My Story Part Five: The one where I finally got a diagnosis

Are you guys ready for a diagnosis?  So was I!  I think you might get what you’re wishing for in today’s post!  Let’s get to it!

By the way, I unfortunately don’t have a ton of photos from this time in my life. I know that’s been really fun for some of you to see! My family was all about our camcorder, which I would totally love to put clips of home movies in, but I don’t know how! So for the next two posts, there will be significantly less photos, and mostly just me talking about what was going on.

The night that ended with me falling asleep in the recliner turned out to not be quite over.  I woke my mom and dad up around four o’clock in the morning with the beginnings of going alkaloid and I fainted while waking them up.  As you have likely caught on, fainting was something I had done a few times, but everyone always blamed it on overexertion or heat.  My parents called for an ambulance and I was taken Plano Medical Center’s emergency room.  We lived in a quiet neighborhood and the flashing lights from the ambulance and fire truck probably made for quite a sight!

Once there, the doctor decided to do an arterial blood draw.  This is where the blood sample is drawn from an artery rather than from a vein.  After some further research, all I can determine is that they were doing an arterial blood gas sampling.  I don’t really know why the doctor thought this might be helpful.  I do know that it hurt like heck and a half and that it took numerous tries to get it done.  I don’t know for sure if it took so many sticks because they were going through my wrist and my hands were in their crab claw formation, or if it is always this difficult to get this type of blood draw.  I just hope to never ever have to go through it again.

The test results of the terrible arterial blood draw came back normal, just like every other blood test.  Then, I was transferred to Children’s Hospital in Dallas, where I stayed for two days until my alkaloid symptoms subsided. The general pediatrician at Children’s sent me home with a prescription of amitriptyline because she was following through on that “this is all in her head” diagnosis.  I was on this medication for several months before someone switched me over to Zoloft for the same reason.  These medications made absolutely no difference in my symptoms.

This merry-go-round kept going and going.  There were more hospital visits, just like the four I’ve already described.  Every two or three months, I would end up at Children’s Hospital for a few days where I got fluids and was sent on my way.  My weight remained low during this entire time.  Doctors would simply say I wasn’t “prospering.”

My Story Part Four 9

Now for a seemingly random side note – I had always thought I had a silly outie belly button.  It was really weird, I could push it in and it was this whole funny thing among my friends.  As it turns out, it was a hernia.  Whoops!  In the summer of 2005 I had it fixed and the doctor recommended that we have my gall bladder tested to see if it was causing me all of this grief.  Good thought, but nope, the results showed no signs of problems with my gall bladder.

2006, I was thirteen-years old and my life changed forever.  At this point, my care was strictly at Children’s Medical Center in Dallas.  Nearly every test had been done, everything remotely easy-ish had been ruled out.  So it finally came down to me having to have a full-thickness biopsy of my intestine and rectum.  From what I was told, they took my whole entire gut out of my abdomen through a small incision below my belly button (SO COOL, RIGHT?!)

I picture them stringing it all around the operating room like some freaking party streamers or something.  I’m pretty sure that’s not what happened, but oh well.  The biopsy showed scarring all over my gut and there was also a lot of inconsistency in the diameter.  Some portions of it would be super large and dilated while others sections were super small.

This biopsy is where I landed myself with a diagnosis for the very first time.  The doctors called it a visceral myopathy causing chronic intestinal pseudo-obstruction.  In laymen’s terms, the involuntary movements that the muscles of my intestines are supposed to make to move food through simply don’t happen.  I lack peristalsis.  And often, while my guts are not obstructed, the symptoms I have are very much like that of an intestinal obstruction. The vomiting (even when I didn’t eat,) the constipation, the severe abdominal distention, all of this was caused by the smooth muscles in my intestines not working.

Of course, this was absolutely not the answer my parents were looking for.  This diagnosis has no cure and no tried and true care plan.  I was going to have good and bad days for the rest of my life and that is all the doctor had to offer.  That little diagnosis and a bottle of Flagil, which is another antibiotic to hopefully help with my everlasting case of intestinal bacterial overgrowth (because when things just hang out in your gut for who knows how long, they can grow some nice bacteria.)

My Story Part Five and Six 2

In May, the last month of my seventh grade year, I found myself at Children’s once again and this visit lasted much longer than any of the others.  Let me take a minute to tell you this – my dad documented that in June, 2001, I weighed 66 pounds (this was way back in the year we moved to McKinney, the summer after second grade) and in May, 2006, as a seventh grader, I weighed in at 75 pounds.  I had only gained 9 pounds in five years!

This time I’m in the hospital with my same ol’ symptoms – throwing up, super distended belly, probably some crab claw action happening.  But this time, they aren’t solely flushing me full of IV fluids.  I’m admitted and allowed to eat all the fun things on the hospital menu and probably getting fluids.  (P.S. if you don’t already know this about me, I LOVE hospital food.  I don’t know if it’s the mystery of what a fish plate coming from a hospital kitchen looks like, or what the deal is.  But the love is there and it is strong.)  The next day, I told that I’m ‘NPO,’ which means ‘no food by mouth.’  Well, great.  How am I supposed to have fun now?  Then, it got even less fun.  They started talking about this tube that was going to go IN MY NOSE, down my throat into my stomach.  Yeah, that’s pretty sick alright.

For reference, this is me with an NG tube in 2013.

This was when I got my very first NG tube, the NG standing for naso-gastric.  It was one of the most horrendous experiences of my entire life (don’t worry I’ve had about forty additional NG tubes since, so I’ve had my fair share of this fun.)  The nurses had me sip ice water as they jammed this semi-flexible tube up my nose and down my throat.  If you’re asking why I was sipping water because you’re assuming I was sedated while this happened because that only makes sense, it’s because this was done while I was COMPLETELY AWAKE. Talk about inhumane, am I right?

This tube was placed so I could be connected to suction.  Have you ever been in a hospital room and noticed that weird canister thing on the wall with a little hose coming out of it?  Well, that’s the thing I was connected to.  It has some sort of magical vacuum from something in the wall.  I clearly don’t know the mechanics of it or how it works but I do know that it helped relieve so much pressure from my big belly.  It pulled out so much fluid.  I remember when the canister would get full the nurse would record the volume, empty it and start over!  I don’t even know how there was room for all of that liquid to fit in my belly!

Whew!  All that NG tube talk has me all worked up!  Thanks for reading, see you tomorrow I hope!

The Pretty Couch Potato

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