a "Yes!" it meant that my GI tract had awakened and started working again after being handled in surgery.  Every day, it was "No."  It became a joke and funny discussion every day. I am sure they thought I was embarrassed and not sharing with them.  Until one day, an older resident, who I knew distantly, came to my room and before he could open his mouth, I said, "I did it! I did it! I passed gas!"  If it was any other resident, they would have celebrated my victory with me, but him, no.  He just hesitated and made the situation more awkward and said, "Well.  Good.  I am happy for you."  Bedside manner...failing grade.

I think I was released on the 23rd with all fingers and toes crossed because it was Christmas.  What I know now is that after my surgery, the surgeon found my parents in the waiting room and told them he did all he could.  The surgery was taking too long and they had to wake me up.  He anticipated that I would be back in surgery in the next month or so.  My surgery entailed resecting about 18 inches of my small intestine, an appendectomy, a vagotomy and re-routing my stomach, called a "rue-en-y" which gave me an additional exit hole in my stomach.

I went home with the feeding tube still inserted in  case of an emergency, but I was able to have liquids and soft soft food.  I had been working hard in the hospital trying to get up and walk each day and more as I neared my discharge date.  One thing was for certain.  Doing well in the hospital was a far cry from doing well at home.    I had no idea how hard going home would be.

Saturday, November 12, 2011

Emergency

By December of 1999, I was getting very bad.  I vomitted my meals on a regular basis.  Dr. Aran had me taking my temperature on a regular basis throughout the day.  This was eye opening, as I ran a low-grade fever almost all day long regularly.  I don't remember feeling so desperate, as much as I was just in pain and wanted it to stop.  I know people at work thought I had an eating disorder, as I often ran to the bathroom to vomit.  What I know now is that the inflammation was so great, my food just wasn't going down!  If it couldn't go down, it must go up.
My mom and sister and I go on an annual Christmas shopping trip to Dallas every year.  It was on that trip that I knew I was not well.  I spent most of the time sleeping in the car while they shopped and lost a couple meals while I was there.  I already had an appointment with Dr. Aran the Monday I returned for an endoscopy.  When he went in, my stomach was swollen shut.  I could barely hold water down.

I remember coming to and seeing a very serious look on his face and my mom's face.  They were talking quietly and I couldn't quite make out what they were saying. It was time for surgery and he wanted it in the next week at the very latest.  I was a little goofy coming off the juice, so my head was still spinning.  I was definitely in shock.  I saw a surgeon before the week was up and my surgery was scheduled for the next Monday, December 14th. 

When I met Dr. Melichar, whom I loved as well, I thought I was having exploratory surgery.  My dad and sister met me at that appointment and I am so grateful they did, as most of the information went in and out.  I was in a fog.  When he described all that he was going to do, I remember saying, "Now this is laporascopic, right?" I thought he was pretty amazing to do that without cutting me open.  He looked at me with very sweet and gentle eyes and said, "No, we have to cut you open."  Of course, at 25 years of age, my first question was how big my scar would be.  He pointed to his own stomach and said, "From here...to here."  From his belly button, to the middle of his rib cage.  Holy Hannah.  This was the real deal.  He went on to tell me that I would be out of work for 4 weeks and I couldn't lift for 6-8 weeks.  That's a huge deal for an acute care occupational therapist.  All I did was lift.  In the next couple days, I prepared to be gone from my life for at least a month and braced myself for surgery.

I remember being nervous.  I emailed a few friends that should know and was overwhelmed with the response from so many friends that the email had been forwarded to saying they were praying for me.  That was the first time I remember feeling incredibly humbled and moved to tears that so many people from so many parts of my life were praying for me.  It is hard to be on the receiving end.  Very hard.

The morning of surgery, my mom and dad picked me up from my condo really early.  I think I had to be at the hospital at 6am.  I remember the moment like it was yesterday when my mom and dad dropped me off at the entrance while they went to park.  I stood in the hospital I worked in, not as an employee, but as a patient...and future resident.  As I was processing the moment, a co-worker walked by and said "Good Luck!" and I burst in to tears.  My fear over took me from that moment on.

Tuesday, November 8, 2011

Dr. Aran

To think back now about how I felt then (about 12 years ago), I have so much more insight now.  I had a great deal of pain.  I didn't know how to express it to my doctor, but nights were very, very long.  My mom and dad would come with me to my GI appointments every once in awhile and when my doctor would ask how I felt, I would respond for how I felt at that moment, "I feel good!"  It made my mom crazy to hear me say that.  Especially, when I would call her in the night crying because I hurt so bad.  During the day, when I was up and moving, I did feel pretty good.  I don't think I knew what "normal" felt like, so even if I felt good, I was on the good side of bad...if that makes any sense.

I know I had the best GI doctor in Tulsa and probably beyond.  I knew I loved him, but when I became a drug rep and called on him, I learned just how much his nurses and staff loved him...that is the true test.  There are many doctors that patients love because they may have a great bedside manner.  However, having worked in the hospital and seen the "behind-the-scenes" in doctors' offices, bedside manner doesn't come close to indicating a doctor's skills.  There are many very nice doctors that I wouldn't let near my family members.  Gratefully, in Dr. Aran, I got nice and extremely skillful.

Week after week I would go see him, test after test.  There was always inflammation, always ulcers, but never once did any of the biopsies come back as a positive for any GI disease.  Dr. Aran was certain I had Crohn's, but couldn't verify it through biopsies.  So, he treated me as though I had Crohn's Disease.  I have just about taken all the conservative drugs for Crohn's.  That is another reason I loved Dr. Aran is that he was very conservative in my treatment.  He didn't take it lightly that he was prescribing me potent drugs.  He didn't dive into any treatment with me without explaining it completely and getting my approval.

Dr. Aran had me do stool samples all the time...my least favorite of his tests.  He was always checking to make sure I didn't have a GI bleed. I had more colonoscopies and endoscopies than I can count and blood work galore.  He was the first and only doctor who mailed me every test result from every test I had.  He wanted me to be armed with my own history and my own file.  He wanted me to know exactly what was going on with my own health.  He told me if I travelled to always have my file with me should I ever have any emergency.  And let me tell you, my file was thick.

I learned from Dr. Aran that as a patient, you have to advocate for yourself.  He can ask you questions, but miss the one question that needs to be asked.  You can't be embarrassed about anything. If you are seeing a GI doctor, I promise they have seen or heard so much worse!  As an OT in acute care, I worked with some painfully modest people and some that would stroll the halls with it all hanging out.  What patients need to know is that by the time the doctor (or therapist) is seeing you, seeing a new behind or hearing about poop is what he does all day long.  It doesn't phase him in the least.  You are the only one who is embarrassed and there should be no reason at all.  He CHOSE to be a gastroenterologist, which means, he chose to hear people talk about their poop!

Dr Aran would ask me all the time about the size and consistency of my poop.  I finally got to where I could answer without laughing.  But let me tell you how much I am able to help myself now.  At the time, when I pooped, it was long and thin.  (I told you I don't mind talking poop!)  Because I told Dr. Aran that, he deduced that I had major inflammation.  My intestines were so inflammed that there was very little room within the intestine for my bowels to move through.  By finally admitting to him that my bowels were thin, told him a lot of information.  I kept telling him I felt constipated, but I wasn't truly constipated.  I was inflamed...two very different problems with two very different solutions.

What Dr. Aran did do and no other doctor has yet to do was test me for Candida Yeast Overgrowth.  At the time, I had no idea what it was and asked him one day why he always included that in my blood work. He said that he was curious for me because my tongue was always white...a symptom of yeast overgrowth.  My blood tests always came back negative, but he told me many times how difficult it was to yield a true result in a blood test for yeast.  He was the first and the last to test me for yeast.  Yet, another fleeting moment where I could have saved myself from a heap of pain had the knowledge been available.  Quite honestly, I am not sure the research was there at that time.  But I do know that Dr. Aran was heading down the right track.

Hindsight is always 20/20.

Saturday, November 5, 2011

Tulsa-Bound!

I don't remember how many tests I had while I lived in St. Louis.  But Dr. Clouse said the same thing, "You are just at a stressful time in your life."  And that was how my increasing pain was left.  Wait until you don't have anymore stress and let's see how you feel.  After 3 years of graduate school, it was still there!

I left St. Louis bound for my final internship at a hospital in Tulsa.  I am from a small town north of Tulsa, so Tulsa was our go-to town.  I was moving home.  In fact, I really was moving back in with my mom and dad for three months while I completed my last internship.  I had plans in the back of my mind of finishing this up and moving back to Texas, Dallas or Ft. Worth maybe.  Soon, I thought, I would be back in God's country.  Again, in those three months, I don't have distinct memories of major stomach troubles or pain that are worth mentioning.  I am sure I had pain, as I remember trying to find a new gastroenterologist in yet another new town.  My mom  ripped a page from the city magazine that had the peer reviewed "Tulsa's Top Docs."  With nothing else to go on, I called a Dr. Peter Aran and asked to be seen.  I didn't know what an incredible doctor I was seeing and that the future with me and Dr. Aran would produce a wonderful doctor-patient relationship. 

My 3-month internship turned into a job opportunity that I didn't turn down.  I knew my health was volatile and I knew I should probably stick closer to home.  I loved where I worked and by the time the offer came around, I was thrilled to take the job.  I was finally employed!  I moved to Tulsa almost immediately and moved in with a dear friend from high school in a wonderful old condo.  We were all set to have loads of fun.

This was the time that I really remember my health getting bad. The pain was more frequent and more intense and my quality of life was certainly on the decline.  Praise the Lord I stayed in Tulsa.  My sister and her family were close, Mom and Dad were just an hour away.  At a time in my life when I was supposed to be striking out on my own and being independent, I really needed my family.

Friday, November 4, 2011

The Procedure From Heck!

I felt like I was in great hands with Dr. Clouse.  He always had students with him, which is where I first began to lose my modesty.  "Penny, this is so-and-so and he needs to perform his first ever in his life rectal exam.  Are you OK with that?"  That's not really how it went, but I was a student at the time, myself, and appreciated understanding patients, so I tried to be understanding every time student wanted to do their case study on me.  They wanted to know details about my bowels that I just wasn't used to taking note of, let alone discussing.  But this is the life when you have a disease of the bowel.  Every doctor always wants to know the scoop on your poop. Size, shape, consistency, frequency.  Even Dr. Oz will tell you how much your poop tells about you.  It really is true.  Fortunately, or unfortunately, I learned all this early on.  And I had to tell it over and again to all those students...and some of them were cute!

Dr. Clouse, however, ordered a very unusual test on me.  It was a test that I now know and understand to be a test for Zollinger-Ellison Syndrome, where your body over-produces acid in your stomach causing ulcers.  Even more "coincidence" (which I don't believe anything is coincidental) is that after I had my first big abdominal surgery, I left my job as an OT and became a drug rep, selling Prevacid, that treats many issues, but one being Zollinger-Ellison Syndrome. 

My faithful mom, who flew to St. Louis for every single procedure I had, flew up for this one.  In fact, I tried to tell her not to come because I didn't have to go under.  I am so glad she insisted on coming.  In order to test the acide levels in your stomach, they stick an NG tube up your nose and feed it to your stomach.  They gave me shots to make my stomach think it was eating and measured the acid production in my stomach.  That sounded so easy, but if they could have just gotten that darn (there are more choice words to use) tube up my nose.  The nurse was a bit nervous, which made me nervous, too.  She asked me to sit on the edge of the table and came at my nose with a tube.  I still can't believe they attempted that with me awake.  Needless to say, after far too many attempts, it didn't work.  It hurt, I vomited, I choked and gagged.  I remember looking at my mom, who had tears in her eyes herself, and telling her I would rather be giving birth.  Mind you, I was 21 and had no clue what I was saying.  After having 3 kids and 3 epidurals, I still stand by that statement.

They eventually paged Dr. Clouse to come do the job.  When he discovered the strength of my gag reflex, he gave me some good stuff to put me under and finished the procedure himself.  I was never so happy to see him and never so happy to get out of that place!  I was so happy my mom was there to have pity on me and take care of my bruised spirit (and nose).  I am certain we had a great meal that night!

Tuesday, November 1, 2011

In the Beginning...

I was a Junior in high school when I had my first pain in my stomach...the kind that I said, "Mom.  Something hurts and it's not right."  So, I took some Maalox.  That night marked the beginning of a very long road.  I know now that it didn't have to be, but it was.  I only wish I knew then what I know now.  I also remember at about that time being on long-term antibiotics, prescribed by my dermatologist for my complexion, as preventative control of acne, zits, whatever you choose to call it.  Sometimes I took them, sometimes I didn't.  I never understood the weight of being on long-term antibiotics and I never understood the side effects of missing one or two days and then taking them.  In hindsight, it was a mess a-brewin'!  At the time, we didn't know otherwise.  I also remember that I had a yeast infection for a very long time.  I wasn't so willing to discuss my health then, didn't know what it was and, was probably just embarrassed.  For whatever reason, I had it for months without knowing what it was or treating it. 

A few months later, sometime between my Junior and Senior year of high school, I puffed up.  I mean, I got puffy all over.  It was almost like pitting edema where you could touch my skin and the indentation would stay for a second or two.   I was active in tennis, I exercised daily, I didn't change my eating habits, but I gained weight and got puffy in a short amount of time.  A tell-tale sign of my illness that wouldn't be discovered for twenty more years!

Aside from being "puffy" I don't remember having too many issues for the next few years.  By the time I was a Junior in college, I started having more stomach pain, burning, ulcer-type pain.  This all started the second semester of my Junior year at TCU.  I had my first endoscopy, and was told I had an ulcer.  The doctors chalked it up to be stress.  I was applying for a 3-2 program at Washington University, was studying hard (right, Dad?), had a big role in my sorority and was trying to get 4 years of school accomplished in 3, in order to move on to graduate school the following semester.  From the outside, it probably looked stressful.  Maybe it was, but aside from these random stomach pains, I was having a great time! If I was stressed, I was handling it just fine from my brain's perspective.

I was accepted to Wash. U. and found myself moving to St. Louis, Missouri the following August.  Leaving TCU after 3 years, now that was stressful.  I stayed in Ft. Worth for the summer and took on another big role in my sorority for RUSH.  So, I literally walked out of the Pi Phi house at 6pm during the middle of a RUSH party SOBBING, as I said "Good-bye" to all my friends, cried HARD all the way to the airport and the whole way to St. Louis, where my parents were cheerfully waiting for this sad sack of potatoes.  I had to be at my first class the very next morning at 8am.  I waited to the very last minute to leave.  In fact, the lady sitting next to me on the plane couldn't avoid knowing I was bawling and asked me so sweetly, "Are you leaving your boyfriend?"  I barely uttered, "I don't even HAVE a boyfriend!"  Funny in hindsight, but certainly not then.  I was so sad and emotionally stressed out, I didn't stop crying until I fell asleep.

Pain, pain and more pain is about how I remember my years at Wash U.  Being at an amazing teaching hospital, I was very grateful to have had amazing doctors at my finger tips and all my meds were "free", although my Dad feels like we certainly paid for them in my tuition costs.  I found a great doctor there that I really liked, Dr. Clouse.  He, of course, had to do all his own procedures and scopes, so through the gamut I went again.  All the way, through every prodcedure, stumping each of the doctors with my results.