Thursday, July 23, 2015

fighting the fight

God gives you blessings along the way.  Realizing those blessings gives you the courage to continue fighting the fight.  These past 5 years have brought me so many health problems but even to this very day, I keep pushing forward and surrender all my troubles to him. 

Just when you think there is no cure, a little determination and guidance things began to change. I know it has been awhile since my last blog but I wanted to gather more information on recent test results.  About a month ago I had another gastric emptying test done to determine if the pyloroplasty surgery was a success or not.  For my gastric emptying test I had a difficult time finishing the radioactive eggs and toast.  I can't eat a large amount of food without getting nauseous and have abdominal pain.  After a week of patiently waiting, I finally got the results.  I had improved with some symptoms during the last 6 months since pyloroplasty surgery.  Vomiting has decreased 90%, bloating decreased 75%, hunger increased about 50% and I am now able to tolerate salads and more regular foods.  Pain and discomfort are still present. Weight has stable for a couple of months now. The results on my gastric emptying test after eating radioactive eggs and toast: 0 minutes I was at 100% retention, 60 minutes normal range is (37-90%) I was at 66.1%, 120 minutes normal range (30-60%) I dropped to 17.1%, 180 minutes normal range (10-29%) I was at 4.8%, 240 minutes normal range (0-9%) I was at 2.4%.  So in simple terms the positive aspect, I no longer have any food retention. Which is good.  I don't have to worry about food left in my stomach for 6 to 8 hours later after eating!!  The negative aspect, I now have dumping syndrome.  I switched from one thing to another.  With the pyloroplasty surgery my pyloris is permanently open, therefore foods are dumped into my intestines without fully being digested.  Now I know my stomach still is paralyzed because of it not being able to expand but what about my stomach rhythm?  Well in a few months I will have another electrogastrogram to test my stomach rhythm. I am praying my stomach rhythm is okay.  I don't want to have to get a stomach pacemaker.  On the other hand, I still have massive right upper quadrant pain, which I have had for over 4 yrs now.  My doctor seems to think the pain is coming from some other organ.  He suspects it is my colon.  My medication of bentyl was increased and started me on Citrucel.  If pain persist, which I am sure it will, my doctor will want to do a full body MRI with contrast to find out what exactly is causing the pain. 

I recently went in for a follow up visit with my endocrinologist to discuss the concern I have with dumping syndrome, energy levels basically dropping and absorption concerns with medications for my adrenal insufficiency.   After explaining to her what I was diagnosed with she immediately became concerned yet was at a loss.  You see, having dumping syndrome foods, medication, fluids not being properly digested in my stomach and going directly into intestines puts my body into stress and I'm not getting the nutrients I need.  For 8 weeks, I had to go to another one of my doctors office every 2 weeks just to get a B12 shot.  I am vitamin D deficient again. I am extremely concerned because if my body isn't getting what it needs, I am going to be in a world of hurt.  You see if I am not absorbing my hydrocortisone for the primary and secondary adrenal insufficiency then I could become so weak, very sick to my stomach, faint or end up in a coma.  To my surprise after bouncing thoughts back and forth between the both of us she was at a loss as to what I should do.  The only thing she kept saying was just stress dose.  Take 15 mg in the morning instead of 10 mg and in the evening take 10 mg instead of 5 mg of hydrocortisone but don't do it all the time because I could develop crushing syndrome.  She said to increase medications if I am extremely weak.  I know for a fact there are other ways to make sure I am getting enough hydrocortisone so I won't go into a downward spiral.  When I walked out of my doctors office I knew I needed to find another endocrinologist.  I can't just take a chance like that with my life.  I need to know what I should do and how to handle it all.  Not just wing it like she basically put it.  So when I go back to my other doctor next week to get rechecked on my B12 levels, I am going to ask for a referral to a new endocrinologist.  I really hate to do it especially considering she really saved my life by testing my cortisol levels and finding out I have 3 additional diseases. 

I'm just tired.  I am tired of going to all my doctors appointments when I have a day off of work.  I am tired of having to constantly remember to pop another pill for this or for that.  I am tired of not having any energy anymore, constantly hurting.  Being 41 years old I never knew I would end up with so many diseases.  Yet I know God is with me.  So I will continue fighting the fight.

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