Gastroparesis, the diagnosis...

About the end of May 2011 I started getting really sick EVERY time I ate.  I could not figure out what was going on.  I had my gall bladder out about 4 years prior to this and what I was feeling was sort of like what I dealt with when my gall bladder stopped working but worse.  It didn't seem to matter what kinds of food I ate, I tried sticking to a bland diet but that didn't seem to make any difference at all.  I would get really nauseated, have vomitting, extreme bloating, heartburn, diarrhea and would belch A LOT.  My belches would smell like rotten eggs.  It was really gross. This would happen after eating just a little bit of food and would last for days.  Eventually I got to where I just stopped eating because I would rather go hungry than to feel that sick. I am a diabetic so going without eating was wreaking havoc on my sugar.  I would also get severe  pain through my diaphragm and in the sternum.  The pain in the sternum would feel like a vice grip that was wrapped around me from front to back and was being tightened, as if to smash my rib cage inside itself.  The pain would be excruciating and could last anywhere from 15 minutes up to 2 hours.  I came to know this type of pain as attacks and discovered they eventually pass.  I also now have medicine specifically for this type of attack when they hit.  It is just dealing with them while they happen that is really hard.

But I am getting a little a head of the story... So I broke down and went to my Doctor.  Initially he thought possibly Gall Bladder Disease, Pancreatitis or some type of blockage.  He said that we needed to see what was going on in there so he referred me to a GI Specialist for an Endoscopy.  The Specialist told me I showed some signs of heartburn but other than that there was nothing wrong with me.  He prescribed me Prilosec for the heartburn but said as far as the rest there was no physical reason why I was getting sick.  I cried and cried and insisted that there was something wrong with me.  I love food!  I mean look at me, I'm a big girl!  There was no way I was intentionally making my self sick or that this was in my head.  When I first got sick I weighed 230 pounds.  This was another reason I felt that the GI Specialist wasn't taking me too seriously.  I was too overweight to be as sick as I was telling him I had been.  So the Specialist ordered a Gastric Emptying Study on me even though he didn't think I had a real problem.  He said my symptoms could be related to how my stomach empties.

So I went for the Gastric Emptying Study which consisted of my eating a radioactive egg sandwich and then they took snapshots of my digestive tract as the radioactive material moves through my system.  The normal stomach should empty half of its contents after approximately 90 minutes.  My test results showed that my stomach would empty half of its contents after approximately 485 minutes.  I have severe slow gastric emptying or Gastroparesis.

The day the GI Specialist's Assistant gave me my diagnosis, yes his Assistant not even the doctor himself, was horrible.  She simply told me what my test results were (the numbers, like that meant something to me, I was clueless) and that it meant I had Gastroparesis. (What the hell does that mean!?)  She gives me a prescription for Reglan and proceeds to tell me that my case is beyond their scope of ability and they are referring me to the Gastroparesis Clinic at Allegheny General in Pittsburgh.  I am given this information like she was just giving a weather report and then smiles and tells me to have a nice day.  What!!??  So I leave with more questions than answers and go home to jump on the internet and find out what this news actually meant.  At first I was just dumbfounded.  Learning that basically my stomach is suffering from a paralysis and no longer works! That there is NO CURE!  That I may never be able to eat normally again!! This is insane!! I've never heard of such a thing.  NO!!! There MUST be some sort of mistake!!!

*Gastroparesis, also called delayed gastric emptying, is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for a longer period of time than normal. Normally, the stomach contracts to move food down into the small intestine for digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not work normally. Food then moves slowly or stops moving through the digestive tract.
* Wikipedia

 

Oh, the denial!!!  It took me quite some time to wrap my head around the fact that this was real and I had to deal with it somehow.  So I started looking for solutions to my dilemma online.  I found a lot of discussions and forums where people were just SO negative and loved to tell the horrors of what they were dealing with.  I was reading about people ending up on feeding tubes and such and thought NO.  This is NOT going to be my story.  And it is not.  With the help of Crystal Saltrelli and all the great information she has availble I have formed my own Comprehensive Management Plan that is working wonders for me.  I will go more in depth about my Comprehensive Management Plan in another post.

 

So anyway...

I am aware of the side effects of Reglan and have chosen to not take it.  This drug can cause Tardive Dyskinesia which is uncontrollable muscle spasms, commonly facial muscles, that don't go away.  There is a great risk of having it for life.  I was prescribed Domperidone (not FDA approved in the United States) by the next specialist, but it did not work for me.  I had to have it shipped from Canada by my doctor since it is not FDA approved in the US.  So I do not take any medications for Gastroparesis itself.  I do take meds at times to alleviate the symptoms when they get bad.  I've been prescribed Zofran and Phenergan for the nausea.  I've also found that Nauzene, an over the counter chewable, works good to alleviate the nausea too.

So the next doctor I meet with tells me that he concurs that I do have Gastroparesis but he believes I also suffer from Sphincter of Oddi Dysfunction (SOD).  So he orders some additional testing and ultimately confirms the suspician of Sphincter of Oddi Dysfunction (SOD).  Unfortunately the treatment for SOD involves surgery which many times results in Pancreatitis.  So he prescribed Hyoscyamine which can be taken at the onset of an attack.  This doctor prefers to hold off on any type of surgery until it is absolutely necessary.  However, he referred me to a group of specialists which are part of the Gastroparesis Clinic who seem to think that eventually I will have to undergo the surgery, that the attacks will come more often and last longer.  Great!  Something to look forward to.  However, with the progress I have made I haven't had a pain attack, not one, in about 5 months.

Beyond the medications the doctors told me to try to stick with low fiber and low fat foods.  To juice or puree foods so that I could digest them more easily.  They recommended meal replacement drinks and that I just had to try until I found what foods I could tolerate.  Basically trial and error.  They suggested I limit my caffeine intake as diarrhea was one of my primary symptoms.  This actually made a huge difference.  I love Ice Tea but I now make it half & half, half regular and half decafinated. 

I have come a long way since my diagnosis.  What I once thought of as the worst thing in the world I now look at as the best thing that could have ever happened to me healthwise.