Take Charge of Your Health Care

Since 2007 I have been in the hospital six times.  It started with the swelling of my lymph nods in my left arm and neck.  My husband, son, and I was in a sports store looking around.  I remember hitting my hand on a shelf when I was walking.  I went and used their bathroom.  I met up with my husband in the store.  My left hand started hurting and swelling.  I had to take my watch and wedding ring off.  The sensation went up my arm.  I began feeling sick. We got home and I went and laid down.  The pain and pressure got worse.  I got my husband to take me to the emergency room in our local hospital.  The swelling was in my left arm and in the left side of my neck.  They admitted me to the hospital.  My doctor came in the next evening thinking it was one thing and realizing something else was going on.  They ran all kinds of  blood work.  All they found was I had a urinary tract infection and staph in my urine.  They pumped me full of heavy iv antibiotic and medicines.  They called in a infectious disease doctor.  Nobody was sure what was going on.  I spent a week in the hospital.  I got out of the hospital.  They sent me home on a lot of antibiotics even thou did not know what was going on.  I was home three days and got where I could not keep nothing down.  My doctor put me back in the hospital.  At this point my arm was not hurting and as swollen as much.  This time they called a GI doctor in.  He ran a upper scope and started me on some medicine to help me eat.  The medicine had good results.  So I went home again still not feeling very good and not knowing what was going on in my body.  All I could tell them was it was like something was attacking my body from the inside.

It was not a month later my arm swelled up again. This time it went from left arm to my neck to my right arm and down it.   So now both my arms were in pain.  I had no energy and I felt sick all the time.  At this point I changed my primary doctor

My new doctor sent me in for all kinds of blood work and test.  He would not let me go back to work.  This time everything stayed swollen and aggravated.  My doctor went as far as taken one of my lymph nods.  Everything was clear there to, no cancer.  My lymph nod was three centimeters in diameter.   After about two months  everything started easing off.  The swelling left as fast as it came and we still did not know the cause.  At this point my doctor believed it was a autoimmune disorder. 

At the end of 2008  I started have pressure and pain in my female area.  I went to emergency room because I thought I had a urinary tract infection.  My urine was clean, no infection.  They ran a ultrasound and more test.  As usual nothing defined was showing up.  They sent me to my female doctor. The lower abdomen pain became constant.  I was living on pain medicine again.  I went and seen my female doctor and he said it was not female and told me to go see a  GI doctor.  So I found one and went.  He said he thought I was have diverticulitis. He started me on medicine to treat it then he sent me into the hospital for a cat scan and blood work.  I had to wait at the hospital until the results were in.  I was in a lot of pain because I did not eat anything and could not take any pain medicine.  The results came in and they sent me home.  The doctor’s office  did not make me a follow up appointment.  So  I was still hurting and sick and still did not know what was going on.  After about four days I started feeling better.  The pain eased up.  So I figured I was getting better.  I called the doctor to see if I needed to come in for a follow up appointment.  They made me appointment. 

I finish my medicine. I thought maybe we fixed it, but I was wrong.  A few days later the pain came back.  I talked to my primary doctor and told him what was going on.  He put me back on medicine for diverticulitis.  I went back to see the GI doctor and he told me he was not sure what was causing the pain.  He set me up for a colostomy.  I had lived in constant pain for a month.  By that weekend I could not stand the pain anymore.  I went to the emergency room.  I told them what was going on.  They ran another cat scan and more blood work.  It was all clear.  They were not sure what was going on.  They even ran another ultra sound.  At this point I was not going home without any answers.  I told them to call my doctor.  They called my Doctor he admitted me to the hospital.  My doctor called in a surgeon, female doctor, and GI doctor.  They ran a colostomy.  They found nothing that would cause that pain.  The next step was surgery.  They did a exploratory Lap.  They went in and found a growth that had spider-ed out on my intestine and female organs.  They also removed my appendices.  When I woke up I had immediate relief.  I felt like we had actual fixed something.

I went home a few days later.  I was still not eating good.  About a week later I started a GI bleed.  I went in to see my GI doctor.  They put me back in the hospital.  They put me on bowl rest and put me on IV nutrition called TPN.  They ran a upper scope again and more x rays and scans.  They did not find anything that was life threatening.  They put me on steroids and IV antibiotics.  They had trouble getting me to eat again.  They needed to run another test that would take pictures of my small bowel but it could only be done out patient.  After spending another week in the hospital I finally got out.  It would take another couple weeks to take the test I needed.  It was a capsule camera you swallow and wear a monitor that stores the pictures it takes.  After I did the test and it would take another couple of weeks to get the results.  During this time I was still having a lot of pain and discomfort in my GI tract.  I still was having trouble eating.  I was at the GI doctor office about every week.  The test showed I had irritation in my small bowel.  The doctor told me that I had the making of Crohns.  He started me on three different medicines.  I was still having a lot of problems with my guts so they changed my medicine around.  There was two GI doctors that worked there.  I wound hear something different each time I went in.  I was getting frustrated. 

I was at the point that it was time to change doctors again.  Nothing was getting better.  When a doctor keeps telling you he does not know what is going and does not seem to want to find out it is time to move on.  I final got to talk to the other GI doctor at the hospital I work at.  I explained to him what was going on.  He told me to get my records and call to make appointment.  I did that.  Before I could get in to see him I got real sick again.  I had started having a lot of burning and pain in my guts.  I went to see my old GI doctor.  He sent me in for a cat scan and blood work.  The cat scan was not to bad.  My hemoglobin was a little low.  He put me back on some antibiotic.  It did not get any better.  About two weeks later I started running a fever and was feeling really bad.  I had went to see a new doctor that my primary recommend.  I was running a 101 fever that morning.  I told him what was going on.  He told me he could not help me.  He recommend me to another doctor and told me to go in see my old GI doctor because of the fever.  I got in right away.  They brought me to the back.  They did not even take my temperature.  The doctor came in.  He said my cat scan from couple weeks ago was normal.  He told me to go home and take something for the diarrhea.  I ended up in the emergency room the next day.  My guts were lit up like a light bulb.  This time everything went like clock work.  The GI doctor I wanted was on call that day.  The first think he did was order a stool culture.  Until now no one else had done a stool culture.   The culture came back positive for MRSA.  My question is how long did I have this in my body.  I spent a week in the hospital.  They started me on oral medicine to get rid of it.  I would have to take pain medicine and nausea medicine to eat.  I want out of the hospital.  I got out of the hospital and got feeling better.

  I had five good days.  I felt so good.  I started back to work.  I started running a fever again and the pain started again.  I went in to my primary doctor.  He put me on steroids again.  I also talked to my GI doctor and he ran some more stool culture.  In the next few days I ended back in the emergency room and found out at that time.  I not only had MRSA still I had c-diff from all the antibiotics.  They put in a central line and started me back on IV nutrients.  I was not able to eat anything.  I was also on a pain pump.  It was worse this time.  I ended up spending two more weeks in the hospital.  They would not let me leave until I was clear of infection and could eat. 

I have been out of hospital for about two weeks.  I go see my doctor tomorrow.  I can tell the infection is gone.  I still have to watch what I eat because of the IBD(irritable bowel disease).  My question is was it possible I had the staph all this time in my gut? Is the problems I have now from that?  Through this I have learned to be very aware what is going with my health and health care.  Do not believe everything you hear and always get a second opinion.  If your doctor is not proactive with your care you might want to find another doctor.