A New Chapter?

Although I would rather not think about any of this right now, I'd like to update you all on our most recent findings. 

This week was the conclusion of the testing my GI had set up to determine what was going on with me digestively.  Let me just say, the preparation for many of these tests is near torture so I am so glad they are over.  I suppose if this is an open forum and I am trying to connect with others who may be dealing with similar issues I need to be honest and open as well.  I had a small bowel follow through, a hida scan, an abdominal ultra sound, blood work, stool samples, a colonoscopy, and an upper endoscopy.  All of which, except the stool sample and blood work, required fasting of some sort.  Some required additional preparation, non of which was enjoyable.  When you are suffering, you are willing to do nearly anything to relieve the pain.  That's what I did.

At this point, there was no evidence of Ulcerative Colitis or Crohn's disease.  That was our biggest fear and the doctors initial thought.  The biopsies are still out so we will know for sure once we get them back.  That is a relief.  What they did find was my immune system attacking (surprise, surprise) the parietal cells of my stomach.  Leaving my stomach a beautiful disaster.

Parietal cells secrete gastric acid and intrinsic factor.  Intrinsic factor deals directly with the absorption of vitamin B12.  The inability to absorb B12 is called pernicious anemia.  The treatment is usually B12 supplements taken sublingually or by injection.  Gastric acid is a digestive fluid.  Gastric acid plays a key role in the breakdown and digestion of proteins, by activating digestive enzymes.  Together the enzymes and acids unravel the long chains of amino acids found in proteins. 

The doctor immediately checked my B12 levels, but I have been on B12 injections for a few months now based on a blood test that showed antibodies against these parietal cells.  I suspect the levels should be normal and I will continue the injections.  As for the gastric acid, we were told there is no replacing it.  My stomach did show a lot of damage so I was placed on a medication to heal it.  I understand this medication is normally used to treat stomach ulcers.

I was told at the conclusion of the final scope that a referral was going to be sent to an immunologist.  At this stage of the game, the goal is to stop the immune system from attacking healthy organ systems and continue fighting foreign invaders.  In a few weeks I will have follow up appointments and get the final results of all the tests.  The GI doctor seemed positive and said, "We're on the right track."

I have mixed emotions about this all.  I assume anyone would.  On one hand, I am happy that they actually found the source of this unyielding pain.  I am glad there is some validation.  At some point, you start to feel crazy feeling so sick with no answers.  I am also glad to be heading in the right direction to having the full picture of my health.  On the other hand, I am overwhelmed and frightened.  I was looking forward to some relief from the pain and discomfort.  I knew that would be unlikely if it turned out to be UC or Crohn's so when I heard the intestines looked good I was excited.  To know that there is no way to replace the gastric acid is rough because I know the lack of digestion is causing the pain.  Bundle that along with the lack of absorption of key nutrients leads to feeling pretty run down quite often.  I am frightened by what the immunologist may find.  I realize I should compartmentalize.  Looking at this as a whole is too overwhelming.  But human nature....well, I'll say my nature, is to plan and prepare...and worry I guess.  My way of dealing with this is to lay it all out, even the "unimportant" factors, and then compartmentalizing and move on.  That's what I'll do here.

I have been so self conscious about my physical appearance.  Let's face it, what woman isn't.  I feel very vain and superficial for feeling this way, but I will not deny it.  I have acne.  I hate it.  I learned that this is a symptom of the antibodies attacking the parietal cells.  Now, I know it will not clear up so I will have to learn to deal with a teenagers face in adulthood.  I have also had a very straight framed body.  With the most recent weight loss, I feel like a little boy.  That ultra thin hungry look is not what I go for.  Add that to the fact that I cannot wear clothing that is too tight or restricting on the abdominal area because it just puts too much pressure there, makes me feel sloppy.  I am in definite need of a fashionista to find some comfy, but flattering clothes.  That's enough vanity for today.

Now moving on to the physical aspects.  I am overwhelmed and frightened by the fact that they can continue to "band-aid" the pain, but it will never be resolved.  I am learning to eat slowly and chew very well.  I am so limited, at this point, as to how much and what I can ingest.  Many woman would be happy to be worrying about being too thin or being forced to eat less and be conscious about what is in your mouth, but it is not something that I enjoy at all.  Our culture and society is inundated with food.  Social gatherings, holidays, dates, movies, etc all involve food.  It is an integral part of our lives.  To me it is nothing but the enemy.  I was hoping this would not be the case for the duration, but the harsh reality is, it will be.  Rough road to be looking down.

So, I take all of this.  The good, the bad, and the ugly.  The truths, the uncertainties, and the predictions.  Gather them all in a pile.  I will take it and put it at the back of my mind.  When something needs to be accessed, it'll be there.  In the meantime, I wait.  I focus on my family.  I focus on my gorgeous son, who, by the way, turned 6 yesterday.  I take his smiling face and incredible heart and mind and I run with it.  Soak it up.  Keep my eye on the prize and leave the rest to God.  The burden is too big to carry so I imagine lifting it off of my shoulders and throwing it to Him.  I imagine my own father, who passed from complications of Type I diabetes nearly 24 years ago, looking down on me.  I feel him smiling down on me and guiding me.  I long to hear his voice.  I would love to ask for advice.  I know he is listening.  I know he is talking to me.  I just look for the signs.  I embrace my parents love and support.  I appreciate the warmth of my sister who lets me lose it whenever I feel the need.  I admire my husband for his strength and unyielding love throughout this all.  And I remember, no one is put on this earth to suffer.  It only enhances the good in life.

another day another stomach ache

This week has been interesting.  Lots of information, lots of speculation, lots of changes, and still lots of smiles.  First of all, I was awakened in the middle of the night to what I am sure is a mouse in the wall between our bedroom closet and our bathroom.  SCARY!  Mice carry disease and that terrifies me LOL This is our first home so I am a little clueless as how to take care of this pest.  I do not want an infestation.  Advice anyone?  Cats are not an option in our household.  It did lead to some interesting pillow talk, trying to figure out what that little creature could have to do so busy in the middle of the night.  We think he is building a city.

I watched an interview with Emmitt Smith yesterday.  I am a lifelong Cowboy fan and love me some Emmitt.  He talked about how he used to meditate before games to envision the great run, the touchdown, the good block, and the win.  I joked with my husband and said I was going to envision today being a good day.  I envisioned my morning run going smoothly without me having to stop because of getting sick.  I envisioned getting dressed in regular clothes with no pain.  I envisioned being hungry for meals.  I went to bed with a smile on my face ready to face what I had envisioned.

I woke up this morning feeling motivated.  I set out for my run and made it almost all the way through before my stomach decided it no longer wanted what was inside.  A typical event in my daily life these days.  I rushed to the bathroom, dealt with it, got in a nice shower, and tried to relax away the pain.  I got myself ready.  I put on my makeup and did my hair with a smile on my face.  Today is going to be a good day.  I then chose my outfit.

I picked a cute tank top and a pair of jeans.  Although all of my jeans at this point are baggy, I rarely get to wear a pair because the pressure of the waistband hurts.  I have been wearing many elastic waistband outfits lately, but long for the wardrobe that just sits in my closet, waiting to be worn.  Our car is in the shop right now so I had to drive my husband to work.  I put on my clothes and topped it off with some perfume.  Feeling pretty, just a little achy, we headed out the door. 

The second I sit down in the driver's seat (I have regained driving privileges), the pain and pressure shoots through my abdomen.  GGRRR!!  After the 5 minute drive to the pharmacy where he works, it was obvious I would not be able to wear jeans today.  I had them unbuttoned and unzipped before we got out of our own driveway.

So, here I sit at home today.  The first day out of the week I have no doctor appointments or weigh ins or paperwork to deal with, so I plan on resting until my little man gets out of school.  I changed into my elastic band lounge pants for relief.  With a sigh, I looked in the mirror.  At least the cute tank I picked out goes with these pants, and my hair and makeup are still good.  So there!  I'll just expand my wardrobe (no pun intended) to included varying types of elastic waisted pants.  Maybe denim, buttons, and zippers are overrated anyway.

I have an appointment in a nearby town with a gastroenterologist.  My local doctors fear I have Ulcerative Colitis or Crohn's disease.  Both (surprise, surprise) autoimmune disease of the intestines.  I am excited to get information and answers.  I pray for relief.  I fear, like many of the conditions I have, the treatment options will be greatly limited due to contraindications of other illnesses or meds I am currently dealing with. 

I received a comment from a cousin asking if any doctor has stopped to think there may be one big underlying cause to this cluster of diseases that seem so relentless.  Unfortunately, even the Mayo Clinic was left clueless.  I get many comments that someday I will make somebody very rich when they figure it out and publish my case in a medical journal.  I also get asked about research constantly.  No one has stepped up.  No one has decided to take this on and get to the bottom of it.  I have actually been turned away many times due to the complexity of the situation. Each doctor and each specialist focuses solely on their specialty and recommend that someone take an thorough look.  My primary doctor is a Godsend, but is left dumbfounded.  I am hopeful this blog will end the cycle.

I am excited for this day still.  My son has been promised a snow cone if he gets a sticker for good behavior at school today.  I am a bit of a stickler for junk food so he is very excited!  Tomorrow morning he has his very first soccer game.  Actually, a double header.  My husband and I were basketball players and I am a runner.  Soccer is a whole new world for us, but our little man LOVES it.  Seeing the joy in his face is the best feeling in the world.  Finally, on Sunday the Cowboys start off their NFL season with a the new coach.  Let's hope this season is better than the last few.  I think family time, movies, soccer, and football are just what I need.  Now, time for a nap!