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Mar 14, 2011 - 1 comments
Tags:

Hernia

,

abdomen

,

loss of child

,

lupus

,

ovarians cysts

,

gall bladder

,

Dilation of common bile duct

,

Chronic Pain

,

URQ pain

,

incisional hernia repair



275532?1335917045
I am always sick. I was diagnosed with SLE (Lupus) in 2002 shortly after my son was born. At first while undergoing testing for Lupus I was devastated. After many different Dr. visits and tests It became evident that for me, Lupus could be maintained by a healthier life style and eating habits. I changed my diet to one a Lupus patient could benefit from. Within 3 months of my lifestyle changes my Lupus went into remission. I was feeling great and finally enjoying life again. I did however catch colds/viruses more often than most people and I ALWAYS have persistent pain that varies from day to day. The best way to describe the way it feels is that my body feels bruised all over. I may not be having an ache and when someone bumps into me or I beat myself up by running into things and such the pain is immediately there. Sometimes the "bruised feeling" lasts for days even a week. When sleeping, I will awaken often with sever pain varying from time to time. If i have been laying on the sheets that become wrinkled and balled up throughout night I feel as if I've got a PRESSURE POINT sore where the most evident point is on hips/back. I have the same symptoms to neck/arms and legs as well. A lot of numbness & tingling and constantly have my legs and arms feel like they are going to sleep.
      I learned to adapt to pain and deal with symptoms daily. It simply became a part of my life a I knew it. I was determined more than ever to enjoy my children and the simple things in life and to always be thankful for the life I was still able to have. I knew that other people were sicker and had many more things  to overcome health wise than myself.

   On Dec. 4,2009 I wad admitted through the E.R to the hospital. The reason I was told I was being admitted was that my blood test results indicated sever gallbladder & pancreas disease. I was admitted on the  surgical floor.
   They ran test after test along with 3 sets of abdominal x-rays, 3 MRI's, and 2 ultrasounds. FINDINGS: No gallstones, no enlargement of bile ducts. There was a 2.6 cm right ovarian cyst with multiple follicles on BOTH ovaries.Several air pockets found in abdominal area. Inflammation of the colon was apparent. Gas pockets were also noted in large.
   After all this, the General surgeon at the hospital finally came to talk with me and give me the results of testing.I was told I needed an emergency Colostomy surgery, a major operation, and will require a hospital stay of at least several days and six weeks or more of recovery at home. The operation was the same day, 2 hours later.This is where my hellish nightmare begin and STILL as of 3/11/2011 I have been in a  FIGHT for my life.

   In March, I still had same symptoms WITH ADDED abdominal pain and swelling in lower abdomen. Once again I was sitting with my PCP trying to solve the riddle. I was sent for another CT scan and an Ultrasound that same day. Both were ordered on abdomen and lower pelvis.

   The left ovarian cyst that the Dr. left alone (but visually noted and documented) was then at 9 cm. I was in total shock! That was the very first I had heard about a cyst I had let alone seeing that it more than tripled in such short time, a little over 3 months. I was immediately sent to BNH-Center For Women & Cancer.
      The new Dr ordered 2 last test, an MRI on the cyst, and a C-125 blood test. That's when we discovered it wasn't a cyst at all, but rather a Large Abdominal Mass/Tumor that was 12.9 cm. I was told I had to have it removed ASAP and sent for biopsy. The surgery was scheduled for the next Monday. Almost a year ago from today.The tumor was removed and I started the recovery process all over again hoping and praying there was an end in sight.

************************************************************************

  Four months come and went. Some of the issues had been resolved, but I was having new additional pain with very alarming stomach problems. I truly felt as if I was getting sicker by the day. Every time I go to Dr. they seem to find something else wrong.
  My PCP and I again began a new quest to find out what was going on! By now I'm starting to lose my nerve and patience. I wonder if maybe it's in my head or if I'm ever going to get better.
    I was sent for another CT scan to look for abnormal growths (by then I am sure that the tumor is back) and thinking that it's cancer.
   Thankfully the CT SCAN did not find any new growths in stomach. Rather it showed I had a 2cm nodule. A solitary pulmonary nodule which the Dr says  is a single abnormality in the lung that is smaller than 3 cm in diameter. Generally, a pulmonary nodule must grow to at least 1 cm in diameter before it can be seen on a chest x-ray film. It was advised to have a follow CT on lungs in 4-6 weeks. The other finding was that I had a abdominal incisional hernia.
    Once again i was sitting in the office of a General Surgeon discussing going under the knife again! This time for an abdominal incisional hernia. The 3rd time in 7 months! this surgery took place on 7/11/2010.

    My whole stomach was double line with Mess Netting. The Dr. told me that every place I had an internal stitch placed had herniated for a total of 4 different places. My entire abdominal wall had herniated. It took 6 hours of operating to fix my abdomen. And still she did not think that this could explain my symptoms or all the upper right quadrant pain.
   That operation was single handed the MOST painful thing I have ever experienced in my life.I was cut open from top of pubic line to 2 inches above belly button and I had a 1.5 inch cut above the original cut for a plastic drain to be inserted to drain stomach of fluids and blood and to keep swelling & inflammation under control. It had a fist sized plastic ball attached that I had to wear for 6 days. It was emotionally upsetting and nasty!
********************************************************************  

            Recovery for me is still underway physically. The pain still exists.
   On Sat. 03/05/2011 I had another very painful experience that knocked me on my *** again! I refused to go to E.R knowing that all they could do was offer me drugs and maybe shake my hand good-bye. I have almost given up any and all hope of finding answers and explanations as to what is slowly sapping the life out of me.

    On Mon. 03/07/2011 I went to PCP with the pain once again. It was all I could do to walk to exam room. I went over symptoms with the Dr. and told him I thought perhaps I had another Ovarian cyst rupture. He ordered another STAT CT scan with contrast IV and told me to go straight to hospital and to NOT LEAVE until he called me and instructed me as to what to do.

                Impression of CT ABDOMEN AND PELVIS WITH CONTRAST
**Right ovarian follicles with 3 cysts.
  *There is persistent diastasis of the rectus abdominis  muscles and persistent incisional  hernia to incision cite.
**Dilatation of the common bile duct (with no etiology observed) measuring up to 16 mm
     ALL OTHER ORGANS ARE NORMAL AND SHOW NO SIGNIFICANT ABNORMALITIES.

*********************************************************************
   I have no choice but to have what will be my 4th operation since Dec. of 2009  .the hernia is so large that my intestine, stomach or appendix could slip through hernia and quickly become life threatening or fatal. I can't believe it. I have cried for 2 days now. I know it doesn't help solve anything. I feel so totally devastated. I can't imagine having to go through the hell of it all for the 4th time. I didn't even get a full 6 months out of the previous hernia repair. There was only a 3-5% chance of re-rupture! I have no choice but to have the hernia repaired to prevent Intestinal/Small bowel  rupture.
    So anyway, I am sitting on this in a very emotional way. Apart of me is feeling as if I need to RUN as fast as I can away and try my BEST TO FORGET. I don't want to give up, but I can't see where I have been helped or given a diagnosis but yet I am sicker than I ever have been.
   Please, I am begging for anyone that has experienced some or ALL of these hellish medical conditions to please share your information with me. I either get educated about my medical issues and try to figure this out myself OR SIT BACK LIKE I HAVE FOR LAST 18 MONTHS and cry when the pain is uncontrolled. Sometimes I wonder if this is what it feels like to "wait to die".
   I have made the choice to fight back and hopefully, by the grace of God, find some much needed answers. Dare I even ask for a diagnosis?? I'LL TAKE A CHANCE AND DEMAND ONE, being patient hasn't been productive for me. Thanks for taking the time to read my article! Good luck and BETTER luck to everyone seeking out the "UNEXPLAINABLE"   Anna




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by dawnjburns70, May 01, 2012
Hi Anna
I ran across your post and thought we shared a lot of issues.

I have had numerous issues that are now being equated to possible lupus (i have undifferentiated connective tissue disease) and sjogrens syndrome.  

The one thing I wanted to share with you is that I had recurring right upper quadrant pain AFTER gallbladder and I had to pretty much go dr to dr to dr for a year.  My liver enzymes were sky high and I was so sick for over a year.  Finally I had a procedure called ERCP which is to treat a condition called sphincter of oddi dysfunction which causes this pain. I had a horrible reaction from it and wound up hospitalized for 4 days. Eventually it subsided.

It helped me for two years but now I am having the same issues minus the elevated liver enzymes. I am now looking at another ercp (operation used to open the bile duct/sphincter muscle) but this type the muscle would be cut instead of just widening the opening.

I am definitely hesitant but the recurring pain is horrible and I too am disuaded from going to the hospital because they will just drug me up and tell me to follow up with my doctor!!

Please email me at ***@**** and let me know how you are. I wish I saw this post sooner!!

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