It's only just begun...

It's been a little over a year since I was diagnosed with Gastroparesis (also known as GP).

For those of you who are not aware of what Gastroparesis is - here is some of the medical information regarding this disorder.  Gastroparesis falls into a category referred to as gastric motility disorders or you may have heard of digestive tract paralysis (DTP) - either way Gastroparesis, in simple terms, means paralyzed stomach.  Gastroparesis is one of the most severe and complicated of gastric motility disorders.  There is no cure for Gastroparesis, instead the medical community who are educated about this condition to their best to assist their patients with management of their symptoms.  There are approximately 5 million Americans, including children, who suffer from Gastroparesis.  As with other disorders, each patient is different - the cause is different, they present symptoms differently, respond to treatments differently, etc. - however we are all praying for a cure (and so are our loved ones).  If you are interested in learning more about this disorder, visit http://www.g-pact.org/ for some great information.

My journey with Gastroparesis has been a challenging one.  I have tried all of the oral medications available - my body either didn't respond or the medication had an adverse reaction and did the exact opposite of what it was supposed to.  In October 2010, I underwent my first Botox treatment.  I was nervous at first, at the thought of Botox being in my body and the potential side effects.  But I also knew that I had exhausted all non-invasive measures and it was time to transition to other treatment methods.

The Botox (Type A) made me really sick for the first few weeks - I lost about 12 pounds my first week and I literally looked like death.  There is a picture of me with my friends that was taken at an event shortly after the procedure, which I have a hard time looking at.  Eventually the Botox would kick in and I had what I would refer to as relief from my GP symptoms.  The distention of my abdomen went down quite a bit and for the most part I was able to eat what I would call a normal diet.

In April 2011, I began to notice that the effects of the Botox had worn off.  I could no longer eat without complications and the symptoms I previously had all returned.  I met with my gastroenterologist who scheduled me for another Botox A treatment - this was the beginning of June.  My body didn't respond.  My doctor explained that I had built up a tolerance to the Botox that quickly - that the only other treatment he had available right now was to try Botox B.  Unfortunately he couldn't perform the procedure right away and I had to wait until August 15th.

Which brings us to the present.  I had the procedure done and was very sick the first few days - I was hopefully that because my body was showing side effects to the Botox being in my system that it meant it was going to work for my GP.  Unfortunately that doesn't appear to the be the case.

Since my procedure, I have lost 9 pounds in the last two weeks.  I am now suffering from severe heartburn - the acids coming back up my esophagus are very painful.  In the past week and a half, I have now run into the issue that I cannot consume foods and am struggling with liquids.  I have tried pudding, applesauce, freeze pops, broths - nothing works.  I am lucky if I can consume a 16 ounce bottle of water in an entire day.  In addition to GP, I have a condition with my esophagus where it constantly spasms.  These spasms make it difficult for food/drinks to go down my throat to my stomach and also creates a problem in that was does get into my stomach has a chance of coming back up.  I fight with every ounce of me - to not throw up.  I despise it.  I also know that if I start to throw up, it will eventually end up as dry heaving - and that is what I really despise.

So yesterday I had an appointment with my gastroenterologist.  He initially wanted to send me home with a script for Zofran (an anti-nausea medication).  My eyes immediately welled up with tears.  He looked at me and said I need for you to try it for just a few days and if it doesn't work, then come back down to the hospital through the emergency room and we will admit you.  I told him I was sorry - if I went home, then I would have to go to the emergency room of a local hospital.  That my family and friends were concerned and had actually been trying to get me to go to the hospital for the previous week - I was dehydrated and completely malnourished.  He looked at me said - I will admit you.

And so my first GP Adventure begins.  My appointment was at 11:45am and the nurse shared with me that it would take a little time for them to get me a room.  Note to self: in the future, don't get admitted through an office visit - just go to the emergency room.  I sat in the waiting room for what seemed like forever - it was.  My circulatory disease would be in high-gear and I would eventually have to cave and ask for blankets.  So there I sat in the waiting room, wrapped up in hospital blankets - with every patient after me looking at me wondering what was my story.  The nurse would come to me several times to tell me they were still working on my room.  Finally she would come at 4:00pm to tell me to head down to admissions.  By 5:00pm I would be in my room.

Then we begin the waiting game and how many doctors can we see.  Around 6:45pm, I saw a student.  He was very nice - quite cute actually.  He would ask me a million questions, jot down all of my answers and then spew the information back me to make sure he was getting it right.  Shortly after 7pm, I would be seen by the Resident - who would come in and repeat to me what the Student had told him, I would make a few corrections and then he was off to fill in his Fellow and get my orders started.  My nurse for the night was Sean - he was a nice and funny guy.  It would be almost 9pm before he was putting in my IV.  I am always asked if I have a preference as to which side they put the IV in - which I always answer my right arm because my veins are better.  So he picks a vein on the underside of my forearm - he blows right through it.  So I now have a nice bruise.  He decided to try my left arm and found a vein that was close to my elbow - which I am now starting to have complications with.

In addition to my IV fluids and Zofran - I receive daily shots in my belly of a blood thinner to make sure I don't develop blood clots.  I had for the most part confined to bed 5 days prior to my appointment and now I was going to be confined even more - so they need to make sure that blood clots do not become an issue.

My night would prove to be more challenging.  Around 11pm I became very nauseous.  I received the Zofran, but it didn't work.  I would begin dry heaving (basically that's all I could do since nothing was in my system to bring up) - it was basically foam and all blood.  Bright red blood like clots.  (sorry if that was too much information, but it's the reality of what I now call life).  This would go on for several hours.  I think it was close to 4am before I actually fell asleep - which means I had been up for 23 hours straight.  I knew I wasn't going to get much sleep in a hospital - but this was ridiculous.

I would awaken to that handsome young student standing at my bedside - I glanced at the clock, it was 6:30am.  Seriously?  Seriously?  So I mumbled through his questions - because at this point I was still pretty dehydrated and still felt like a had a mouth full of cement.  He leaves and I start to fall asleep - to be awoken by the female resident overseeing my care today telling me I was going in for another endoscopy for another Botox treatment.  WHAT?!?  Everything I had read about Botox talked about the spacing out in time, etc. of dosages and I had just had the procedure two weeks ago.  I voiced my concerns to her.  A short time later I was awoken by the Fellow.  He explained that no he wasn't going to do the endoscopy but instead wanted to do a CAT Scan of my belly.  He said that they could do the Botox, in another location - but he wanted to find out what was taking place first before they proceeded.  They are also trying to determine where the blood came from that I was throwing up.

So after they left - I crashed again and this time I was able to sleep for a few hours.  I would be awoken by a neurologist.  Nice guy.  He said he was there because the doctor's wanted to make sure that my nausea wasn't being caused by the Chiari Type I malformation that I have at the base of my skull.  (Yeah, I have multiple issues - if you want to more about that, you can just google it, lol).  Ultimately he would tell me that he doesn't think my issues are caused from a neurological standpoint - but was actually more inclined to state that my diagnosis should include CREST.

CREST is as acronym meaning the following:

C - Calcinosis (high levels of calcium, which can leave deposits on the skin)

R - Raynaud's Phenomenon (spasms of blood vessels in response to stress and cold)

E - Esophageal Dysfunction (acid reflux and decrease in motility of esophagus)

S - Sclerodactyly (thickening and tightening of the skin on the fingers/hands)

T - Telangiectasias (dilation of capillaries causing red marks on surface of skin)

I have C through S.  T is actually questionable as I have red capillaries showing on my skin, but they are not clustered as you see in most patients with this condition.

This makes me very nervous.  CREST is associated with Scleroderma, which I already have a confirmed diagnosis of.  Gastroparesis can be caused by Scleroderma.  Right now my Gastroparesis is marked as idiopathic, as they were not previously sure - however it is starting to look more like it is being caused by Scleroderma.  If that's the case, Gastroparesis will be just a portion of what lies ahead for me.

There are going to be some changes in my life - some still unknown and some currently unfolding.  Gastroparesis alone is going to challenge my mental strength - if Systemic Scleroderma is add to that - I am going to have to go on a personal journey to tap into strength I have never needed before.

I have a great support system around me.  Family and friends who love me.  I am sure so of those individuals will slowly disappear from my life when things get hard - it's human nature.  Who wants to sit by and watch someone deteriorate or maybe even die.  I would understand this I guess - and would just ask that those that feel they need to step back, feel free to do so - just tell me.  I would rather hear it from you and more importantly would like to reassure you that I understand and love you anyway.

My journey is just starting to kick into gear and I am sure it's going to be a rough ride - but it's a ride that I don't have the ability to turn off.  So please be patient and understanding, if I tell you I am too tired to do something.  Please do not be offended if I don't feel up to hanging out.  Please understand that being around food when I cannot eat it, is still new and challenging to me - someday I will learn to adjust - but for now understand if I decline participating in an event that I know will be focused around food.

But most importantly, I would ask that you help to raise awareness about Gastroparesis and Scleroderma.  Both have no cure.  Both can be fatal.  I want to be around for a long time - help me to raise awareness and who knows, maybe a cure can be found.  Check out http://www.g-pact.org/ for more information on how you can help support this cause - whether it's to write a letter, organization a food drive in honor of someone with GP, or purchase a bracelet - every little bit helps.